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The dynamics of patient organizations in Europe

Madeleine Akrich
João Nunes
Florence Paterson
et al.

Chapter 1. Experience, knowledge and empowerment: the increasing role of patient organizations in staging, weighting and circulating experience and knowledge

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1Vololona Rabeharisoa

2The role of patient organizations in the staging, weighting and circulating of knowledge and experience data on diseases and healthcare problems has been investigated by several social science disciplines in the past few years. Social scientists have joined patient organizations in calling for a redistribution of power between patients and specialists, in decision-making, which directly concerns patients and involves scientific and technical knowledge. For several years, political authorities in most European countries have likewise been explicitly urging medical institutions to improve their governance by paying attention to the multiple stakeholders, including patient organizations. We will briefly consider the emergence of this claim within the associative world, before putting into perspective the analytical frames mobilized to deal with it.

Sharing of experience, opposition to biomedicine, and co-production of knowledge with specialists: POs' epistemological claims throughout history

3The sharing of patients' experiences of their disease is the raison d'etre of many patient organizations. Historically, the sharing of experience has been the rationale for self-help and mutual aid. Borkman's seminal work on Alcoholics Anonymous, considered as the founding fathers of the self-help and mutual aid movement, clearly illustrates this (Borkman, 1997; 1999; Rabeharisoa and Callon, 2000).

4When Alcoholics Anonymous was founded in 1937, alcoholism was seen in the US as a public order problem that fell under the jurisdiction of the police and psychiatry. People found in an advanced state of inebriety were usually interned and subjected to psychiatric shock treatment. The problem was that most of these people systematically relapsed. Based on the evidence of this failure, two desperate alcoholics learned together that willpower alone, which psychiatric treatments were supposed to restore, was not enough. When they created the first Alcoholics Anonymous group two years later, the first target of their opposition was psychiatry. Their criticism was twofold: first, against the centralized and bureaucratic functioning of this institution, which precluded the treatment of local, urgent situations; and second, against psychiatric treatment itself, which they deemed to be completely ineffective. By discussing this issue together, they realized that this treatment overlooked what it actually meant to be alcoholic and live as an alcoholic, with all the implications in the person's working, family and social life, with the ups and downs, the hope of breaking free of the addiction, followed by episodes of total despondency and sometimes even the wish to commit suicide. They believed that psychiatric treatment could not and did not know how to deal with an alcoholic's internal chaos, in relation to which the idea that it was enough to restore a little willpower seemed completely unrealistic.

5The solution that they proposed to other alcoholics was to get together anonymously, when they wished to and for as long as they wished to, to share their difficulties, hopes and struggles, and to draw on the group for strength and support to remain sober day after day. This solution was not always successful, but it did enable enough alcoholics to break free of their addiction for professionals to consider it as an effective therapeutic approach. What was the source of its effectiveness? It was based on a combination of the experience of alcoholism of those concerned, and now widespread but then emergent scientific theories on the notion of dependence. These theories posited that it was not the person who, through weakness, gave him- or herself up to alcoholism; it was the alcohol itself, an active substance, which in certain individuals created a phenomenon of alienation through mechanisms that were not known precisely. These theories of dependency were crucial for Alcoholics Anonymous, first because they lightened the load of guilt and responsibility that the psychiatric institution had put on the individual's shoulders, and second because they made it possible to propose a very different therapeutic principle from traditional psychiatric treatment. This principle of sobriety, as it was called, consisted of the claim that willpower was necessary but not enough; above all, the person had to avoid any exposure to alcohol at every minute of every day. It was to help people to stick to this path of sobriety that Alcoholics Anonymous was founded. Within these groups individuals learned that they shared a certain experience of alcoholism, that this shared experience gave meaning to their stories, and that it was this common meaning that gave them the strength to put order into their personal lives.

6The mutual self-help model was adopted and adapted by the first patient organizations created in the 1940s and 1950s throughout North America and Western Europe around chronic diseases. At the heart of this model the sharing of experience is both a principle of identity and an epistemological claim: it is what endows a patient organization with a collective identity, and with its own competences and prerogatives vis-à-vis medical professionals. Calling for their shared experience to be recognized as a genuine form of expertise is a vehicle for patients' empowerment.

7The idea of empowerment was to take on a more radical meaning through a number of criticisms that emerged in the sixties and seventies against the very principles of self-help-mutual-aid. These principles were criticized for causing people to turn in on themselves, in two ways:

  • first, the over-individualistic nature of people's membership of these groups. Due to their mode of constitution and functioning, these groups were said to be nothing other than collections of individuals who may have shared the same problems and experiences but who, in a sense, did not form a collective with real power and a project. From this point of view, some considered that Alcoholics Anonymous and the first self-help groups created in their wake were not a sufficiently clear departure from the institution against which they had been formed: psychiatry (Emerick, 1996);
  • second, the fact that these groups did not move into the public sphere and discuss the structural causes of their problems, around which collective mobilization had to be organized, with professional and political authorities. They challenged the fact that the people concerned dealt with their difficulties themselves, and that these difficulties were consequently maintained in a private sphere extended to include others with the same problems.

8This criticism led to the emergence of new kinds of groups, which based their philosophy on the new social movements that began to spring up in the US from the 1960s. These groups were formed to represent and defend categories of the population who were stigmatized or excluded because of their condition. Their aim was to assert their members' collective identity in the public sphere, and to call on the political authorities to take specific actions guaranteeing their rights and interests.

9The advocacy groups were particularly sensitive to the medical profession's threats against their identity, which they were striving to assert and defend. The disability studies movement clearly illustrates this attitude. Led exclusively by disabled persons, it was both a new social movement (Dowse, 2001) and a social science research movement, which developed its own disability theories to serve the identity and cause of its members. Disability studies constitute a plural movement but all, to a lesser or greater degree, share the same conception of their relations with knowledge and biomedical activities. One of the political and epistemological manifestations of disability studies is concerned individuals' demand to be "the" legitimate producers of knowledge on situations of disability. It is thus the precedence of individuals' subjective experience over any objectifying knowledge, especially medical knowledge, that is asserted. The people who promote these lived experiences are often anthropologists or sociologists who apply certain narrative techniques to highlight the "lived" aspect (Murphy, 1990). It is the individual him- or herself, the only subject and object of his or her own experience, who is the subject and object of these narratives. The accent is on the construction of an individual who, through his or her otherness, has the cognitive and moral authority to challenge the normalizing knowledge and practices of mainstream medicine. This is why we can consider these groups as opponents of (bio)medicine and its interventions, which they see as an institution of social control (Zola, 1986). This is not strictly speaking a rejection of any form of institutionalized knowledge, but a specific refusal of certain forms of supposedly alienating knowledge. Stuart Blume (1999, 2000) clearly shows this in his research on deaf communities who refuse cochlear implants and want their deafness to be recognized as a non-negotiable element of their individual and collective identity. Their refusal of medicine and its technologies is not an opposition in principle to any scholarly knowledge and any form of research, but a refusal of certain corpuses of knowledge and of interventions which, by wanting to correct the disability, could cause the disabled individuals' disappearance as people with a different identity and lifestyle. The deaf communities that Blume studied refuse hearing aids but do draw largely on linguistics and socio-linguistics to show that sign-language is a language in its own right. It is through this language that the stigma is reversed and that these deaf people can say, positively: 'Deaf we are and deaf we shall remain'. One could therefore say that advocacy groups contribute substantially towards people's empowerment - an empowerment which, in their opinion, traditional self-help groups have failed to seek because they are too preoccupied by mutual aid and therefore not active enough in the political assertion of their own identity and knowledge.

10The scientific and therapeutic activism of certain patient organizations, which appeared in the 1980s can be considered as an inverted form of the mechanisms of patients' empowerment found in advocacy groups. The characteristics of the diseases and the conditions around which this activism is organized play a decisive part. Most often these are new, lethal diseases and/or ones on which knowledge is uncertain or insufficient, or diseases that had been forgotten or were largely unknown, or even conditions whose status as diseases is not recognized. Aids, rare genetic diseases, and emergent diseases related to environmental problems are typical examples. These are diseases and conditions which, at some point in their history, are on the fringes of nosological fields or even entirely absent from them. Their medical, social and political recognition is weak or even non-existent. The individuals concerned by these diseases or conditions are confronted with three difficulties:

  • the lack of medicine's cognitive and moral authority faced with situations about which it knows little or has difficulty treating;
  • in certain cases the absence of recognition of their status as patients;
  • the difficulty, for the same reason, of forming groups of people with the same condition.

11It is understandable that, faced with these difficulties, the people concerned first have to obtain recognition of their diseases before they can emerge from the shadows and call on specialists.

12Not all conditions are equal in this respect. The first task of the persons concerned and their organizations is nevertheless always to work at objectifying their conditions, that is, to demonstrate their existence in order to make them identifiable so that they can be discussed. This is why they consider researchers as special partners (Rabeharisoa, 2003). Many of these organizations impute the medical profession's negligence to the absence of reliable and applicable knowledge on their conditions. Mobilizing research to equip practitioners better therefore appears to be a natural way to demonstrate the existence of the disease. For example, workers at Boeing, who suspected that their jobs were the cause of Multiple Chemical Sensitivity, asked specialists in medical imagery to show images of their brains as evidence of the objective nature of their ailments (Dumit, 2006). The AFM is likewise engaged in a long and complex process to locate and identify the genes responsible for neuromuscular diseases (Rabeharisoa, 2006). By forming this partnership with the scientific community - a relationship not devoid of tension -, these organizations momentarily by-pass the powerless medical profession, to medicalize their conditions better.

13These few historical facts show three phenomena relative to the role of patient organizations is staging, weighting and circulating experience and knowledge. First, this role is consubstantial with the birth and development of patient organizations. The focus on this subject in recent years is probably related to the growing recognition of this role by scientific and medical institutions as well as political authorities. Second, in practice this role, now currently called the "lay expert", encompasses a variety of configurations. Depending on the characteristics of their conditions, their objectives at a particular point in their history, and the positions that they wish to defend, patient organizations may draw on different forms of their own lived experience and on certified knowledge, and may align, oppose or link them. Third, patient organizations are interested not only in the collection, formatting and dissemination of knowledge and experience data on their diseases, but also in subjects relative to the organization of healthcare, social benefits and patients' rights, and what may be contradictory standpoints between specialists or between policy-makers. In the following section we examine the frameworks of analysis mobilized by social scientists to examine these different aspects.

Definitions and uses of the notion of "lay expertise"

14The first corpus of literature is drawn from or inspired by research in science and technology studies on the place of users, citizens or lay persons in scientific and technical activities and debates. A growing number of studies show that the technosciences are no longer the preserve of specialists, and are invested by groups of "ordinary" people who demand the right to know and to be involved in the definition and implementation of scientific and technical activities. These studies focus on the emergence and development of "lay expertise". For the historical reasons set out above, the medical and health fields have become ideal sites for observing this lay expertise.

15This literature primarily concerns the nature of patients' knowledge and know-how which enables them to engage in dialogue with specialists, and on the basis of which they may propose new subjects of investigation or even contribute to knowledge production.

16A traditional conception of patients' competencies is based on the assumption that patients adopt social representations of diseases. The famous doctor-patient relationship at the heart of the clinical tradition is based on the figure of a patient made vulnerable by his or her disease, who can rely on the doctor's moral and cognitive authority to analyse and solve his or her problem (Freidson, 1984). The use of social representations, a concept originally borrowed from psycho-sociology, was intended to give the passive and powerless patient some leeway. In their dialogue with their doctor, patients have their own representations of the disease, derived from society's discourses. They are consequently not unequipped when faced with the doctor; on the contrary, they do have these representations which shape the reality of the disease and which the doctor therefore has to take into account. Authors like Kleinmann (1988), for example, have proposed two distinct notions: first, "disease", to denote the medical disease-object; and second, "illness", to talk of the social disease-object. The success of this dichotomy is manifested in professionals' recurrent use of social representations. They enable them to add the human work of taking the individual and his or her social and cultural environment into account, to the technical work of treating the disease. This dichotomy has lasted for a long time and remains a sort of reassuring anthropological truth that we find expressed in various forms. The work of Sylvie Fainzang (Fainzang, 2001) on differentiated uses of medication and prescriptions, depending on whether the patients are Protestant, Catholic or Jewish, is a recent illustration.

Patient organizations as "lay experts"

17Many situations have had the effect of undermining this model of social representations and replacing it by one in which patients contribute to the production of knowledge that is complementary to formal knowledge, to discussing its relevance, and to objectifying imperceptible phenomena in the current state of knowledge. This participation is intended not to produce knowledge for its own sake, but to support and justify social demands, some of which may be completely new. In general, the term "lay expertise" corresponds to two inter-related movements: first, the extension of the list of actors who participate in the elaboration and discussion of scientific and technical knowledge to people or groups that are concerned but not specialized (Bailley et al., 1999; Brown, op.cit.; Callon et al., 2001; Collins and Evans, op.cit.; Wynne, 1996); and second, the invention, by these persons or groups, of new objects of investigation and collective interest (Brown, 1992; Rabeharisoa and Callon, 2004; Rabeharisoa, 2007; Zavetoski et al., 2004). The exact meaning of the concept is nevertheless still somewhat ambiguous and has been the subject of many debates.

18Lay expertise relates, first, to patients' ability to use and to format scientific and medical knowledge that is congruent with their own experience and claims. The development of such expertise is possible when patients become aware of the multiplicity of certified knowledge and sometimes the divergences or even contradictions between specialists, as well as the doubts that debates between specialists cast on existing knowledge. Based on such expertise, patients take a stand, in a sense, in the controversies between experts. The mobilization of Aids organizations, demanding that new molecules be made available rapidly for patients, clearly illustrates this situation (see Barbot, 1998 for the case of France and Epstein, 1995, 1996 for the case of the US). In his book Steven Epstein (1996) shows how, faced with the multiple factors and pressures which structure the conduct and meaning of a clinical trial (methodological and jurisdictional disputes between clinical researchers and biostatisticians, the social construction of hype, the marketing strategies of pharmaceutical companies and the incentives to which they respond, the complicated role of practising physicians in interpreting the data produced by clinical trials, etc.), certain activists succeeded in being credible speakers about science. They did so, in part, in the language of biomedicine to demand that molecules be made accessible to them on the basis of their perceptions. In this way they managed to obtain acceptance of the rate of CD4 as surrogate markers of the disease, as well as the implementation of compassion trials. Steven Epstein shows the long process in which patients learn about and appropriate science, from the reading of scientific articles to participation in specialized conferences. At Act-Up New York this process even led to a temporary scission between "lay experts" and "lay lay" patients within the organization, in which the latter accused the former of losing sight of their identity as patients (Epstein, 1995).

19Other examples show that patients can play an active part in the emergence and constitution of knowledge on their diseases. Hilary Arksey (1994), borrowing Ludwig Fleck's idea of interaction between an esoteric circle (composed of specialists in a field) and the exoteric circumference (composed of educated and uneducated lay persons) in the development of medical knowledge, shows that in the case of the constitution of knowledge on RSI (Repetitive Strain Injury), it is mainly patients who train the esoteric circle. RSI is a syndrome whose very existence is a controversial issue. So that doctors can accept its reality and the fact that it is due to people's working conditions, patient groups have appropriated the scientific and medical literature. Their objective is twofold: to equip patients for consultations, and to inform doctors on the syndrome:

The idea developed by a number of support groups to provide members with a list of key questions that firstly the doctor should ask of them, and secondly they should ask the doctor. This was initiated because it was felt that many practitioners were divorcing the disorder from work-related practices, which in turn hindered diagnosis. In this type of patient-initiated clinical consultation, lay persons introduced doctors to a different way of thinking : one which included occupational illnesses in general, and the RSI syndrome in particular. (op. cit. : 455).

Group organizers had produced an information pack containing medical information which they asked sufferers to give their GPs and consultants, in the hope that the material would be disseminated amongst all practitioners in the health center, clinic and the like. Albeit a slow process, in the previous year, local doctors had in fact started to 'refer' patients to the support group. (op. cit. : 456).

20To provide evidence of the existence of the syndrome, patient groups have undertaken surveys to identify sufferers and produce statistics which challenge those of the specialists. This "politics of numbers" is current practice in many organizations, especially those concerned by rare diseases (Rabeharisoa, 2006).

Patient organizations as "experts of experience"

21Some have pointed out that such lay knowledge is an oxymoron (Prior, 2003), for it conceives of people's experience only in relation to biomedical knowledge, and therefore strips it of both its specificity and its authenticity. Contrary to this first conception of lay expertise, a second definition puts the accent on the value attributed to individuals' experiences. As we saw in the preceding section, the patient organizations that were formed on either the self-help group model or the advocacy group model format and use their experience in different ways and with different aims. The former, most of which were formed around chronic diseases, draw on the shared experience of the disease to live better with it and to exchange the ideas and solutions experimented by patients to deal with and solve their problems on a day-to-day basis. In these cases the mobilization of experience can be likened to what Michel Foucault (1994) called "techniques of the self". The aim of the latter is to value the singular experience of each individual as knowledge that cannot be reduced to scientific knowledge, in order to fight what they see as normalization imposed by medical power. The recent literature on the subject shows that these uses of patients' experience still exist. It also highlights the organizations' ability to mobilize this experience in order to bring to the fore problems on which they can produce data not found in formal knowledge. Mary Anglin (1997), for example, reports a sort of inversion of knowledge relationships between patients and specialists in the case of breast cancer:

Women with breast cancer have for the past twenty years been teaching the biomedical community 'new tricks' in the form of discussion, confrontation and testimony concerning research on cancer, as well as ex ante methods of detection and treatment for the disease.

22Even if the author does not detail the processes mobilized by the activists to teach the specialists "new tricks", she does show how the pioneers of this movement made their personal experience of the disease and their encounter with the medical system public, thus helping to make breast cancer a political problem.

[...] all four women presented their own histories in accounts which did not separate the physical and emotional experience of breast cancer from detailed information about the status of scientific research and clinical procedures. (op. cit. : 1405).

23The movements that subsequently developed in the 1990s continued these "narrative" strategies around three forms of action:

  • writing and film-making about the personal and politicized experience of breast cancer;
  • support groups where women come together to exchange personal histories and information about experimental treatments, physicians to seek or avoid, and making it through chemotherapy;
  • formation of breast cancer organizations which draw upon the collective experiences of their constituencies and which press for change at the level of state and national legislatures, as well as the treatment experience of individual women.

24Other examples show the work undertaken by patient organizations or groups of persons concerned by a health problem, to produce knowledge based on their experience or observations. In our study on the history of the AFM (Association Française contre les Myopathies, the French muscular dystrophy association), we have shown that by establishing a primitive corpus of knowledge based on patients' experience, the association was able to interest specialists and to trigger research on these rare and largely unknown diseases (Rabeharisoa and Callon, 1998, 2004). The notions of "popular epidemiology" (Brown, op.cit.; Wynne, op.cit.) or "lay clusters" (Calvez and Leduc, 2006), for example, relate to the collection and formalization of cases (rare cancers, animal deaths) which could be evidence of diffuse industrial pollution whose effects are felt only in the long term.

25Unlike situations in which patients and their organizations try to acquire formal knowledge so that they can dialogue with the specialists, thus assuming a position of "lay experts" in debates, in these cases the organizations are more in a position of "experts of experience", to use a current term in the associative community.

26These two forms of expertise are not necessarily mutually exclusive. We have distinguished them to clarify the multiple definitions and uses of the concept of "lay expertise", and thus to highlight the more conflictual nature of expertise based on patients' experience. It is by enriching, testing and even opposing scientific expertise, deemed in certain cases to be insufficient, weak and even irrelevant, that patient organizations position themselves as "experience experts". These situations cause much friction between patients and specialists (Allen, 2003 ; Goldner, 2004 ; Kroll-Smith and Floyd, 1997 ; Radin, 2006 ; Shakespeare, 1999). The empirical cases in the literature show that expertise based on patients' experience does not always enjoy the same authority and legitimacy as scientific expertise, not only with specialists but also with the public authorities. Although it is sometimes recognized as an illustration or expression of real phenomena, it is not readily acknowledged as a corpus of knowledge on which decisions can be based. It is said to be too partial, tainted with subjectivity and even with ulterior motives. Simpson (1996) shows, for example, that for a long time doctors have considered that the third-day depression that patients say they experience after a heart operation is not an objective fact but the expression of a victim mentality with which patient groups inculcate their members. Arksey (op.cit.) highlights the strong resistance of specialists who point to the economic and social implications of recognition of RSI to call for extreme caution as regards what patients say, and even denounce their so-called manoeuvres to obtain large compensations. These important findings warrant more in-depth empirical investigation of the tools, devices and instruments that patient organizations adopt to establish the robustness of the knowledge and experiential data that they collect and diffuse, and the legitimacy of their claims (Rabeharisoa and Callon, 1998; 2004).

Governance of knowledge, governance of health and medicine: POs as stakeholders

27A second corpus of literature examines the role of POs in staging, weighting and circulating experience and knowledge, in relation to the governance of knowledge and that of health and medicine. The question of governance is recurrent today in reflection on the transformations of medical research and health policies, at both national and European level. To assess the scope of this question, it is useful to consider the notion of governance in its original setting: the theory of firms.

POs as stakeholders in health policies and medical research

28The theory of firms shows that firms can interact and collaborate with different categories of economic agents, especially workers, managers and shareholders who appear to have different interests. The firm is moreover a risky collective action since the risks taken by the different economic agents are not all of the same nature. Firm theory emphasizes the "residual risk", that is, a firm's risk of bankruptcy, which it assumes is accepted only by the shareholders. What is called "corporate governance", in the strict sense - and here we can use the definition of Schleifer and Vischny (1997) - is the set of all the mechanisms for safeguarding the shareholders' capital. But since the notions of investment and risk have been expanded, so has that of governance. Following a series of financial scandals, the idea has prevailed that every "stakeholder" takes a risk, either deliberately, through investments in financial or human capital, or unwittingly, through the firm's activities. An example is the risk run by workers in the chemical industry, exposed to toxic substances that can cause lethal diseases. We can therefore define corporate governance, as Gadrey (2000) suggests, as the "mode in which decision-making power and control are exercised within the firm, along with the management tools accompanying them" (op.cit.: 183 - our translation). Even though we would need to follow the successive migrations and translations of this concept step by step if we wanted to be really rigorous, we can see that this broader meaning has made it transposable to both the corporate and the institutional worlds. This explains the extensive use of the stakeholder concept to qualify patients and their representatives faced with scientific and medical institutions and with the diverse stakeholders in the medical and healthcare fields. Two main arguments are used to back up this use.

29The notion of a stakeholder means first that patients are not simply the “objects” of knowledge, care or experimentation, in the hands of researchers, doctors or pharmaceutical firms. They are directly concerned by the actions undertaken on their behalf, in so far as they are supposed to be the beneficiaries and that they sometimes pay a personal price for the risks involved in those actions. It is therefore fair that the organizations representing them be considered as stakeholders is the medical and healthcare fields, and that they be entrusted with a share of the decision and control power in these fields, on an equal footing with biomedical institutions, pharmaceutical firms and health administrations. This finding is moreover consistent with POs' claims. This reasoning leads naturally to a description of patient organizations as pressure groups that strive to defend their interests with regard to professional and political authorities (Bastian, 1998; Beard, 2004).

30A second argument relates to the question of the democratization of science and technology. Not only do patient organizations have a legitimate say in the definition and implementation of health policies, for the reasons set out above, they also have the cognitive authority for that purpose in so far as they have the experience of the diseases concerned, needed to understand and deal with their situations. This argument is consistent with the "epistemological" claim of patient organizations mentioned above. It is the reason for which they are now considered as stakeholders not only in the making and implementation of health policy, but also in the programming and implementation of research on their diseases. Whether the motivations are utilitarian (taking advantage of patients' experience to improve research) or moral (associating patients in research on their diseases), there is a proliferation of slogans that bracket together science and governance, science and citizenship, science and participation.

31Studying the new forms of governance of medical research and health policies implies analysis of:

  • the mechanisms through which the stakeholders are identified, especially patient, healthcare user or citizen organizations which are, or demand to be considered as stakeholders;
  • the procedures through which the various stakeholders' interests are expressed, especially the ways in which information and data advanced by the various stakeholders to justify their interests are taken into consideration;
  • the modalities of sharing and exercise of power between the various stakeholders, as well as the control mechanisms to ensure that prerogatives are respected and that everyone's interests are preserved.

32Our finding is that although this theme of governance is present in the actors' discourse as well as in that of social scientists, empirical cases enabling us to document the above three aspects are rare and often fragmented. Existing publications do however enable us to point out the shortcomings that need to be remedied.

POs and the governance of health and medicine

33The healthcare institutions in many European countries have expressed their wish to engage patients and citizens in monitoring the quality of health services and determining policy priorities. In her research on Patient Forums set up by the NHS in the UK, Angela Coulter (2004) examines the representativeness of the groups invited to participate in these forums. This question of representativeness relates to that of the mechanisms of identification of stakeholders from the "patients' world", deemed to be able to legitimately talk on their behalf. Can we consider that patient organizations, often formed around particular diseases, are representative of all patients? What about organizations that receive most of their funding from the pharmaceutical industry, or those created and run by professionals? Are they not the Trojan Horses of firms or medical professionals? How should patients who belong to no organization be represented? In light of these questions, often raised by institutional leaders, the author concludes that the next step would be "[...] to supplement the surveys of patients' experience with robust techniques to identify citizens' views on healthcare priorities to ensure that the public involvement programme has a sound evidence base on which to build", without actually providing leads and clues on the terms of reference that these "robust techniques" should adopt.

34Liam Donaldson (2003) has studied another NHS initiative, the ten-year Chronic Disease Self-Management Programme, launched in 2000 and based on a coalition of patient organizations, the Long-Term Medical Conditions Alliance. The general philosophy is that patients who are "experts of experience" should be able to put it to the service of other patients so that they can cope with and control their diseases better. The author gives no details on the way in which this expertise is constituted and formalized under the programme, nor on its effects on the organization of care for chronic diseases. The reader is likewise left in the dark as to how exactly this way of enabling patients to "take responsibility" has been discussed and defined as an objective shared by the different actors of this programme.

35Tritter et al. (2003) analyse a third practice set up by the NHS: focus groups consisting of users and moderated by members of voluntary organizations, the aim of which is to enable individuals to express themselves on the quality of cancer services. The NHS provides funding for the moderators' training. The authors show that the constitution of these focus groups is not clear. They can hardly be differentiated from support groups, and sometimes become places for simply lodging complaints against the practices of certain professionals. As a result, neither the participants nor the professionals are fully satisfied with this initiative. In fact, we have the feeling that by imposing focus groups as a framework for reflection and action, the administration leaves users with little leeway to define what they see as the most appropriate forms of involvement.

36Apart from these examples, various devices exist in different European countries to include patients and their organizations as stakeholders in health policy-making. The literature on these devices is nevertheless limited. It provides few empirical data that can be used to document the mechanisms of stakeholder identification, the procedures implemented to enable them to express their interests, and the modalities of sharing and exercise of power between the various stakeholders. In particular, the cases published say little about the constitution, formalization and legitimization of patient expertise within these devices. As a result, certain issues are treated in general terms, without being documented or resolved. An example is the representativeness of the patient organizations that participate in these devices. This question could be reconsidered, taking into account the fact that these organizations are not representative of the "patient world" in the traditional sense of representation; they are actors with specific expertise on a particular subject, expertise which makes them legitimate as stakeholders alongside other institutional actors.

POs and the governance of medical research

37Many researchers today argue for patient organizations to be considered as stakeholders in medical research, and for their expertise to be taken into account in the elaboration of research programmes (Entvistle et al., 1998; Popay et Gareth, 1996). Few have examined the actual conditions and mechanisms of patient organizations' participation in the programming of biological, clinical or therapeutic research. In the US, several authors have studied advocacy research. The work of Rebecca Dresser (2001) is a reference in this respect. She has analysed the procedures through which patients are involved in resource allocation for research on diseases. The following illustration of the way in which patient organizations constitute pressure groups during budgetary negotiations in the US is enlightening:

Every year, a US congressional subcommittee hears testimony in a place unofficially known as Mother Teresa's Waiting Room. In April 1999, a reporter described the scene : 'Here, for three days this week and two days next week, the sick and afflicted and their lobbyists are gathering in an annual telethon of sorts : the competition for research financing to cure diseases. Hundreds of ailments are represented, from the most common cancer to the rarest genetic disorder. Even erectile dysfunction received a mention'. The demand for time to testify is so high that just one of every three applicants - chosen by lottery - is permitted to appear, and then for only five minutes. (op. cit. : 73).

38A great deal can of course be said about the asymmetries that such a procedure is likely to cause between different pathologies. But Rebecca Dresser's analysis is particularly interesting in so far as she focuses on the multiple alliances between researchers, lobbyists and patient organizations to defend certain interests, as well as the institutional mechanisms set up to express those interests.

39Certain organizations' capacity to raise funds for research is another phenomenon often mentioned but seldom analysed. With a few rare exceptions (Kahane, 2000; Rabeharisoa and Callon, 1999), few empirical studies have been devoted to the impact that patient organizations' money has on the programming of research.

40Apart from the question of funding, several studies have highlighted the active role of certain patient organizations in the negotiation of research orientations. In our study of the history of the AFM, we have shown how the association has set up working groups consisting of patients, doctors and biologists to discuss patients' experiences and translate them into research subjects (Rabeharisoa and Callon, 1999). One of the consequences of this triple alliance is that the association has gradually developed competencies and prerogatives which have enabled it to propose a Genome Plan to the French government. This plan was approved in 1996 and has resulted in the creation of a research park near Paris where laboratories, firms and the AFM work together. Of interest here is the gradual invention of new forms of institution within which the various stakeholders negotiate their interests and collaborate around common projects. The Genetic Alliances that have developed in the US (Heath et al., 2004) and in the UK are examples of such institutional inventions.

41In the above-mentioned examples, the organizations' capacity to undertake research themselves is essential, for it is on the basis of this own expertise that they are legitimate partners in negotiations and collaboration with institutions. Pierre Lascoumes (2003), both political scientist and activist, shows that the partnership between institutions and patient organizations can function only if the latter are mobilized in three main respects: the collection of information on the pathologies and on people's needs; the collective analysis and autonomous problematization of the situations observed; and the work of globalizing the cause and seeking alliances. In the same spirit, the Fondation des Sciences Citoyennes shows the variety of modalities through which patient organizations intervene in knowledge production, and which enable them to be both partners of the institutions and actors in their own right: occasional mobilization of voluntary experts; scientific watch and writing syntheses; commissioning of studies; expert assessments or original research studies, etc. All of these forms of intervention, which imply the extension of the concept of research to what Michel Callon et al. (2001) call "research in the wild", warrant in-depth empirical research.

Future directions for reflection

42This brief literature review highlights some potentially fruitful directions for reflection, as well as phenomena and practices that have received little attention and on which dialogue with the actors would be particularly enriching.

43First, our feeling is that the notion of "lay expertise" should be considered in the light of current transformations in patient organizations' positioning vis-à-vis experience and knowledge. "Lay expertise" originally referred to medical expertise that lay people gained from their experience on the disease. This notion has now come to encompass POs' capacity to collect, synthesize and circulate various sorts of information, as well as their ability to design and conduct their own investigations on an extended range of issues from diagnosis delivery to provision of care, medication, patients' rights, etc. (García-Semperea and José Artells, 2005 ; van Grootheest and de Jong-van den Berg, 2004 ; Health Action International Europe - HAI, 2005). Today, "lay expertise" largely overflows patients' experience: it constitutes a body of hybrid knowledge between patients' experience and professionals' expertise. It would be interesting to figure out how and to what extent this hybrid intermediary knowledge impinges upon medical practices and expertise, and transforms patients' authority and legitimacy within or vis-à-vis the medical space.

44Second, we should move forward on the somehow broad and fuzzy issue of governance. Today, we are witnessing the emergence and development of initiatives and actions, some of them experimental, by institutions which aim at integrating patients' experiences into research and care programmes (e.g. the various initiatives taken up by the NHS in the UK, INSERM in France, plus a few intermediary bodies which also investigate and circulate patients' experiences on drugs and therapeutics, especially in chronic diseases). This institutionalization of experiential knowledge is a new and under-studied phenomenon. It would be interesting to further our understanding of its conditions and rationale. At the very least, we can say that it is the locus of mutual learning between patient organizations and institutions.

45On the basis of these findings, we have proposed three sub-themes for the conference:

46Modes of production, collectivization and circulation of information related to patients' experiences (experience of the disease, and experience of the medical environment). Patient organizations are actively involve in collecting patient narratives, conducting surveys (Yaphe, Rigge, Herxheimer et al., 2000), organizing workshops both for their members and for professionals, circulating various information through their websites, and so on. For what purpose do they increasingly engage in these information activities? What sort of information do they collect or produce? How do they validate and formalize information? To whom do they circulation information? To what extent does such "knowledge brokering" impact on patients' own experiences?

47Hybrid intermediary knowledge and empowerment. Our hypothesis is that hybrid intermediary knowledge transforms the nature and modalities of claims that patient organizations can put forward. On what issues, and how, does hybrid intermediary knowledge help patient organizations to express their views? How do patient organizations help their members to put this knowledge to use? How does hybrid intermediary knowledge impact upon patients' empowerment?

48Forms of institutionalization of patients' experience. Some medical institutions are currently working towards the inclusion of patients' experiences into institutional actions and decisions, and patient organizations are publishing their experiences in medical journals (Logeais, 2003; Rose, 2003; Bach Kolling-Dandrieu). It would be interesting to document these initiatives and actions, and to reflect upon the opportunities they offer, but also the constraints in which they are caught.


Providing information and guidance to the patients: the role of patient associations

49Dominique Dufournet, France Acouphenes

50Thank you for inviting our association, France Acouphenes, to explain the difficulties we meet with the medical profession, mainly when we have to directly respond to our members and/or to people who have tinnitus.

51I would first like to explain what tinnitus is. I will then describe in a few words our actions, and the problems we have to deal with, in particular with the answers we provide through our helpline.

Tinnitus: an affection mostly ignored in the medical field

52Tinnitus is the perception of sound in the human ear in the absence of corresponding external sound(s). Tinnitus can be perceived in one or both ears or in the head. It is usually described as a ringing noise, but in some patients it can take different forms

53Tinnitus is not itself a disease but a symptom resulting from a range of underlying causes (around fifty different causes). It is very often linked to loss of hearing. The brain does not tolerate emptiness, so we suspect it replaces the sound previously heard by a signal. Other causes include specific diseases such as the Meniere syndrome, ear infections, ear damages caused by loud noises. Tinnitus is also a side-effect of some oral medications, such as aspirin.

54People suffering from tinnitus used to be the elderly, above sixty, but we unfortunately have to admit that more and more young people are affected by tinnitus. The sound perceived may range from a quiet background noise to a signal loud enough to drown out all outside sounds. The term 'tinnitus' usually refers to severe cases, when tinnitus is chronic and induces difficulties, and this concerns 300,000 to 500,000 people in France

55Tinnitus is often defined as a subjective phenomenon. It is difficult to measure with objective tests, such as comparing it to noise of known frequency and intensity that can be assessed by an audiometric test. The condition is often clinically rated on a simple scale from "slight" to "catastrophic".

56Because tinnitus is a symptom (not a disease), is subjective (difficult/impossible to measure) and because there is no curative treatment (the medical professionals can only help the patient to accept it and/or decrease the intensity) it is not really taken into account by the medical profession. The only medication that received an official authorisation in the indication of tinnitus in France is a vasodilator (Vastarel). After our experience, most of the patients say that it doesn't help at all. Some doctors prescribe tranquilizers or antidepressant, which is justified in some cases to avoid the vicious circle 'having tinnitus and so being depressed, and when being depressed increasing the risk of concentrating on tinnitus which will become more intrusive'. Tranquilizers and antidepressant do not cure tinnitus, they are given to make it easier to learn how to live with tinnitus.

57For people who are affected by tinnitus and for our association, the way it is ignored in the medical field is the main concern.

Providing information: an important part of our mission

58Therefore, providing information on tinnitus takes an important part in the activity of our association. Information is given through two kinds of media: written material and direct information to people.

59France-Acouphenes publishes a quarterly magazine, which is the only source of information on tinnitus and related disorders or syndromes addressing the general public. Its "quarterly reports" are endorsed by the association's Scientific Committee. Among the existing therapeutics the magazine talks of are sophrology, osteopathy, fasciatherapy, medicinal treatments offered by traditional medicine, homeopathy, Chinese traditional medicine (M.T.C.), Tinnitus Retraining Therapy (T.R.T.), behavioural and cognitive therapies (T.C.C.), etc. The magazine proposes a regular point on the progresses of basic research developed in France (INSERM of Montpellier) as well as abroad. One of the last "quarterly reports" published by the magazine was on the effects of heat in the summertime on tinnitus under the supervision of an ear specialist from the European Hospital in Paris.

60In 2006, we also issued a book entitled “Tinnitus” and a Practical Guidebook written by our vice-President and prefaced par S. Chéry-Croze who is senior researcher at the CNRS and a founding member of the association.

61For the direct information to people, we have help lines and a forum on our website. It is important to us that the volunteers who ensure the phone assistance service and who regulates the chats on the forum have a regular training. The trainings are made by a member of the board who was teaching at the National Health School (Ecole Nationale de la Santé) and we use to invite ear specialists to take part in the trainings.

Problems we have to deal with

62People affected by tinnitus sometimes think they have no solution, except for calling France Acouphènes, to find help in their search for a treatment able to cure their tinnitus. Some doctors even give our phone number to their patients.

63A large majority of the calls received by France Acouphènes are complaints about the medical profession, about the vasodilator treatment and/or about the side effects of the treatments they receive (for instance the sedative effects of tranquilizers) or about the lack of treatment proposed by the doctors.

64Through the help line, we consider we have three missions:

  • First, we give the patient something that only a limited number of doctors can give, which is to allow them to speak to a person who experiences tinnitus, and above all to be listened to by someone who experiences tinnitus. To us it is important that the persons who hold the phone assistance services say 'I have tinnitus, I can understand you, tell me about your tinnitus'.
  • The second important mission is to provide information, to reassure the patient about his/her health condition: 'You are not driving mad, hundred of thousand people live with tinnitus, and there are ways to help you live with it.'
  • The third mission - when this has not been done - is to invite the patient to see an ear specialist in order to establish a complete diagnosis.

65After there are still questions for which providing an answer is difficult:

  • Is my doctor completely wrong?
  • What medication should you suggest for me?
  • What do you think of alternative types of treatments: Chinese medicine, acupuncture, homeopathic medicine, etc.?
  • Could you give me the name of a specialist in my own town?

66One of the solutions France-Acouphenes is considering consists in having a dedicated ear specialist within the association, in particular to help the volunteers who bring direct information to patients through the help line or through the forum. This has already been experienced, in Germany for instance, where a doctor answers to patients on the help line. We are currently negotiating with the Ministry of Health to improve our helpline.


67To conclude, I would like to say a few words about a recent problem we had. There are more and more young people who experience severe hearing damage from loud noise (concerts, rave parties, night clubs...). Suffering from tinnitus, hyperacousia or loss of hearing represents a real break in their lives. As they receive very little help and barely find solutions to the problems they are facing, they sometimes develop a feeling of deep anger against society. Last year, through our forum, one of them suggested organising a demonstration with a sit-in and even more (if needed) in front of the Ministry of Health to boost up the decision to allocate money for tinnitus, complaining that their suffering was not taken into account. Even though we understood their anger and fully agreed with their requests, we convinced these young people that their demonstration will not help our association at all in our negotiation with the Ministry of Health. This example shows the kind of difficult position we have to deal with.

How to make a disease exist? The role of patient organizations in the construction of pathologies

68Carole Robert, Fibromyalgie France

69I am the chairperson of a French national association of people concerned by fibromyalgia, Fibromyalgie France1. I'm going to talk about the work that we are doing to build up knowledge on this pathology. Our aim, as patients, is to have a better understanding of what is happening to us but also, and above all, to obtain recognition for this pathology by the medical community and the public authorities. As you will see, we have had contrasting results: we have started to raise the interest of some actors, but it seems that we continuously have to start this work all over again. There have been few concrete outcomes in terms of research, treatments or social benefits.

70Therefore, my main question is: what needs to be done for the patients to be heard, for the data that they collect to be taken seriously, and for real collaboration to be initiated with the medical community?

71Fibromyalgia is a highly controversial pathology in France, even though the Académie Nationale de Médecine (National Academy of medicine) recently published an expert report recognizing that it is not a psychiatric condition. The report concludes with the necessity to undertake genetic studies, to take into account environmental factors and to develop clinical research, particularly in cerebral imaging.

72It is important to note that fibromyalgia has been classified by the World Health Organization in rheumatology since 1992, and has been coded as such in 2005 (M79-7 = fibromyalgia). The prevalence is estimated at 5% of the population, which represents 3 million people in France and 23 million in Europe!

73When our national association Fibromyalgie France was founded in 2001, we had little understanding about our own condition - and it was difficult for us to describe it to health professionals. What were those pains, the feeling of having our muscles caught in a vise, this persistent fatigue, this inability to maintain an effort -not to mention the many associated disorders-? The medical profession was dubious and sceptical, and often referred us to psychiatrists.

74To enhance our credibility, we decided to undertake an in-depth survey of the members of our association. We sent them a questionnaire on their family, social, professional and geographic environment, as well as their eating habits, the history of their disease, their behaviour before and after the onset of the disease, their reaction to stress, the location of pain in their body, their food and drug intolerances, fatigue, sleep and so on: a total of 16 very dense pages of diverse questions. We showed this questionnaire to a rheumatologist who supported our approach.

75The results of this survey enabled us to understand a lot about patients' daily lives. In particular, it helped us to talk "with a single voice" about the patients we wanted to represent to institutions. Who, apart from the patient, can better describe what he or she is experiencing, especially concerning a disablement that is said to be invisible and is hardly understood or even recognized.

76Although they were not scientifically validated, the statistics that we produced helped us to argue our case, to alert people about the observed similarities, and to generate awareness. We wanted to persuade "fibro-sceptics" and to ensure that fibromyalgia would no longer have so little value in the research community.

77The survey results were disseminated widely: the Ministry of Health, the national health agency (l'Institut National de Veille Sanitaire), the Senate and the National Assembly, among others.

78Yet - and this is the first limit of our action - we have never been informed of how these data were used, even though these institutions seemed to be very interested in our work!

79We then tried to be more specific and to address a particular question likely to interest the public authorities. We "triggered" a partnership with the Director-General of Health, with who we were regularly in contact. We wanted to know what drugs were prescribed for fibromyalgia and we wanted to ensure that the right to information and the regulations on therapeutic trials were properly respected, since fibromyalgia patients are ready to take anything - even purchased via the Internet - to relieve their pain. We haven't received any response from the Ministry since the Director-General of Health has resigned.

80After these first efforts concerning knowledge about the disease and possible or actual treatments, we turned to the third aspect of our work: the socio-economic coverage of the disease. In an attempt to more fully grasp patients' difficulties - again, to be able to argue our case in a credible and informed way - we undertook an internal survey concerning social security coverage, authorized sick-leave, including for long periods, disablement, and relations with medical experts. We were particularly interested in wrong diagnosis. We were thus able to fully understand the difficulties encountered by the patients and to explain the consequences of their pain and chronic fatigue at work, especially to occupational health doctors. Repetitive tasks, or those requiring high levels of concentration, become difficult for individuals with acute fibromyalgia. Moreover, they tend to feel guilty about the frequency with which they take sick leave -an average of three days per month. As a result, they often go back to work with the profound feeling of being incapable, which is highly upsetting.

81The main aim of the extensive work of the association we just described is to accumulate data in order to raise the interest of health institutions, of the medical professionals and even of researchers concerning what our daily lives really are. We are counting above all on the Ministry of Health to act as a mediator between all these actors and ourselves. Because of the difficulties we have to be heard, we have decided to publish the general report on fibromyalgia, initially drawn up for the Ministry of Health, in a book entitled: Fibromyalgie, les maladies veulent comprendre ("Fibromyalgia, the patients want to understand"). The report includes accounts by patients who show how diverse the forms of this disease are. This document has now been circulating for four years in hospitals where it seems that it is read mainly by nurses and physiotherapists. We have the feeling that we are making progress little by little. At last, requests have come in from outside: from a physiotherapist first, then from a consumer union, concerning intolerances to chemicals, and also from a sleep specialist, from a psychology research team working on the psychological impact of pain, and very recently from a pluri-disciplinary team providing care in hospitals to relieve the patients' pain, which will soon be undertaking various studies on fibromyalgia.

82This work relating to information concerning the disease and how it is experienced has enabled us to answer the Orphanet researchers' who were requesting our help by writing a "disease sheet" on fibromyalgia, now available on Internet.

83Thus, as you can see, fibromyalgia starts gradually to be recognized. But we've been engaged in this background work for years, striving to obtain acknowledgement of the reality of our condition, to raise consciousness and to obtain reactions from the Ministries of Health and Research. In this respect, after six years of contacts, it is clear that we don't see things in the same way. In our perspective, quality of life and having a better future are prominent issues, whereas the way of thinking of the Ministries is mainly in financial terms. We will therefore have to "make the invisible visible" and convince them that prevention and early care of fibromyalgia patients will reduce the costs related to this disease -an argument that the Minister of Health would surely be able to hear.

84So, on the whole, we have the feeling that all this work has generated two results:

  • it has enabled us to build up a more uniform representation of the disease and thereby to be able to talk "in a single voice", to be more credible as the spokesperson of all fibromyalgia patients;
  • it is beginning to spark off some initiatives led by health professionals.

85But we are still far from our goal, which is that all our results and working hypotheses serve to produce well-constructed files enabling us, first, to propose research topics or solutions, with the support and commitment of researchers and, second, to obtain the funding of our studies undertaken in partnership with the medical world.

86Why are we not as credible as we would like to be? How can we ensure that the experience of patients and the leaders of associations -who are truly "experts on the disease" - are taken seriously? How can patients actively become "actors of their disease" and thus research partners? These are some of the questions that need to be answered.

How to build partnerships with the world of research?

87Nicole Champavier, Association de l'Osteogenese Imparfaite

88I have been asked to talk about our association's experience in supporting medical and scientific research. This is one part of the many actions undertaken by the association to help people with osteogenesis imperfecta and their families.

89The AOI (Association de l'Osteogenese Imparfaite - the Association for Osteogenesis Imperfecta)2 was created in 1985 by the combined will of doctors and patients to help patients and their families, to improve social benefits and medical care for them, and to support medical and scientific research. We now have about 700 members and operate nationwide. The AOI is organized around a governing board and a scientific committee. I would like to take this opportunity to heartily thank the doctors on our scientific committee for their competence, attentiveness and devotion to the cause of osteogenesis imperfecta (OI). We have been able to develop fruitful cooperation with them.

90OI is a rare genetic disease characterized by a greater or lesser degree of bone fragility which causes dozens or even hundreds of fractures. That is why it is commonly known as 'Brittle Bone Disease'. Other associated symptoms may be small size, ligament hyperlaxity, dentinogenesis imperfecta, deafness, chronic pain, fragile capillaries, fatigability, etc. Its frequency may be higher than 1/10,000 and its transmission is mainly dominant. OI is due primarily to a lack or poor quality of collagen. The mutation can currently be determined in 80-90% of cases.

Areas of action led by the AIO

91In the 1960s-70s this disease was virtually unknown, including sometimes within the medical community. Even today, it remains too largely unknown and unfortunately the symptoms can sometimes be taken for maltreatment. One of our association's main objectives is to disseminate knowledge on the disease among all the professionals who might encounter it. We try to fight diagnostic wandering and to favour a better identification of the disease. One example of what we do is the training session led by our scientific committee that we are organizing every year for the medical profession. This is particularly important, for even though this disease is unfortunately still incurable (one has it for life), we know that early and ongoing therapeutic care does substantially improve patients' quality of life.

92Apart from this work of information and training, the AIO has been instrumental in furthering knowledge on the disease and in developing and testing new treatments.

93A first example of our action: we have grouped patients from all over France and have created contacts between the few doctors specialized in OI. This has enabled us to record and assess needs, and to define the pluri-disciplinary approach required. For example, we have very recently supported a study on dentine, since OI patients' teeth are often affected. A professor has undertaken an in-depth study on this subject and we serve as an intermediary between patients' families and this researcher.

94The functional prognosis of children with OI has improved considerably with the advent of telescopic pin. With these surgical means, patients acquire greater autonomy and, in the most severe cases, most of the children who would have been bed-ridden a few years ago can now walk. This technique has been progressively adopted thanks to the determination of the paediatric-orthopaedic surgeons on our scientific committee.

95A second example of our action: we have facilitated the transfer of certain treatments used in other countries in France.

96One of the most significant medical advances has been the introduction of bisphosphonate therapy for children. This therapy has allowed for a distinct improvement in their quality of life. It has been used since 1992 at the Schriners Hospital in Montreal. We fought for it to be tested in France, and Pr Glorieux developed a protocol for the children. In 1999, through the impetus of the AOI, our scientific committee obtained authorization for the application of this treatment in France, in the framework of that protocol.

97A third example of our work: we have interested researchers in a group of patients for whom little was previously done - adults.

98In 1999, with the help of its national patient network, the AOI created the conditions for the implementation of the first world-wide controlled prospective survey on adults: the ALOIA study. The aim was to show the effect of a bisphosphonate (Fosamax). The study confirmed that Fosamax increases bone density. However, it did not allow for any conclusion to be reached on the number of fractures. It has not been possible to set in a study including a larger number of patients because of a lack of human and financial resources.

99More generally, we are trying to widen the research realm since we know that many pathologies are associated with OI, such as deafness; we raise questions on aspects relating to the heart, the lungs, etc. and we try to generate interest of other actors. There is still a lot to be done. For instance, we would like better care for the chronic pain that our patients suffer from. We would like facilitated access to genetic diagnosis for those who want it. The fantastic developments in technology should allow for this. The AOI will carry on promoting research for the 10 to 20% of OI whose mutation is not localized, without forgetting the development of new medical and surgical treatments.

Difficulties in supporting research on a rare disease

100Thus, as you can see, there is a lot to do. However, we are also confronted with a number of difficulties, on which I will conclude this talk.

101Some difficulties are 'classical' and I have mentioned them in passing.

102The lack of resources: the financing of medical and scientific research for rare diseases is still highly dependent on citizens' generosity, and the driving role of the associations is often predominant in fund raising. Progress still has to be made to achieve more equity in this respect. In the case of many pathologies it is still difficult to raise enough funds to encourage research, despite the existing dynamic of the associative movement. This highlights the usefulness of the French and European rare disease federations (Fédération des Maladies Orphelines, Alliances maladies rares, and particularly EURORDIS).

103Because OI is a rare disease, we are also confronted with the small size of available cohorts for research on treatments - hence the importance of finding synergies at the international level.

104The problem is particularly acute since protocols are not properly respected. This is one of our biggest difficulties. As I have mentioned, research is being conducted on the use of bisphosphonates for OI treatment, and particularly on the long-term effects on the growing bone. To enable answering questions on this subject, the children treated have to be monitored systematically over a period of several years. Bisphosphonates are not harmless drugs, and to verify their effects properly (is the risk/benefit ratio acceptable?) the defined protocol has to be followed scrupulously.

105The AOI advocates evidence-based medicine, that is, based on validated and proven scientific facts. For a critical evaluation of a therapeutic trial result it is essential to respect a protocol. Answers will not be given to our questions unless the effects of these treatments are colligated within a research protocol (same doses and modalities of administration of the same medicine), and cohorts of patients are rigorously monitored and informed of the utility or not of the treatment.

106On this subject we have a fundamental -and unfortunately recurring-complaint that concerns "deviations from protocols". New treatments are indeed prescribed by certain doctors outside any existing protocol. The Osteogenesis Imperfecta Federation Europe (OIFE)3, to which we are affiliated, has informed us that other European associations have the same concern.

107Patients must understand that they are responsible not only for their own health but also for that of the OI community. While it is up to them to demand treatment within the framework of the protocol, the Association acts as an interface between patients and doctors.

108We bring together patients and doctors when finding a cohort of voluntary patients for research trials is needed. This implies that, in a sense, ethical and moral responsibility is engaged since in therapeutic trials, by definition, the side-effects are not yet known. Via our newsletter and our website we regularly explain to our members the importance of respecting a protocol. We are vigilant to inform our scientific committee of all the cases observed or reported by our members where the protocol has not been respected.

109I wish to point out that we are extremely careful with our membership file, consisting of patients' names. This is a sensitive list. The utmost caution is required and when we are asked to participate in questionnaire surveys, for instance, we transmit them ourselves, after making sure that anonymity will be respected.

110To conclude, I would say that there is consensus on the AOI's role as an intermediary between scientists, doctors and patients. This role nevertheless implies certain "duties" and sustained vigilance regarding our own practices, which we need to maintain in order to continue this fruitful collaboration

How to aggregate and objectify the experience of the patients: some experimental devices

111Bram van der Ende, Dutch Coalition on Disability and Development

112Thank you very much for inviting me as a speaker to this conference. In the program, I'm announced as being active within the Dutch Coalition on Disability and Development. That's only one of the activities in which I am involved. I'm actually spending most of my time in boards of patient movements in the Netherlands, and in coalitions about which I will report further on. The last project I did as a patient-expert was a feasibility study for a fire extinguisher which can be used by people with only one hand and arm, and which is also comfortable for everyone.

113In accordance with the organizers of the conference, I decided to speak about failures of patients' initiatives. Fortunately, I was involved in two failures, and I was at the initiative of one of them. But I am not unhappy.

The Foundation «Patient Practice»

114The first failure was the foundation «Patient Practice». It was an initiative of eminent patients' representatives started in 2001, financed by a big Dutch foundation, PGO, established by the Ministry of Health Care to subsidize patients'-, disability- and elderly organizations, with a yearly budget of 40 million euros. The aim of this initiative was to help patient organizations to formulate their own research questions. Most of the patient organizations are not able to translate or to put their daily problems in terms of research questions. Therefore, they need a certain ability or training or education or qualification, which is not the case in most patient organizations. Consequently, patients or patient organizations are dependent on researchers, and cannot influence research policy. This initiative was something really new and innovative in our country: the foundation was functioning as an agent between patients (demand) and researchers (supply), so that they could simply find each other, and begin to interact and learn from each other.

115The foundation was also involved in theory building and training. Stuart Blume, who is attending this conference, did a study for the foundation «Patient Practice» called: «Patient perspective in research: possible strategies». This initiative was stopped by the PGO foundation because of conflicts about execution of the assignment.

Digital Experience Dossier

116The second failure - and I think it is a bigger failure - concerns the DED. The DED, Digital Experience Dossier, has been prepared by the Foundation Patient-In-Sight in 1998, from which I was, and still am the president. Basically, it is a digital system for collecting daily experience data. Patients and patient organizations are sitting on a mine, a gold mine. And this gold mine consists of their daily experiences, not only in the field of care but also in the field of living everyday life, mobility, education, work, income and so on. This initiative was started with the purpose of building a system that could collect all these daily experiences. It consisted of:

  • A computer at home and also at the member organisations of the CGR, which is the Dutch National Council of Chronically Ill and the Disabled, an umbrella organisation of 120 patients and disabled people organizations (gathering more than 350.000 members).
  • An internet connection.
  • And a big central database at TNO, which is the biggest Dutch research institute.

117Data could be collected at different levels: of course each patient had his own database on his home computer, and each patient organization had its own database collecting data on their level. There was also a database at the level of the CGR (Dutch National Council of Chronically Ill and the Disabled) itself. The pilot started in 2004 with a subsidy of PGO (300.000 euros)

118The aims were:

  • Collecting the patients' 'gold' (their daily experiences).
  • Empowering patients, individually and collectively.
  • Influencing policy more effectively: the data collection enables having stronger arguments to sustain claims.
  • Contributing to demand for oriented care and service provision.
  • Breakthrough in relationship between patients and researchers by ownership of collected data in the hands of patient organisations.

119When patient organizations have the ownership of the data, they are an attractive party not only for researchers, but also for policy makers, for politicians, research institutes, pharmaceutical companies and reintegration companies. Patient organizations can avail themselves of the resource they can offer to these actors, which is their capacity to collect experiences, data and evidences in specific fields quite rapidly. So they gain power, they have data, and they also can make money with it. This was for me the biggest turn around in the patient movements since I started my career in the patient movements in 1995.

120This project was also connected to the improvement of accessibility and quality of medical information on the internet. There is a terrible amount of information on the internet, and most of this information is not of a high quality level. TNO built a system, which certified the level of quality of information on the internet. This still exists and is called Quality for medical information communication and transactions on Internet (QMIC).

121In 2005, PGO stopped financing the pilot. In the meanwhile 12 patient organizations - member organizations of the Dutch council - were involved, and 278 people were participating in a dossier. The Dutch council was not allowed to continue the DED: they were at that moment confronted to important financial problems because of 25% budget cuts. It was a negative spiral. We were not allowed to continue DED.

122Retrospectively, we wonder about the PGO agenda in these circumstances. When they cut our budget, they were already busy making a start for the Foundation Client Experiences in Health Care, which is not under the control of a patient movement. This appears as a competing but less threatening initiative for health care and other service providers and for other stakeholders (as there are: established research institutes, policymakers, insurance companies, ministries, etc.)

123In 2007, we left the whole system to TNO, with all the difficulties -still an experimental system - they tried to get the money but did not succeed. So three weeks ago, they decided to stop this project. To my view, it was the most promising initiative: it could have been a tool used worldwide by the patient movement.

Client Consult

124Client Consult is the third failure in which I was involved. After the cuts on the budget of the CGR, the CGR decided to cooperate with the IRV, Institute of Rehabilitation Questions. We started in 2006, financed by a special foundation: this initiative consisted of a group of academic educated patients experts. The aim was commenting research programs in the field of health care from the point of view of patients. More than 1000 brochures were sent to research institutes, universities, policy makers, etc. We did not get any assignment. We were prepared, we were trained, but we did not get any question or any assignment. In September 2007, Client Consult shall have to stop its activities (lack of money, lack of interest of researchers). Another failure.

Nevertheless, we had one success: the Platform PI

125PI is an Initiative of the Dutch Council and Nefarma. It is a coalition of patient organizations and pharmaceutical companies. Nefarma is an umbrella organization gathering innovative pharmaceutical companies in the Netherlands. We started in 2003 on an equal basis of patient organizations and industry, financed by patient organizations and the industry (the yearly budget was more than 100.000 euros). Our aim: influencing long-term developments of pharmaceutical care from the patients' perspective. Three working groups were set up: one about compliance, adherence or concordance; another on quality and treatment standards; and the last one on accessibility of medication.

126We have a balanced working method: we start with a problem definition by patients, members of the working group; a research program can be proposed by patients or patient organizations in order to validate the problem definition and to get a basis for its formulation. Then research is being done, report follows and after a (medical) expert meeting, a conference brings the relevant stakeholders together to take their responsibilities on their own or together. Most of the time, they do it together, because a stakeholder alone isn't able to define relevant solution in our field.

127On the issue of compliance, we had a subsidy of the Dutch ministry for a national inventory of compliance projects, which we completed in June 2007. It was the first time that all the stakeholders came up with the plan to learn about all the activities in the field of compliance or adherence, which is a big problem: about 50% of the patients are not compliant, a phenomenon which has important effects on societal and macro-economic levels. The process resulted into different actions. First, the Ministry of Health Care decided to start a TV advertisement in our country about compliance; it started two weeks ago. Second, we developed a concordance checklist. The word 'concordance' indicates the degree of equality and the nature of the relationships between doctors and patients. Concordance is a very important factor as regards patient's compliance. If a patient decides by him/herself to take a medication, then the chance he/she has to actually take the medication is much bigger. When the patient-doctor relation is asymmetrical - the doctor decides on his own why a medication is important, and the patient does not know why, how and when - it does not work.

128In the meanwhile, we started a steering group under the presidency of ZonMw to develop GRIPP in 2007, a standard for medical treatment development with the guaranteed participation of patients. As we know, all doctors work on the basis of standards, treatment standards. These standards reflect the state of the art, the knowledge that exists about diagnosis and treatment of diseases in the medical field, and therefore they have to be renewed immediately or shortly after new insights in diagnosis and treatment. Normally, patients are not involved in the making of these standards. It is the work of doctors and researchers, of health professionals. Under certain circumstances patients are involved, but it concerns 5 % of the medical standards. Considering the situation, the Platform PI decided to establish a procedure requiring that all the standard developers have to involve patients in this process. Patients have to be trained and they have to be involved. And ZonMW, I hope, will control the standard developers. They shouldn't get money in the future if they don't include patients. And this is a big revolution. It is a very important step towards patients' empowerment.


129The (financial) position of patient organizations has to be thoroughly changed: empowerment should be considered as a leading principle. For the moment, patient organizations are very poorly financed. They are weak; they cannot be other than weak. They should get structural funding allowing them to hire good educated and qualified professionals, including researchers, to help them to develop research questions and to execute research programs.

130The ‘gold’ (experience-based patient knowledge) has to be digged up by the patient organizations themselves, not by others! My point of view is that patient organizations only should have the ownership of the data.

131The relationship between researchers and patient organizations needs to be changed and based on complementarity: new approaches, procedures designed and implemented with the help of ZonMW are necessary to change the existing situation. My point is not to blame individual researchers, but to consider the conditions under which they are working. You cannot change them on an individual level. It is not a question of attitude. It concerns the whole system, the whole arrangement. So we have to change the system. And ZonMW, I hope, will succeed in that and in making new required procedures, obligations and conditions under which researchers - working not only in the field of care but also in other fields - will have to work. And then the negative power of established conservative institutes has to be positively directed.

132Probably with arguments of efficiency and effectiveness. That seems to work also.


Summary of the discussion, group 1

133by Madeleine Akrich

134The debate started by a preliminary effort to figure out what it does imply to use the term «patients' organizations» when discussing their role in the production and the dissemination of information. Participants put an emphasis on the fact that patients' organizations cannot cover up all issues related to health. POs' very existence depends upon the medical recognition of their disease, condition, or symptoms. Provided this situation, two main issues were raised. First, to what conditions are PO's able to gather information, and play a leading role in the recognition of their condition? Second, for some participants, the relationship between POs and various actors who intervene into their domain should be taken in account. This second issue had being quite extensively discussed throughout the workshop.

A potential blurring of boundaries between information and promotion

135Some participants consider that, at least in some countries, many POs are too close to the pharmaceutical industry. Consequently, their capacity to provide independent information to patients is questioned. In such conditions, it is difficult to make a difference between information and advertisement. This point is seen as crucial, provided that the pharmaceutical industry also tries to influence patients through «information leaflets», which are actually drug promotion:

«What we have seen in recent years is a real blurring of the boundaries between what constitutes health information and what constitutes drug promotion or advertising activities. And many patients' organizations collaborate (...) Many of these information campaigns are effectively advertising campaigns, they are drug promotion activities. And I think that an issue that confronts patient's organizations is how you disentangle health information from advertising.»

136But for other participants, the fact that POs develop relationship with the pharmaceutical industry, and even get funded in specific circumstances such as research projects or clinical trials, is not an obstacle per se as far as POs are perfectly transparent about the origins of their funding.

137A substantial part of the discussion was devoted to the nature and the quality of information that POs should provide to patients, and to the conditions that help to fit into “quality criteria”.

Information for everyday life: an important task for patients organizations

138POs play an important role in enabling individuals to access to relevant pieces of information. One participant mentioned a study conducted in the Netherlands, which shows that patients consider information provided by POs as the most relevant one, compared to the information provided by physicians, pharmacists, hospitals, and other actors. However, another participant stressed on the differences between POs as regards the role that professionals actually play within the organisation. In some POs, professionals - and especially researchers - have been playing a leading role for many years. As a consequence, POs tend to deliver certain types of information, or restrict themselves to certain aspects. Researchers' main interest is in the disease. When they hold a prominent position within POs, these organizations tend to concentrate on the disease as their main entry point into the shaping of information. Whereas when patients play a major role, the information might be organized very differently, by taking people's daily life with the disease as a central issue for instance.

139Several participants considered that focusing on the patient's life is crucial:

«I think information is also required for everyday living, and that's highly important part of patients' organizations work. That's the key for people with chronic illnesses, it is not only about specific treatments, but it's about the holistic approach of their whole life.»

140For another participant, this implies quite an important work to sort out information according to the stages of the disease for instance:

«For patients, it's important to get the information on the level he or she needs at one specific moment. In the beginning of a disease, you have totally other needs than when you have been a patient - like me - for fifteen years. In my organization, we decided to make the information for the patient compatible with the stage of disease».

Helping the patient to be a good partner for medical specialists

141Apart from providing information on the daily life with the disease, POs also play an important role in elaborating and offering tools intended to help patients to collect information on their condition, and to mobilize it to improve their communication with the physicians. One participant reported on a Dutch experiment: a database was implemented, whose aim was to collect individual patients' daily experience. The data can be used at an individual level:

«Each patient could make a diary for him or herself about the development of his or her disease. Not to keep it for him or herself, but to be organized and to be a good partner for a doctor, a medical specialist. (...) because you only have, in normal situations, 10 minutes to speak with your doctor».

«We want to have the right to know everything others know»

142To be able to deliver information with a certain degree of reliability and quality, POs themselves need to get information. According to some participants, it is a struggle to get access to all kinds of information, and especially to information retained by the pharmaceutical industry:

«Industry has more information about drugs, diagnosis, and treatment than anyone. So, as a patient movement in our country, we want to have that information. We want to have the right to know everything they know. And therefore, we want to have regulations, systems, certification, and rules. So that all the information available comes available for patients. We don't want to be dependant on doctors.».

143Various actors use information as a strategic weapon. For instance, insurance companies rely upon certain information to impose cheaper treatments; the same goes for pharmaceuticals when they are targeting new markets. One participant argued that in any case, POs must be an obligatory passage point between those actors and individual patients.

144Information on research is also a crucial issue. What is at stake here is not the availability of information, but rather the ability to select and analyze it. One participant mentioned a French experience conducted by the INSERM, which aims at endowing POs with scientific expertise capacity:

«We organized training sessions at the INSERM, open to all patient associations. And to answer the needs they expressed, we organized four workshops. One was entitled 'How to Look for Biomedical and Health Information on the Web', the second one: 'How to Organize One's Own Scientific Survey' by using this huge database on biomedical knowledge which is 'Pubmed'; and the third one was about 'How to Get Information in French' because a lot of people in France don't speak English, etc. We launched this program in 2006, and we had more than 15 sessions with 200 people. POs want to build their own capacity to get information where it is, to learn how to use it, to learn how to decode it.».

145Participants also expressed POs' needs to get extended and more «transversal» type of information: POs are generally able to acquire a good level of expertise as regards the pathology they are concerned with. But they also want to extend their expertise to more general topics that might be relevant for the understanding of the disease:

«Patients with Crohn's disease, with inflammatory rheumatism, with long-lasting rare diseases, all asked us, at the INSERM, to organize training sessions on auto-immune mechanisms.»

Should information on, and from patients and POs be turned into commodities?

146In the second part of the workshop, the discussion mainly focused on the role of patient organizations as information or knowledge producers.

147Several participants stated that patient organizations play an important role in the collection of useful information for the researchers or the industry. They gather information on a specific disease or diagnosis, on side-effects of drugs, on the way drugs have to be taken, etc. They can act as intermediary between patients and researchers/pharmaceutical industry for the recruitment of patients for clinical trials. In other words, they already stand in a position in which they can be considered as partners in the production of knowledge.

148Participants then addressed the issue of whether or not POs should ask for financial counterpart to this information they contribute, provided that it constitutes a sort of "specific asset" whose value added is recognized by their interlocutors. This question raised a heated debate. For some participants, entering into such a process would bring considerable difficulties and backlashes:

«I'd just like to make a comment about the use of 'gold', to describe the patient information. I think it's a highly appropriate term in the light of the fact that in the past, patients' experiences have been dismissed like doubtable, and have been trivialized when compared with evidence-based medicine, etc. But it can also be problematic. Because, if, when we use the term 'gold', we mean the patients' experiences and the information that is produced by patients' organizations, it's something that can be bought and sold on the market. But then, what we are talking about is the 'commodification' of patients' experiences. And if we are saying that perhaps this is some way that patient organizations can get some resources which they're always struggling for, then there can be problems with us. Because if it is something to be bought and sold to certain actors, it becomes, maybe, their property. And then, we'd possibly get into issues of intellectual property rights. And if it is something to be bought and sold, there will be people who can't afford to buy it. I think it could result in triggering processes patient organizations don't want to contribute to...».

149By contrast, one participant argued that all actors should be put on an equal footing:

«The researcher (who is seeking for patients to participate in clinical trials) places an advertisement in the paper or somewhere and it says: 'You can have 3000 euros if you stay two weeks in a hospital, under control and take this medication.' The other way is: a medical researcher goes to a general practitioner, asks him or her: 'Can you give me the name of patients with this and that disease and this and that medication? I want to try out a new drug.' The doctor gets paid for his information. Normal practice. The patient does it voluntarily. Often, he even doesn't know that he is involved in an experiment. But this patient is the source of new knowledge. (...) Why shouldn't patient organizations get money to select, with usual criteria, patients who wish to contribute to improve usual medications? We are adults, we are equal partners. Why can't we be enforced to get better medication, as a patient organization? So, in this way, a patient organization can be a big partner in the dynamics of medical science. When a patient organization gets money, it can also reinvest in its own research questions because it can hire researchers and be its own boss.»

150From this participant's point of view, entering into a "commodification" process does not mean being enrolled by pharmaceutical firms. Quite the contrary, this provides the PO the necessary means to set up its own agenda, and therefore, to pave the way to its own emancipation.

Patients' organizations as research promoters?

151The potssibility for the POs to define and conduct their own research projects is very attractive to a number of participants. A few studies already completed or in progress were mentioned. One participant from a mental health organization reported on its involvement into «action research»:

«It is really interesting to try, not only with medical professionals but with many other people from civil society such as sociologists, psychologists, or legal scholars. We have many discussions. We work a lot on the knowledge that users acquire through experimentation, on new practices to produce new knowledge. But it is a real difficulty to launch something that is not recognized, not supported.»

152It was clear to participants that these studies should be circulated especially to physicians:

«I have been thinking for some time about how we can share the benefits of experience-based research which patient organizations undertake themselves, which is not eligible for publication in scientific journals. But it's a very difficult area and there is a lot of really good information out there that we could be sharing with one another. It needs a second tier journal of some type and I think it's something that could be produced at the European level, or maybe, also, of course, in other languages. (...) And I'd be really excited to see it because I've seen many studies over the years. I've been involved for 30 years and more in patient advocacy and I'm a banker by trade or profession. So, I'm not a medic, I'm not for the pharma industry or anything. But I really think that that would be exciting.»

153Some tools available on the internet, which allow to synthesize patients' experiences, have been quoted (Dipex, Duets). In any case however, patients' organizations are willing to do slightly more than documenting these databases (introducing new themes such as issues related to quality of life for instance). As one participant puts it, the question is: «How to connect on those experiences?». Another participant concluded the workshop by asking:

«Could we prepare a new European project on how patient organizations can grow in a role of knowledge producers, and how they can organize it?»

Summary of the discussion, group 2

154by Florence Paterson

155The discussion addressed different aspects of the relationship between expert knowledge and lay knowledge. The questions raised mainly relates to the production of knowledge issued from the relationship between the POs and the scientific and medical sphere. What has been central in the discussion is the role of PO as mediators capable of bringing to the fore questions, collectively formulated by patients that could find a translation in research or medical care. The participants pointed out the difficulties, but also the achievements, in the encounter of both types of knowledge. Collecting and disseminating lay information and knowledge entails a certain ambivalence, it may at the same time help the patients and their relatives and be at risk, which must be considered by the POs. The POs' production of knowledge goes along with changes in the divide between expert and patient knowledge, and begins to be a source of knowledge used for professional training and information.

Patient organizations as producers of information and knowledge

156One way of approaching the issue of 'patient organizations as producers of information and knowledge' is to concentrate on the vocabulary used during the discussions. What strikingly takes shape trough the words used is the dynamic generated by the POs which results in a collective conception, understanding and way of considering disease and questions related to research and care.

157The term ‘lay’ knowledge was never used. Participants talked about ‘daily concerns’, ‘daily worries’, of the ‘global view of our problems’; other mentioned the ‘experience of patients’, things that are ‘in the aspect of the patient’ (as opposed to ‘in the aspect of the doctor’). And this takes the form of 'testimonies of patients’, narratives on ‘how to live with a condition in everyday life’, but it was also question of ‘descriptions’ provided by patients or 'discoveries' of side-effects or of symptoms. It is the object of ‘discussions’, ‘practical discussions’. What also appears as a ‘source of information’ and knowledge is that PO are themselves -and provide- communication tools that enables contacts or voices to be listened to: participants mentioned information 'coming from just listening to a mother' or ‘knowledge that comes from contact with other people’ through meetings, discussion lists, phone calls, etc. The dynamic aspect of the action of PO comes through what is done: information is ‘collected’, ‘gathered’, ‘exchanged’ between patients but also ‘transmitted’ to researchers and doctors.

158The following sections concern a broader aspect of this dynamic, that is how information and knowledge collectively produced from the experience of the patients and relatives participate in the relations of the POs with the medical and scientific arenas.

Connecting the production of lay knowledge to the production of scientific & medical evidence-based knowledge

159The connexions between the evidence-based science/medicine model of knowledge and lay or patient knowledge, but also the role PO play in fostering this connexion, has been one of the main issues raised during the discussion.

160First examples were provided that shed light on the difficulties POs have to prompt the interest of medical professionals on questions they do not raise themselves. The questions are simply not part of the research topics or taken into account in care.

“They [the doctors] are interested by what we say but they are not sure about what we are asking them. When we say: 'yes, but these effects, for instance growth hormones, help bone growth but they also enlarge bones.' So the side effect is in the aspect of the patient. And they are surprised. So, that means they are only focused on their own thing - that the woman grows - and that's all right. The rest is not so important.”

161Talking about a treatment given to children with osteogenis imperfecta, another participant to the discussion stresses a similar claim:

“ [Our] organization is finding information about existing protocols but the difficulty we have to face is that doctors do not want to use the protocols because the benefit [of the treatment] is obvious and appears immediately: there is less pain. The doctors think this is enough and they don't understand how important it is to use the protocol also, because they are just interested in relieving pain right at the moment and they don't see how important for the patient it is to have a long-term follow-up on the possible side effects over 20, 25 years.”

162In another case, the research framework itself, in particular the question of the scale and institutional framework of the inquiries, is questioned by the PO:

“We draw up the question often that we have you go on to a European level to have enough people to be involved in research in order to have meaningful results. Research, until now, is on topics and in one's own country, in one's own research institute. Because we live with diseases twenty four hours a day, we are the only ones who really have a global view and who understand meaningful it is to bring all the patients in Europe, for example, for a rare disease, into a research protocol.”

163A second type of example shows the active part PO may take in seeking for researchers that would actually integrate their 'lay' knowledge into their research questions:

“Briefly, Prader Willi syndrome causes severe obesity. Patients can die of respiratory problems. Everybody used to think it was normal because the patients were obese. (.) I got two phone calls from families of patients who were not obese. (...) These two children, without the diagnosis, would have died, nobody would have cared. But because we asked questions, we went to our medical council, we 'rang the bell', we said: 'it is not normal, what is happening to those children!' We discovered that there are important breathing abnormalities in Prader Willi syndrome which had never been described before in the literature. (...) It is just an illustration but it shows how important it is. (...) We have a scientific council and then we 'ring the bell' and we go and see all the doctors until there is one that takes concern and we were lucky enough to find the right doctors. (...) Not only we found two clinicians, we also found someone working in basic research who started looking at her mouse model in a different way.”

164While reporting the observations and descriptions made by the patients and relatives, the PO act as mediators of knowledge. One of the participants, mentioning his experience as a researcher in the commissions of the HAS, stresses the benefit of the encounter of formal information about evidence-based medicine and of what he calls "informal information":

“Evidence, in medicine, is the first stage of the definition of a problem but there are all kinds of other information, especially from patient organizations. This is also important to allow us to reach conclusions and allow us to write recommendations on this kind of topics.”

165For pro-active POs, being present in research from the beginning and thus bringing the knowledge related to the experience of coping with the disease on a daily basis into research programmes is underlined as a condition for making research actually useful for the patients. This kind of patient involvement in research was advocated about policy recommendations for the creation of mechanisms for long-term and postmarketing pharmaco-surveillance at the European level, but also about the creation of registers that enables the collection of data about a disease, as well as about research protocols. As stated by a participant about clinical trials protocols:

«I thought that my duty was to bring those daily concerns to researchers so they could take them into consideration. Basic research doesn't know anything about the natural history of a disease. What is the interest of studying mice if you don't know what goes on in children? (...) It is very important for patient organizations to be integrated into research groups from the very beginning of research protocols because we're not only there to recruit patients when the protocols are finished.»

166The two types of examples mentioned contrast in the way researchers and medical professionals manifest disinterest or interest for 'lay' knowledge brought in by patients and the way they work or not in partnership. This led to the question of how did pro-active POs succeeded in setting up scientific committees with effective partnership that enables full patient involvement in research. The French association against muscular dystrophy (AFM4) provides an example where the partnership with researchers doesn't overlap with the management of the organization's research policy:

“We have a long history of work in a scientific committee. I think this is related to other questions, the world has changed and now we no longer have scientists or doctors who know and patients who don't know anything. And it's not only in the medical field, at school it is the same between teachers and parents. Then, what is important is to work and to build a kind of partnership. (... ) It's of experience. (... ) For us, for example, the scientific committee only gives advice. All the decisions are taken only by patients. Even for us, and we have huge amounts of money we can invest in research, the scientific committee never decides, only the patients do. And then, we have a link of partnership, I mean that we discuss. And in some cases, we decide certain things but against the advice of the scientific committee. We decided to invest, for instance into some scientific research, against their advice and the history shows that it was the right thing to do that. And for very, very important things. That is why I said: if we consider that the scientific committee is a god, a scientific god and that what they say is true, there is a risk.”

  • 5 Conticanet is a European network of excellence dedicated to connective tissue tumors, which is see (...)

167But patient involvement in research is not only a question of management power and governance. In a newly created network, Conticanet5, even if researchers are convinced that a common network represents a strength - in particular as regards the relationship to public authorities- the involvement of patients at the first stages of the building of a research programme doesn't go without saying, and demands to be reflected on:

“We deal with cancer and cancer is quite well represented in science and in research. (...) We are in our network to involve patients (...) and we are actually building a European niche to gather all the different diseases including connective tissue cancers to speak with one voice, to make a lobby like rare diseases and we'll try together to have lobbies to help interaction with authorities. (...) That is a question we'll have to face also in the network and I heard this morning that it is really very important questions about how patient groups could interact with research, begin with all research, during research and clinical trials. Clinical trials need patients, there will be an interaction, there has to be an interaction. In fundamental research, it's not that easy to meet patients in general. We've had this question from patients in a group and it's not an easy question to answer.”

168But for the representative of the AFM, the encounter between fundamental and clinical research scientists and patients is essential to research, because it traces out the link between research and daily life with the disease:

«What we all have is the same revolt against the disease. And this is the driving force. And I think this driving force gives researchers the spirit of what they're doing. I am very surprised because I see many organizations for many diseases, when researchers meet patient organizations for the first time, very often after they say: 'now, I know why I work.', 'I can say what I do every day', 'the face of the patient I saw and what they do.' This is very important. It is maybe the main role of patient organizations, to have this link with researchers. And what's interesting with researchers is to always be there to show them why they work and to show they deal with people's lives that their quality of life is behind their work.».

Producing lay knowledge and providing information to the patients

169The sharing of experience between patients is a different question. One of the main tasks implemented by the patient and health service user organizations is the dissemination of information, be it medical, scientific or based on patient and users experience. Some POs or PO alliances have a charter that concerns information. The role of POs in the dissemination of 'lay' knowledge has been considered during the discussions from two contrasting perspectives.

170In the positive perspective, the collection and sharing of experience was considered as influencing the way individuals may perceive and speak about their disease. There is an effect of the collective disposition of POs: individual testimonies, stories or observations are no longer only individual experiences. POs act as mediators and translators of knowledge and information, especially within patient-doctor or lay and expert relationships. In this sense, POs appear as facilitators within that relationship through the creation of common understandings of, and a common ground for, dealing with certain conditions:

«So, you, as an individual... you hear other people talking about the same theme with other words. So when you go to your doctor, maybe you can explain in a better way what is happening to you and you ask questions that are the right questions because you know the answers you want. then going to the doctor's and saying: 'I know the thing'. I think that is really necessary for patients, for them to be able to be active. It is easier to be active if you have the opportunity to meet other people and you know that it makes sense to do this... I would say that when a patient starts to talk that way about his disease. So it's also a way, a complementary way to progress in a relationship.»

171Tools such as online fora and chats allow broader and shared understanding of the disease, the web thus becoming a complementary tool for the productive transformation of the patient-doctor relationship.

172As regards daily life concerns, these tools also favour the circulation and discussion of experiments:

“We believe that if someone tries something that works to have a child sleeping, for example, or for tantrums and so on. So he describes the symptom on the internet, then other families can answer and say: 'well, this works for me too' or 'it doesn't work for me etc. It's a kind of treasure to exchange the ways you can cope day after day with a disease through those discussion lists.”

173The negative perspective of information disseminated by POs concern a series of risks for the patients. Were mentioned during the discussion:

  • the risk of misinformation (wrong or inaccurate information);
  • the risk for the patients to feel stigmatized by the treatment prescribed to them ("it can be quite the case that a family can look on the internet and find evidence -because there's research for everything, really- to use in a negative way that impacts and disrupts, it stigmatizes the treatment.") and thus the risk of increasing self-medication;
  • the risk that pharmaceutical companies may use discussion lists for direct to consumer advertisement;
  • and also the negative impact information searched on the internet may have on patients or relatives who just received a diagnosis:

“Patient groups are very concerned about the kind of information they give. I think no one is more concerned than we are because we know the impact of terrible information after diagnosis, for example. We know how painful it is when you have a newborn child to learn that this is a life-threatening disease, and so on. So we have been working very hard on adapting information to a person's needs.”

174Confronted to the ambivalence of collecting and circulating knowledge issued from experience, the POs weigh its possible lack of robustness -as opposed to evidence based knowledge- and the related risks against its ability to favour the definition of new questions for research or care. PO representatives insisted on the necessity to handle this kind of information and knowledge carefully:

“When we gather such information, we are very careful about that kind of information.”

175and even to proceed to a certain translation before it was given to the public:

“People can focus on it and there can be a certain exaggeration or wrong conclusions. It can be very dangerous to collect this. One must see how to distribute this information. One cannot give it as it is.”

Information for the professionals & the scientists and information for the POs?

176Another question connected to the relationship of lay and expert knowledge is the production of information circulated and provided by POs and the public addressed. More precisely, the conception that distinguishes, on one hand, the professional use of information based on "sound science" and evidence-based models -to the exclusion of lay knowledge and experience-sharing- and, on the other hand, the POs and patients need for specific type of information was criticized:

“If there is information, there is no reason to have information for professionals, for scientists and other information for patient organizations. Because, in our experience, I said it was not true to pretend that there are two different worlds: the world of patient organizations and the world of research. Because, for example, Christel Nourissier said: 'all patient organizations and especially in the field of rare diseases, have a scientific concern.' They all work - I mean patient organizations that are interesting in research- they make the everyday work, for a big part, with researchers. And then, it's this everyday link which is very important to build good quality information.”

177Referring to the opposition between rational knowledge and opinion, one of the participants to the discussion underlines similarities between professional use and patient use of information:

«Most doctors, when they prescribe a treatment in a particular way, don't go back to the literature and look at the evidence. 'Is this therapy an improvement over what we were doing before? Have we got all the data?' No, they don't. They mostly prescribe on the basis of either what they are told by a company representative or what they hear from colleagues which other people told. And it's also more a spread of opinion. The circulation of information in the medical profession is not as different from the circulation of information in the world of a patient, as we are led to believe.»

Disseminating lay knowledge in the medical field

178The dissemination work of the PO also concerns changes regarding the divide between lay and expert knowledge. These changes, which call into question the traditional share out formulated as «scientists or doctors who know and patients who don't know anything», appear in a reversed relationship where it is the POs that provide information and training to health professionals:

«We also made a lot of conferences for undergraduate students in nursing and medical students about rare diseases»; «We distribute to endocrinology services some papers to inform about this disease-syndrome in order to have doctors saying not so crazy things to the patients concerned with the syndrome»; «We have a small revolution: we think, in September, this year (...) in Necker Hospital, which is one of the most prestigious in the university of medicine, for third-year students there will be 30 hours focused on rare diseases, including patient contributions and we have to do a part of the work there and there will be families coming to talk about, for example, diagnosis.»

Summary of the discussion, group 3

179by Madeleine Akrich and Florence Paterson

180Discussions started on the topic of patient organizations' positioning in relation to medical professionals and institutions. This led to another subject, the relative place of certified medical knowledge and other types of knowledge, such as lay knowledge. Two points were discussed at length. The first pertained to Evidence-Based Medicine, the role of POs as regards research within its framework, and the limits and problems encountered by this approach, even though it benefits from a dominant position among other forms of legitimate knowledge. The second point, complementary to the first, was the way in which knowledge production could incorporate other approaches, and the possible contribution of POs to that production. Finally, questions on the role of POs in informing the public, and the importance of training for POs, were considered.

The positioning of patient organizations towards "experts"

181The production of knowledge, and the collection and dissemination of information, are matters of concern for a part of the patients organizations across Europe. Being involved in the development of research for a better understanding of the diseases, improving the quality of life of the patients, their information when facing the choice of a treatment or their participation to clinical trials, are some of the missions the PO intend to implement.

182The main question raised about these kinds of missions was whether patient organizations need the expertise of physicians or researchers to help defining their information and research policies towards the patients or for the development of research programs.

183Two different positions were described, that shed light on the core questions of the power relationship and the distribution of power between the actors concerned by health and research, on one hand, and of their relationship to knowledge, on the other hand.

184PO in the first position express a need for scientific expertise to choose and collaborate to research projects set up by researchers. Many PO have scientific committees, which, at different degrees, participate to the definition the research policy of the PO or the type of information disseminated by the PO. Collaboration to research projects consists, in many cases, in providing patients for studies or clinical trials.

185PO which hold the second position do not consider this kind of collaboration as necessary. Their statement is that PO have their own expertise and knowledge and therefore “do not need medical professionals to advice and assist. Their collaboration with researchers consists in providing this lay expertise to improve research, “to do better research.

From reactive to proactive position

186This difference of conceptions is more or less connected to a certain definition of patient organizations' legitimate forms of activity and involvement. Throughout the discussion, it appears to be two different kinds of involvement. The first is when the PO are put in a reactive position (their role is “just to make remarks” on predefined proposals, “that might not be taken into account). The second one, that might be called "pro-active", is when their presence can affect the process (even if it is not very clear how).

187The use of the category of stakeholder itself can be questioned, in as much as it appears to be instrumental. Putting the PO in a reactive position means using them in a way where their expertise is not fully mobilized and their participation stays quite limited (sitting on a board, providing comments or voting for the agenda they did not participate to elaborate, etc.). The question was raised of what sort of category the patient organizations themselves may put forward to avoid the pitfalls of this conceptual framework.

188When pro-active PO are willing “to set an agenda or to raise some questions, they often "stumble the wall of democracy" as it remains unclear who the interlocutors are, be it at national or European level.

189The dynamics of the relationship has to be taken into account for a better understanding of these “reactive” or “proactive” positions. “What strikes”, says a Portuguese participant, is that "many of those work groups in the Ministry just didn't react". Relations of parity are reached when PO “are able to set an agenda”, to make proposals on issues they want to discuss and when “the other partners follow them”. A Dutch participant to the discussion stresses that trying

“to develop a dialog between researchers based on this agenda is very difficult because you feel researchers are getting very defensive because they are afraid of this agenda". But "it certainly gets researchers curious of what's in this agenda and that's really different things about what they are doing and I think there is a lot of things are complementary but there are also some specific accounts.”

190Pushing for more involvement of the PO on medical research councils is a way to influence research.

“Lay knowledge is becoming an important stake”

191but it seems to be

“demanding on the side of associations to evolve to other forms of organization that will help carry the burden of these -so to say- gold miners', as someone said this morning.”

192For the PO, the promotion of their specific expertise and lay knowledge is a question of proposing new strategies, new forms of collaboration, and new forms of organization: how to organize this increasingly important role as providers of knowledge for health care? How is it possible to constitute this lay knowledge as something valuable that has to be taken into account by others?

193In its existing forms, the participation of PO (in the French commissions, for instance) raises the problem of having availability periods for this activity: the participation is time consuming, and the representatives of PO must engage working while they often have also a professional activity and are facing health problems related to their illness. Spending time raises the question of the financial remuneration for lay expertise (some institutions pay for travel expenses or child care, but do not pay for participation to committees and work groups). The non-payment enhances the differences and inequalities in the participation of PO: while some PO have money and paid staff, small PO only rely on the benevolent activity of a few people, and the function and possible influence of the two kinds of organizations are then very different. Payment is also a question of recognition of the value of expertise (“they don't value what they are not paying for ”says one of the participants to the discussion).

Participation of POs in Europe

194The idea of a “patient involvement” in research and medical care has progressively spread in most European countries, and examples of actual initiatives to improve this involvement in several countries were given. Through the discussion, it appears that each organization has its own way of defining legitimate forms of involvement. But it also appears that the opportunities for the PO to have a say in health policy differ from one the country to another. These differences have to be stressed. In the Netherlands, the Ministry of Health considers that “patient organizations are the third party in health”, the first party being the professionals, and the second the insurance companies. In France, there is a collaboration policy between the Ministry of Health and the PO, mainly developed since the 1990' with aids organizations. Since 2002, collaboration has been regulated by law, both at the state and the regional levels; there is a participation of “users” and PO to the hospital system; there is also exchange platform at the Ministry of Health to work on health and research problems with PO and umbrella organizations such as the CISS; collectives of PO were organized to bring problems at the regional level (by participating to conferences). In Portugal, there is the same kind of working groups at the Ministry of Health. In Germany, since 2002 patients are recognized as actors in the field of heath. Their role is however limited to a role of advisor, as they do not participate in the decision making, for instance about the treatments that should be funded (they do not vote, but only bring comments on the issues debated). Throughout Europe, there have also been

“evolutions on the way that patients have been seen as to their expertise especially in the participation of patients of postmarking surveillance. And certain countries are coming to that with patients' reporting.”

195Even if these initiatives witnesses of a political will to involve PO, their role is not very clear. For the representative of an organization of the UK:

“We are in a position where the power and the control are very firmly between the governments, the doctors, the pharmaceutical industry. They have total control of medical care”.

196This situation questions the influence PO may have on research policies and medical care. The pitfall of involvement, says one of the participants to the discussion, is that it is reduced to a

“sort of classical political representation with no specific voice in terms of elaborating conjointly the sort of decisions and programs that the patients can do with public authorities”.

The contribution of POs to evidence based knowledge and its critics

197Evidence-Based Medicine currently appears clearly as an unavoidable reality. How can patient organizations have a grip on it? Participants to the discussion largely agreed with the idea that POs can play an important role in the design of research projects; the projects design can be improved by integrating assessment criteria which are different from the criteria put forward by researchers and physicians:

"There are quite a few examples within randomized control trials where the cancer patients on that trial group have asked for additional factors to be measured for when looking at a new medicine. Because they say: 'well, ok. You've decided of these particular measures and this would improve these particular symptoms but if these particular symptoms improve, it doesn't mean the quality of life improves. It doesn't mean to say that I won't have side effects.' So, they've asked for additional factors to be put into the designs such as measures for certain types of side effects. So, it's that tacit knowledge that lay knowledge of experience in a condition that can be so vital. It's getting research questions right in the first place, whatever type of research it is."

198POs serve as intermediaries between patients/users and the teams that wish to engage in research. Some consider it important that the information tools concerning research, proposed to patients, be elaborated in collaboration with the organizations, so that the information delivered takes into account all the relevant aspects for the patients. This is the condition on which the notion of "informed consent" is fully meaningful. The POs' position may however be tricky, in so far as there is not necessarily a convergence between the interests of the collective -developing research on the problem concerning them - and those of individuals. A member of an organization commented with regard to cancer:

"The biggest problem is the randomization. Parents have to understand, not for them but for the children, that they have accepted to be involved in such a trial and that there is a randomization. It is so difficult for the families. So, we try to explain to them what it means, but it is very difficult to explain. Parents are sad, and do not cooperate to what they sign. "

199Although Evidence-Based Medicine is recognized, it is also strongly criticized. Increasingly reduced to randomized trials, for some it conveys an implicit ideology of medical progress linked to the development and increasing use of drugs and technologies:

"There is a big need for information about that because, as you mentioned, very often, patients perceive newer medicines as being the best whereas, for instance, older medicines, we know more about, they have safety profiles, they have been more researched and they might be safer options in the long run."

200It also limits the spectrum of problems to address and the way of addressing them. Finally, some see a purely scientific critique of meta-analysis, considered as a sort of goal of EBM, as essential:

"Extending randomized trials: the chance, now, is to do meta-analysis. Which means that you take all the randomized trials and you put them together and then, you come to a conclusion from that? But when the lay people analyzed the trials that went into the meta-analysis, they said: 'look, half of them can't be compared!" Because all of them are never looking as it is. In fact, they were all doing slightly different things and you can't come to this conclusion with it. Or they come to a conclusion which was actually based on a trial that had a very, very small difference which they, then said: 'this is a difference.' So, I think this is another problem with randomized trials."

Lay knowledge and the contribution of POs to the production of knowledge

201Participants to the discussion agree on the idea that lay knowledge is based on the experience of the patients. Is the experience of being a patient or a user of the health system sufficient to be considered and recognized as lay knowledge? Two different conceptions confronted during the discussions: in the first one, biomedical knowledge is considered as a prerequisite to the elaboration of a specific patient standpoint, whereas in the second lay knowledge is seen as a possible competitor of certified knowledge.

202For the representative of an organization of people with diabetes

“In many cases, lay knowledge has to be constructed, because it simply is non-existent or insufficient in many cases. And especially in cases where there are new therapeutics, new drugs, new techniques that every time the come available, they have to be 'taught' to the patients in order to for them to be fully informed.”

203Empowerment of patients, which means having the capacity to have a dialog with medical experts, implies that “this lay knowledge has to be on the same level as the expert's knowledge.” And “in many cases it is an unbalanced thing.” Taking a “contrary view, the representative of a child birth organization stresses the “underlying assumption" of this first conception “that medical knowledge is right” and “no knowledge is right until the medical profession has determined it is.

“We diminish the sensible and intuitive knowledge that everybody has by saying that it has to be verified by some medical trial or other. And I just have a little anxiety about us automatically accepting that the medical knowledge is correct because we have so many examples of where it jumbled and it's taken us some time to show that it isn't.”

204From this, how and to what extent can POs bring an original contribution to the production of knowledge?

205As noted above, POs can contribute to knowledge production far upstream, by redefining the questions that have to be investigated. For instance, they may integrate the notion of families' quality of life into the elements that have to be investigated, like the patient's quality of life. In many cases this type of change involves the development of new research tools:

"People tend to focus on clinical trials, but there are a lot of observational studies that can be made which are not clinical trials and which actually are the true-life experience of people. (.) Patients and groups of patients are becoming more involved in social science research, studying how medicines are used, for instance. So, we see research being done in focus groups of children that are using asthma inhalers and you all of a sudden find out that one of the biggest issues that children have is that they don't want their friends at school to know that they're hanging around with an inhaler because it doesn't look cool."

206Such changes may also be the result of the research community's inclusion of professions which were formerly excluded from research, and which renew the patients/users approaches and alter their role in the research process:

"Midwives in the UK have developed research and are beginning to do research they never did before. And they are looking at a much more holistic form of research which is qualitative research where they do in-depth investigation with individuals. And that is a way forward. And that can be a counter-offer to randomized trials."

207This also requires a change in the way lay people's contribution is considered:

"I think there is an underlying assumption that medical knowledge is right. And that no knowledge is right until the medical profession has determined it is. And an example of that is that every woman knows that a baby feels pain. A newborn baby feels pain and it is therefore logical that a baby in the womb feels pain. That's ascertained, actually. That was not accepted until trials were done in pediatric units to show the babies felt pain because they had been measured, so it then became accepted medical knowledge. And I think we diminish the sensible and intuitive knowledge that everybody has by saying it has got to be verified by some medical trial or other. And I just have a little anxiety about us automatically accepting that the medical knowledge is correct because we have so many examples of where it jumbled and it's taken us some time to show that it isn't."

208For another participant, there are "two ways of making patients and lay knowledge more credible" and accessible to researchers and public authorities. He is asking if these two ways are incompatibles and are “definitely moving in different directions, or if it is possible to “find some different ways” of making it compatible and "really favorable for everyone".

“One way is to play the rules of evidence-based medicine and say: we come with our questions, we construct knowledge, and we try to be experts as are the experts. We try to be professional and we try to demonstrate, through the rules of evidence-based medicine that what we have to say about ourselves is something which is -with a lot of quotes- but “true”. The alternative way is to focus on “sensible knowledge”, “knowledge from the body, «things that are not measurable, that cannot all be introduced and integrated into evidence-based medicine.»

209Research has a very professional definition. The fact that patient organizations produce expertise is not considered as part of research. An answer may be to “combine the things” by extending the definition of research itself.

210Further downstream, some mentioned their work of collecting data from members, which is likely to bring to the fore new problems and questions. For example, surveys by an organization on fibromyalgia have revealed an increasing number of cases among children - a phenomenon that is invisible in official statistics due to the debates and uncertainties that confine this pathology to a zone of indeterminacy.

The different ranges of knowledge of the “informed lay expert”

211What appears to be puzzling is that becoming an "informed lay expert" implies the learning of knowledge specific to the arenas of research and medicine. While mentioning the training sessions organized by the INSERM - a French national research institute - one of the discussants stressed the need PO, families and patients have to be able to read and comment clinical trial protocols. Another person focuses on the need for

“training, not only on medical topics, on the vocabulary and so on, but training on how to work in a committee and training also on how the system works, how the political system works, etc., so that we can know about the strategies, the tactics and so on. Because very often, we are called for a meeting and we receive the agenda just the day before, if we receive it at all. So, we have no time to discuss it in group. The reports of the meetings are sent months later and very often we feel manipulated. ”

212Another participant agreed with this but pointed out that not only the POs needed training but possibly the other actors as well, especially the institutions in charge of organizing these debates:

"It's actually the professionals that need training in doing their work better so it's more inclusive. And there are some very basic things, that, they think everybody should know but apparently the experts don't know, about how to conduct a meeting and to make it more inclusive. And I think it's all very well saying: you should train the patient to go in there and be assertive in the committees, but actually the committees should change the way they operate. So, it's not just about training, it's this balance point. And I always think of patient involvement as being a bit like a Trojan horse. Because, in a way, it's not just about getting patients involved for a specific task; to involve the patients should affect a process as well as the task. So, that involvement changes the way you do things. I think there's quite a long way to go yet. People have to realize that the way institutions behave has to open up in order to be more inclusive."

Informing and empowering the patient

213The participants mentioned the POs' very important role in training and in informing patients. They consider it essential not to leave the field completely open to pharmaceutical firms' communication, and to supply information that opens up possibilities for choice rather than closing them. But this implies thats information which allows for a real evaluation of available treatment is available upstream. One of the participants mentioned that her organization fights at the European level for access to all existing knowledge on safety and effectiveness, for: "at this moment, there's a lot of paper that should be publicly available and is not. It is kept behind closed doors in agencies."

214Some organizations go quite far in this process of teaching patients. The diabetes organizations are a case in the forefront of this teaching process:

"My association does technical sessions where not only doctors but also other diabetics are more involved in empowerment. They do some technical sessions with other diabetics in order to be aware of new drugs, new possible drugs, and new possible therapeutics. So, if, one day, they are in front of a document that the doctor gives them to sign, they can say: 'oh, I've heard of this. I have been on the internet and I've tried to get more informed about this subject.', so they can have a dialog with the expert."






5 Conticanet is a European network of excellence dedicated to connective tissue tumors, which is seeking to promote a better understanding of these rare tumors and to harmonize and optimize their treatment on the European level.

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