The dynamics of patient organizations in Europe
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1All discussions have been recorded and transcribed. For each workshop, a summary has been produced, highlighting the main issues of discussion, the convergence and divergence in the expressed viewpoints, and the conclusions that emerged from the confrontation of experiences and viewpoints. We drew upon these summaries to elaborate synthesis on each theme.
Social and political stakes of patient organizations as regards transformation, production, circulation and governance of knowledge
Major contributions of POs to knowledge
2Throughout Europe, POs have developed their activities and increased their influence. They now seem to be unavoidable actors in the health and medical field, especially as regards the circulation of information and the production of knowledge.
- POs carry out significant work of informing patients on the basic mechanisms of their diseases, existing treatments, the organization of care, and their rights, as well as on scientific facts and research developments. By equipping patients with new knowledge, they contribute to the transformation of their relations with doctors. They initiate the pooling of patients' experiences and thus build up valuable data on all aspects of daily life with a disease
- POs' role in research is growing. They can be consulted during the implementation of research projects and especially clinical trials, for a complementary point of view to that of professionals, on questions relative to quality of life or ethical issues. They act as intermediaries between researchers and patients, and participate in the recruitment of patients. Finally, they can provide specific information of use to researchers. In some cases - for the moment still rare - they may initiate research projects that they partially finance and steer.
- POs may participate in drawing up guidelines or recommendations on good practice, and promote the points of view of patients or users on all aspects of medical or even educational or social care or assistance.
- Their own contribution to knowledge is starting to develop, especially through the development of data collection tools or partnerships with certain professionals who are more open to new methods or research topics.
- Even though POs participate to varying degrees in this production of information and knowledge, they have different standpoints as regards experts and their knowledge. Some consider themselves as fully entitled to have their own, even critical, point of view on scientific knowledge; others delegate to professionals if not the elaboration of information, at least its control before dissemination. Likewise, during consultations to draw up guidelines or research programmes, the former allow themselves to discuss all the aspects concerned, whereas the latter limit their interventions to aspects, which are complementary to those dealt with by the professionals.
Problems, difficulties, and risks
- During discussions, significant disparities were revealed at European level in the governance of health and research in this field. The institutionalization of patients/users/citizens' participation is very uneven: whereas in some countries it is non-existent, in others patients' representatives sit on commissions purely in a capacity as observers, while in the most liberal countries from this point of view, they are full members of official organs (hospital boards, consultative committees in ministries or agencies, etc.). Their capacity to intervene in policy-making and in the drawing up of guidelines or research processes, on an equal footing with the other actors, is not recognized to the same degree everywhere.
- In cases where patient organizations are considered as partners in their own right, they face other difficulties: the material and human resources available rarely match needs; a few organizations have large funds enabling them to make use of professionals' services, but most others rely primarily on voluntary support; the required competencies and investments limit interchangeability between the different members of organizations; the absence of expense accounts - for travel, child-minding -, not to mention the remuneration for time spent, complicates their participation. Some feel that effective recognition of the contribution of PO representatives should involve a form of financial compensation, which puts the different actors on the same level.
- Patient organizations deplore certain difficulties in access to information. They consider that, to be able to produce documents of use to patients, they need to have all available information, especially on safety and efficacy, produced by firms and provided to government agencies with applications for authorization or refunding by health insurance. They also protest about the fact that the research, to which they contribute, primarily by participating in patient recruitment, is not systematically reported in publications and transmitted to them.
- The training of patient organizations' representatives seems to be a condition of efficiency that is once again difficult to meet. For the organizations to be able to appropriate the scientific literature, to propose translations accessible to their members, to participate on various bodies, and to react to research projects, they need to acquire some basic knowledge on the content and style of the various documents, from the research article to the clinical trial file. This knowledge is however by no means enough, and to apply it the organizations feel the need for training on institutional functioning in the health and medical field, and on its strategic and tactical aspects. In this respect interaction between organizations proves to be particularly rich, and the economic and social sciences contribute substantially to this reflexive work.
- On the other hand, the organizations do not always have enough hindsight to have a sound representation of their own action and especially their contribution to knowledge production. No truly in-depth work has been undertaken to describe and analyse their activities, which partly deprives them of a strategic resource. Some are more advanced than others on these aspects and are starting to wonder about a possible commodification of their knowledge, which might enable them to provide the resources they lack. This raises questions however on indirect consequences, and generates debate.
- Many organizations feel that they have a mine of knowledge within reach: the patients' cumulated experience. Some have already launched surveys, inquiries and data collections that will be used by the public authorities and/or administrations. In general, the feeling prevails of an insufficiency of financial, material and especially methodological means to transform these experiences into appropriable objects likely to interest other actors.
Recommendations for research agenda-setting and policy-making
3Recommendation #1: Recognize the role of patient organizations in the governance of knowledge and health policies.
4Europe can be a driver in a process of harmonizing national practices. In practical terms, as far as research is concerned, this would mean systematically including representatives of patient organizations or civil society in the elaboration of research programmes, the selection of projects and even the organization of scientific events. Interesting experiments have already been undertaken in this respect (e.g. "Meeting of Minds") but they still remain exceptions. Future measures should facilitate dialogue between the various stakeholders - civil society, researchers, firms, administrations, policy-makers - and not confine the debate to separate domains, as this complicates the subsequent translation of recommendations into effective research policies. The idea is that health and medical policies should not constitute a field apart -this approach is transposable for many issues, especially those concerning sustainable development - but perhaps rather a driving force, owing to the accumulated experience.
5Recommendation #2: Give patient organizations the means to act, which implies:
- Providing them with material and financial means relative to the services they render to the community. In-depth reflection should be undertaken on the modalities of this funding and on the potential effects of the various forms of funding that can be envisaged. Discussions have shown that there are several possible modalities which generate debate, but that in any case it is not acceptable for the organizations' contribution to collective reflection to be an "expense" or for a strong asymmetry to continue exiting between professionals and POs in this respect. Here again, Europe could be the locus of such reflection.
- Guarantee them access to the broadest possible range of information, especially information from firms or government administrations. Reflection on the evolution of tools for storing or disseminating research results should integrate the constraint of accessibility to a broader public than only the scientific community.
- Promote and support the training of representatives of patient organizations on scientific aspects, including by integrating the strategic and political dimension. This dimension could, as mentioned in the discussions, transcend the strict frame of non- profit organizations and spread to other stakeholders, especially public administrations. What does it mean today to organize the drawing up of recommendations in a pluralistic framework? How can the different forms of expertise be taken into account and discussed jointly?
6Recommendation #3: Make POs actors in their own right in knowledge production, which implies:
- The development of knowledge on the organizations' actual work today, which is still partially invisible. This relative invisibility has the effect of limiting POs' strategic reflection on these questions and depriving them of the benefits that they could derive from a comparative analysis of their activities.
- The development of tools for patient organizations to extract value from patients' experiences by creating interfaces between the associative world and the research world. Research programmes on these questions ought to be developed. Here again, the health field should not have the status of an exception but serve as a locus of experimentation with new approaches in which the user is put at the centre of the learning and innovation system.
Patient organizations and economic actors: opposition, "instrumentalization"or cooperation
POs and economic actors: contributions to new forms of relationship in the health domain
7The nature of the relationship between POs and economic actors was acknowledged as controversial and the debate over this topic was the focus of most of the discussion. Whereas common descriptions underline the relation of strong asymmetry between the two types of actors, this session highlighted the need for a better understanding of which organizations, diseases/conditions and areas of conflict are involved. In this sense, an analysis based on a model of cooperation versus conflict proved to be far from adequate as an account of these multifaceted relationships.
- Two main reasons for the cooperation between POs and industry were identified. The first is the need for financial resources, which is clearly the situation of those POs in an early stage of their existence or organizational development. The second is the need for research and development of innovative diagnosis, therapeutics and, especially, medications. This relationship is unavoidable for some POs, whereas for others it is something to avoid. Thus, if some POs use funding for actions of support and information to patients, others gather those resources to promote or improve fundamental research and the production of drugs or therapies on the diseases they deal with. As for the latter, the need for cooperation is obviously greater and is easier to achieve where there is no medication available or no major alternatives for treatment exist. Hence, the relationship POs - economic actors is based on different needs that may differ according to the convergence or divergence of the aims and commitments of the actors involved. Opposition, “instrumentalization” or cooperation may coexist or develop at different stages of the relationship, generating a range of configurations associated with particular organizational trajectories, national and international contexts, aims and missions and the very way health and disease are defined by a given PO, at a given moment in time.
- One difference that was specifically mentioned is that between the capacity and scope of action of single POs and of platforms or coalitions of POs. Differences in size and focus of intervention give rise to quite different paths of action and consequently to different outcomes of that action. The composition and shape of coalitions may vary. On the one hand, “umbrella organizations” may carry more weight and power; on the other hand, problems may emerge from divergent views of participants in the coalition. In the case of Europe, PO coalitions may be able to enter a more balanced relationship with the European branch of a pharmaceutical multinational. But it is important to acknowledge the diversity of economic actors in the filed of health. Some participants criticized the “myth of big pharma as a whole”, stating that smaller companies may have products to be used by POs according to their aims and interests, and thus they may become privileged partners of POs. We may conclude that the forms of PO-industry cooperation will vary according to purpose and to the perception of power asymmetries. Two different clusters of organizations may be broadly described as more willing to cooperate with industry or as more sceptical towards that kind of cooperation. This opposition was often stated using the opposition cooperation vs. conflict.
- A set of examples was given by those POs currently engaged in a more cooperative or favourable relationship to economic actors and pharmaceutical industry. The first was provided by a French diabetics organization originally run by doctors and then by patients. Here, there is a sense that the sense of transformation from the passive position of receptors to the active position of interlocutors, from the patients' standpoint, allowed a positive engagement with industry. The latter was regarded as a privileged partner in the sense that it allowed diabetic patients to improve their quality of life. A second example was provided by a rare diseases coalition, which, while acknowledging the unequal and sometimes instrumentalizing relationship between industry and POs, managed to achieve a partnership with industry, with the aim of empowering patients. A third example was that of an organization dealing with chronic illness and disability, with a very positive experience of cooperation. Patients were empowered in their relationships with doctors and in matters of information, medical treatment and compliance. In this case, the cooperation between POs and pharmaceutical industry was strongly stated as a form of partnership as valid any other collaboration, provided that the condition of patients improved.
- Another set of examples was given by those POs that currently have a more sceptical or oppositional stance towards industry. A first example was drawn from the experience of the deaf community. Here the organization members refuse the status of patient or disabled person as well as the use of devices such as cochlear implants, or of genetic testing during pregnancy. Representatives openly stated they do not constitute an interesting market niche and their priorities in terms of R&D are not part of the priorities of business. A second example of conflict was provided by an organization related to public health and drug regulation activism. In this case there was a negative view of those POs funded by industry, formulated in terms of a risk of manipulation; patients were likely to become mere consumers or subjects of advertisement and, eventually, agents of industry's own agenda. A third example was provided by an organization dealing with childbirth, criticizing current practices of drug regulation, especially cases of double standards associated with the disclosure in different countries, by the same company, of different information on a drug to be used during pregnancy. Similar critiques were aimed at other products, such as ultrasound devices.
- In the case of breast cancer, some patient groups seek new treatments and are willing to work with the pharmaceutical industry or other groups with a more ecosystemic orientation. They criticize the way the pharmaceutical industry pushes forward the agenda for therapies rather than prevention.
- Despite a variety of considerations on the nature and possibilities of cooperation between POs and industry, participants acknowledged that interaction had to be monitored closely so as to address issues of independence, transparency and credibility. The possibility of conflicts of interest were at the origin of some criticisms addressed at POs allegedly becoming ‘hostages’ to the industry, especially in situations in which the latter are the only or the main sponsor of a PO, thus threatening POs with the risk of losing their autonomy and credibility. This situation is compounded by the heterogeneity of both POs and industry and by the diversity of markets for a specific drug or disease, the connection being more controversial in regard to certain diseases or conditions than to others (e.g., mental illness).
- The relations between POs and industry have implied the emergence of new rules and modes of interaction: allocating industry's funds to a specific product; diversifying economic partners and publicizing the conditions for funding; establishing a limit to the amount of funding; elaborating a charter or guidelines; combining options for funding, such as allocating a proportion of the funding provided by industry to activities that do not threaten the continuity of the association; gathering funding partners in round-tables.
POs and industry relationships within health networks
8The analysis of PO-industry relationships should consider other sorts of relations that take place in the health domain together with the action, role and place of other actors in that network. In relation with this broader network of actors in the health space, two sets of conclusions can be drawn.
- The influence of the lay - expert divide on the PO/industry connection. As noticed above, there are other asymmetrical relationships to consider besides those between POs and physicians and POs and researchers that apparently do not address patient's needs as often as they would like. Where the divide between POs and professional communities is stronger, cooperation between PO and industry is facilitated and it may be the case that the PO resorts to the economic partner to improve its position and leverage vis-à-vis other actors. The nature of that relationship appears as more cooperative if the entire network is considered.
- Another set of conclusions has to do with the triangular relationship of POs with industry and the State. From the point of view of Pos, it seemed difficult to understand what could be the role of the State regrading the relationship PO-industry, since there could be very diverse configurations depending on what is at stake, for instance support for a treatment for a recognised chronic illness (e.g. diabetes) or struggle for the recognition and development of research on a certain disease or condition (e.g. rare diseases). Different stakes for industry and POs are related to the differences between what is interesting for private and for public research. So the convergence of interests between POs and industry becomes clearer if a closer look is taken at the differences in public or private research and investment, especially when there is no involvement of public research on topics of interest to POs.
Recommendations for research agenda setting and policy-making
9Recommendation #1: Cooperation between POs and the industry is a controversial issue, mainly because of the possible conflict of interest. When considered possible and desirable by the actors, the collaboration between POs and the industry should be constructed by taking into account a number of conditions, including: i) the need of the POs for financial resources; ii) the need for investment in certain areas of biomedical research or in the development of therapies, especially where there are none available; iii) the perception of an asymmetric relation of POs with other actors, such as professionals and the State; iv) the degree of professionalization or influence of POs, implying a greater ability to mobilise wider resources and at the same time controlling them; v) the focus of POs on diseases or conditions requiring immediate, continuous or new treatment, such as rare or chronic diseases (pathology-driven organizations), in contrast with other organizations focusing on more broader concepts of health and/or on the demedicalization of certain conditions or practices (disability, mental illness, deafness, childbirth); vi) the absence of public research in domains of interest to the POs.
10Recommendation #2: The role of public authorities in relation to drug regulation, pharmacosurveillance, ethical issues and property rights and patents is crucial for the creation of an appropriate legal and regulatory environment for PO action.
11Recommendation #3: Research centres should be called upon to mediate exchanges between patients and industries and between patients and researchers. Some specific programs exist allowing for productive interactions between representatives from POs and from scientific communities, for example in France. Participants stated clearly that this type of initiatives is crucial for enabling POs to discuss and identify general and common questions that go beyond their specific agendas, including the advancing of research orientations. Other recommendations in terms of research were made, notably the possibility and interest of a comparative approach to the relationships POs and the industry have with research institutions, or alternative ways of funding and developing research.
12Recommendation #4: The questions raised by the relations between researchers, universities or public research organizations and the industry should be compared with the experiences of collaborations between POs, charities and foundations and industry, as common problems seem to emerge in both types of situations.
13Recommendation #5: Initiatives developed at both the European and the national level to encourage the participation of organizations in research and the cooperation between researchers and communities (in France, the PICRI - Partnership Institutions-Citizen for Research and Innovation) should be assessed for their capacity to stimulate the involvement of POs in the design of research policies. This should be extended to a broader exploration of other types of partnerships to be developed between patient organizations and other civil society organizations
Social and political stakes of associative networks, coalitions, and collectives
14Discussion has shown the heterogeneity of what we call "coalitions", both in the way they are organized and governed, and in the nature and level of political action they develop. Despite this diversity, participants have pointed to common concerns about coalitions, from which a few policy recommendations can be drawn. This synthesis will first summarize what participants have considered as major contributions of coalitions; then it will recap what they have seen as the main problems, difficulties and risks that coalitions are actually confronting; finally, it will offer a few recommendations on how to move ahead in our understanding of coalitions, and on how to help policy-makers to ensure more efficient partnership with coalitions.
Major contributions of coalitions
15Although some POs are reluctant to join coalitions on a formal and perennial basis, because they fear a loss of identity (more on this later), those who have coalesced, or are about to coalesce, have pointed to the value-added of coalitions in various respects.
- Coalitions often hold greater authority, legitimacy and power vis-à-vis policy-makers, than individual POs. For many POs, coalescing, networking, allying, mean being more numerous, and hence stronger, to be able to put pressure on political authorities and institutions. By gathering numerous organizations that act locally, coalitions are able to bring shared or transversal issues at “upper” levels (national or European).
- Individual POs often benefit from their membership to larger coalitions when defending their own causes. This is notably the case when issues that individual POs are concerned with are controversial: by calling upon knowledge, experiences and actions developed within coalitions, individual POs are better equipped in their efforts to argue for certain solutions. Politics of numbers thus empower both the collective and the individuals.
- Coalitions offer an opportunity for mutual and collective learning between members. This concerns not only “things that work” and “things that fail”, but also how individual POs that basically defend similar issues conceive of their action and identity. Many participants have pointed to the fact that this actually helps to open up their minds to various situations, and therefore to strengthen solidarity while paying attention to differences.
- European coalitions are the locus for learning about the way certain problems are framed within different national contexts, and therefore places where individual POs come to experience what is this European space for patients' activism, and how to behave and evolve within this space. European coalitions are instrumental in developing a feeling of being part of a larger collective than national communities, as well as in being able to stand together despite important national discrepancies.
Problems, difficulties, and risks to which coalitions are confronted
16Although many participants have put forward the motto “Unity is strength”, they have pointed to problems, which entail the making of unity. They warn against a romantic view of networking, allying, coalescing, and raise a series of difficulties that may threaten collective action.
- The shaping of common issues is not self-evident. Shared or transversal issues do not exist naturally: they have to be defined, worked on, and negotiated. Certain issues are amenable to collective framing of action, whereas others are too divisive. How to behave vis-à-vis the industry for instance, is one confrontational issue that may lead coalitions to fall apart. Therefore, issues do matter, and coalitions have to move cautiously and pragmatically when tackling certain problems.
- The dilution of individual POs within large coalitions whose membership is usually very diverse, sometimes including professionals, is seen a major threat. For many participants, coalitions should not necessarily be places where individual POs come to speak with one voice, but rather places where they come to speak together while allowing each to speak with its own voice. One participant has coined the Dutch word "polderization" to warn against individual POs loosing sight of their own causes and identities, while trying to establish a loose consensus. "Polderization" is seen as a pervasive threat that may turn the coalition into an empty nutshell at the end of the day.
- The risk of “polderization” translates in one crucial challenge for coalitions: their internal governance. Basically, the question is how to maintain democratic participation within coalitions? Certain members may feel at ease and be very active, whereas others may be unable to keep up and decide, more or less intentionally, not to voice their concerns. The discussion has shown that there is no "one-size-fits-all" recipe for running coalitions: various technologies and procedures are mobilized, invented, put to test, and sometimes redesigned, depending on the issues at stakes and the context into which each coalition evolves.
- The lack of financial and human resources is one critical problem for coalitions. Coordinating various organizations whose cultures of action are different (notwithstanding the problem of languages when it comes to European coalitions), ensuring that nobody is left aside, leaving room for discussion and collective reflection, are time-consuming, and come in addition to members' involvement in their own organizations. Whereas certain coalitions can afford paying staff, others cannot, or do not want to entrust professionals to do the job.
- Apart from scarce resources, the level of expertise and know-how that is needed to participate in coalitions is one limiting factor for certain members' involvement. Some participants have voiced for training as one important activity that coalitions should provide its members. Training entails not only the acquisition of generic skills (listening to others, leading projects, speaking in public), but also of highly technical knowledge on specialized issues (administrative, scientific, judicial...), as well as practical know-how on how to act at the interface of POs and civil society organizations on the one hand, and administrations and institutions on the other hand.
- Last but not least, the bureaucratic and technocratic burden imposed from the outside to coalitions is another major problem. Both at national and European levels, health administrators tend to consider certain coalitions as representatives of the world of patients, users, and citizens. These coalitions are very frequently asked by institutions to circulate information, to comment on recommendations and laws, to speak on behalf of patients, users and citizens. This puts pressure on coalitions: on the one hand, they do not feel comfortable in representing alone the world of patients at large; on the other hand, they feel like they are sometimes mobilized afterthought, when official documents are about to be released, and fear that bureaucratic and technocratic approach might kill participation in the long run.
Recommendations for research agenda setting and policy-making
17Recommendation #1: Procedures for identifying and choosing stakeholders should be defined and made transparent
18Although policy-makers are eager to include various stakeholders in the elaboration of health policies, they more often than not consult and partner with a limited number of coalitions, either because these coalitions are powerful players, or because they are endowed with an implicit role of representatives of the "patients' world". What we have learnt from the conference is that coalitions are very diverse, and are multiple even within a single condition area. Diversity and multiplicity are co-substantial to the development and the dynamics of coalitions of POs, and should therefore be considered as such if genuine participative democracy is to be achieved.
19This comes with one element that should be put on the research agenda. Following some scholars who have warned against a homogenized view of coalitions as new social movements, in-depth empirical analysis are needed to document and characterize the species of organizations that coalitions of POs come to constitute. Why do they form? What are their membership and constituencies? What causes do they stand for? How do they position vis-à-vis one another? How do they conceive of their relations with various stakeholders? How do they gain institutional recognition? To what extent do they transform their members' modes of activism and identity? All those questions need to be addressed if social scientists are to help policy-makers to consider the variety of coalitions.
20Recommendation #2: Support should be provided to coalitions in order for them to meet and to learn mutually about tools they invent to express their concerns
21Involving coalitions as stakeholders makes a difference insofar as policy-making process is run differently. Top-down process is the rule rather than the exception in institutions. This is reinforced by the fact that bottom-up procedures and tools mobilized by coalitions are not always very visible, including within the patients' world. These procedures and tools are worth being publicized and discussed if policy-making process is to be changed. This should be done on a regular basis, for as the discussion during the conference has shown, some procedures and tools used by coalitions for their internal governance as well as the conduct of their political action, are very new and still on trial.
22In terms of research agenda, it would be valuable to study empirically the different means that coalitions rely upon to voice their claims and express their concerns. How do they frame and materialize their arguments? To whom and how do they circulate them? To what extent tools and procedures they use might be adapted to different contexts? All these questions may be reflected together with coalitions themselves. If there is one single lesson we will draw from the conference, it is that participants have been highly interested in interacting with each another, and are very much in demand of "neutral" places to meet, to better know each other, and to exchange their experience. This is where co-operative research might add value to current initiatives for improving governance of health issues.
23Recommendation #3: Opportunities should be provided for institutions to experiment new forms of governance, notably at European level
24The proliferation of coalitions of POs, especially at European level, suggests that Europe, at least in the domain of health and medicine, is a formidable place for advancing new forms of citizenship. Despite many criticisms against the bureaucratic and technocratic functioning of European institutions, against the loss of identities that European people are possibly confronting, European coalitions of POs demonstrate that Europe is worth considering as an experimental space for alternative ways of doing politics. For this to be achieved, institutions should also be given room for experimenting new forms of governance.
25At the very least, some research should be devoted to analyzing the Europeanization of coalitions of POs. So far, no study has been done on what exactly is this “level” of political action that European coalitions of POs are targeting, neither on to what extent such action differs from politics as usual. Besides, very little is known on the concrete means provided to European institutions to actively accompany this dynamics. Finally, although institutions are not fluid entities, and to be fair, are not designed to be so, it is worth to provide them with some latitude to experiment different ways of doing politics.
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