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The dynamics of patient organizations in Europe

 | 
Madeleine Akrich
, 
João Nunes
, 
Florence Paterson
, 
et al.

Chapter 3. Social and political stakes of associative networks, coalitions, and collectives

Texte intégral

STATE OF THE ART

1Vololona Rabeharisoa

2It is striking that patient organizations and/or health movements maintain many bonds with one another, both formal and informal, perennial and temporary. These bonds are set in differing configurations, of which three main types can be distinguished.

3First, certain organizations, especially those which are nation-wide, have structurally affiliated groups representing them at local level. These groups may be relatively autonomous but they are supposed to represent their "parent organization" and relay its action at local level. Their functioning is therefore something like trade unions. This configuration has existed for a long time. The associations managing institutions for disabled people are an example of this model, with national headquarters and local representatives or agencies.

4Second, various national organizations, all concerned by the same disease or problem (e.g. diabetes), may belong to a regional or international umbrella organization. This configuration is also old. These national organizations, independent of one another, constitute coalitions capable of defending their cause at international level, as in the case of DPI (Disabled People International), for instance.

5Third, certain organizations, whether they are preoccupied by the same problem or not, may decide at some point to unite around a clearly defined action or to build relationships with a view to addressing common issues that transcend the particular causes for which they were created. In France this is the case of the group TRT-5, for example, to which several Aids organizations belong. Each one has its own orientations and preoccupations but they have formed an alliance to defend patients' access to new molecules (Barbot, 1998). Other examples include certain European organizations focused on women's health, for instance. They group together associations dealing with issues and problems ranging from breast cancer to women's education or childbirth.

6This typology does not cover all possible configurations. It is simply intended to highlight the heterogeneity and complexity of the links established between POs and/or health movements. To what extent can we talk of these associative networks, alliances and collectives as places of renewal of activism and invention of original forms of mobilization? What impact do these relations and inter-associative actions have on the problematization and institutionalization of health problems?

7The literature on these subjects is scant. It nevertheless points in several directions that remain largely unexplored and where reflection and especially empirical documentation could be fruitful.

Inter-associative networks, alliances and collectives: new social movements?

8Studies on inter-associative networks, alliances and collectives all follow the same pattern. First they identify and study independent, established groups with related focuses. They then examine relations between these groups. In other words, it is not the networks, the alliances or the collectives as particular forms of organization that constitute the subject of this research, but the relations of cooperation (or competition) between entities which otherwise have an independent existence. From an analytical point of view, this has a significant consequence: the existence of these networks, alliances and collectives is considered as the objective manifestation of the emergence and development of new social movements. In their study on health consumer groups at national level in five condition areas in the UK (arthritis and related conditions; cancer; heart disease and strokes; maternity and childbirth; mental health), Baggott, Allsop, and Jones (2004) sum up their observations as follows:

"Research shows that groups share a common discourse and follow similar participative practices, and there is extensive networking. Informal and formal alliances have formed to pursue joint action and indicate a wider health consumer movement."

9The precise characteristics of this "wider health consumer movement", especially as regards the forms of activism implemented as well as its effects on the various groups involved, nevertheless need to be explored in greater depth. In their very rich and detailed book, Baggot, Allsop and Jones (2004) note that health consumer groups maintain dense relationships, are engaged in cooperation, and share values in terms of the ethics of caring, ways of working, and the privileging of experimental knowledge. Steven Griggs (2006) in his review nevertheless suggests that:

"More might have been made of explanations of the formation and reproduction of collective identities and the dynamics of movements as advocacy coalitions or discourse coalitions within the context of health consumer groups."

10The new social movements analytical framework is both convenient and problematical. It enables us to denote broad, diffuse collective claims by communities of patients, healthcare users or citizens, yet at the same time it tends to reify the variety of issues and the forms of intervention that different groups have implemented to define and negotiate between themselves and with their environment. Stuart Blume (2006) explicitly poses this problem in his work on anti-vaccination movements:

"How much theoretical sense it makes to view anti-vaccination groups as (new) social movement organizations (as distinct from pressure groups or self-help organizations) is as yet unclear. In any event there is no simple and unambiguous demarcation criterion."

11As an engaged anthropologist, Stuart Blume is concerned about the consequences that this assignment of various anti-vaccination groups to a single new social movement could have, regarding both their public identification and the future of their demands:

"From a public health perspective, however, to focus attention on organized opponents of vaccination is appealing because it unites health professionals behind a banner of reason. At the same time it diverts attention from a potentially disruptive critique of vaccination practices; the critique in fact articulated by many parents. In the light of current theoretical discussion of 'scientific citizenship' this paper argues that identifying anti-vaccination groups with other social movements may ultimately have the opposite effect to that intended."

12This criticism should not be seen as a reason to jettison the notion of "new social movements". It is however necessary to empirically document the collective dynamic that leads activists sometimes to create new social movements and at other times to devise different ways of defining their identity and their action (Landzelius, 2006). Several authors have paved the way. In their work on the extension of mobilization around the Aids epidemic, for instance, Broqua and Jauffret-Routside (2004) highlight the co-existence of different forms of mobilization by various groups, all active in the battle against Aids yet without constituting a new social movement per se:

"[...] the collectives of patients have shown various configurations, from consensual groups which developed in the thirties to protestor groups emerging within the seventies. We show here how both in AIDS and drug addiction, the collectives of users multiplied through differentiated public identification choices. In the fight against AIDS, all the forms of mobilization coexist".

13Janine Barbot and Nicolas Dodier in France and Steven Epstein in the US have also shown the heterogeneity of Aids organizations and the complexity of their relations. In his work on the history of social movement organizations which have formed around the mental health system in the UK over the last forty years, Crossley (2006a, 2006b) proposes to enrich the social movement concept by paying attention to the multiple entanglements and oppositions between different organizations which, in the long term, have configured and transformed critiques of the mental health system in the UK:

"My argument is that movements should be understood as 'fields of contention'. This concept, as I develop it, emphasizes two key aspects of social movement mobilization. Firstly, departing from traditional models of movements, which tend to view them as unified 'things', it draws our attention to the numerous groups and agents who interact within the internal space of a 'movement' and to the relations, alliances and conflicts between those various groups/agents as they unfold through time. Secondly, it draws our attention to the embedding of social movement struggles within multiple differentiated contexts of struggle, each of which affords different opportunities for struggle but each of which makes different demands upon activists if struggle is to prove effective."

14These different studies highlight a set of questions that warrant in-depth empirical investigation. Data and analyses are needed on the species of organizations that associative networks, alliances and collectives actually constitute. Who are the members of these organizations and what are the relations between the different levels comprising them? Who do these organizations intend to federate and represent and what is their range of action? How do the members of these organizations negotiate the common cause(s) that they share and to what extent can we say that they participate in the same social movement? How are common ways of doing things and of thinking shaped, and how do they act in turn on the identity of each of their members?

Associative networks, alliances and collectives: new political actors?

15An important aspect raised by the literature concerns the capacity that associative networks, alliances and collectives have to participate in the definition and implementation of healthcare policies that take patients, users and citizens into account. The above-cited work of Baggott, Allsop and Jones shows that the British government's interest in health consumer groups stems from the finding that there is a lack of democracy in the functioning of the NHS. By organizing themselves in networks, health consumer groups impose themselves as representatives of patients, users and citizens in dialogue with healthcare administrators. In other European countries this issue of health democracy is also on the political agenda. In France, for example, recent laws on healthcare users' rights have resulted in strong incentives by the authorities for diverse patient, user, citizen or victim groups to organize themselves in collectives so that they can be present in negotiations along with the other stakeholders. At European level the accent on governance is surely not unrelated to the proliferation of European patient organizations in recent years. In other words, associative networks, alliances and collectives seem to constitute the means for an institutionalization and politicization of grassroots activism. It is moreover in these terms that certain European patient organizations define their action. The head of the European Parkinson's Disease Association explains:

"Organisations such as the European Parkinson's Disease Association (EPDA), the European Federation of Neurological Societies, and the European Brain Council have an important role in initiating and sustaining a dialogue between medical science and society to improve the quality of life of patients and families living with Parkinson's disease (PD) and other brain diseases. The mission of these organisations is to educate Members of the European Parliament and European Commissioners about diseases of the brain and their impact not only on patients, but also on the workplace and society.

To achieve this end, there must be a united voice, and this requires both horizontal and vertical alliances and integration [.] It is crucial that there is a consistent message that reflects the needs of patients and focuses attention on how those needs as well as those of society generally can best be met with the resources available." (Baker, 2005)

16The exact role of the national and European authorities in the development of these associative coalitions still needs to be examined. Although many studies have been devoted to the internationalization of NGOs (Anheier and Themudo, 2002; Simeant, 2005), none are available on the associative world. A great deal of spadework still needs to be done.

17Some authors have nevertheless examined the impact of these associative coalitions on health policies. Baggott, Allsop and Jones have mixed results. On the one hand, they consider that the social movement constituted by health consumer groups has the potential for patients and carers to shape services in ways more responsive to their needs, especially since governments have increased the opportunities for participation. They note that health consumer groups benefit from a relative ease of access to government, concluding that they should now be generally considered to be part of the policy network in health. On the other hand, they recognize the continued predominance of medical power, despite the challenge of health consumer groups. Wood (2000) draws a more pessimistic conclusion from his study on the political activism of 500 POs in Britain and the US:

"The overall picture is one of failure to work together to increase their ability to influence policy makers in both countries."

18The problem therefore seems to lie in the POs capacity to organize themselves in networks in order to become effective political actors. Wood nevertheless tempers his pessimism by considering that the action of European POs illustrates the emergence of a real awareness of the need to unite:

"The growth in national, and regional, e.g. politically successful pan-European umbrella alliances, is an indicator that patients' associations mean business and want to work together despite an environment that forces them into competition over funding."

19These studies point to the need for in-depth surveys to fully document the nature and impact of associative coalitions' political work. How, at what level and on what terms is this work planned? In what ways does it participate in the institutionalization of the associations' claims, and how does this institutionalization threaten the associations' identity and protest power? What about European POs, in particular, which have proliferated in recent years?

Completing the literature review by a state of existing practices

20The above literature review shows that studies on associative networks, alliances and collectives are still in an early stage. It is moreover clear that a better understanding of practices on the ground would not only contribute substantially towards answering the questions raised above, but may also expand the range of investigation to subjects not addressed in the literature. This is why we have chosen to set up a focus group consisting of several representatives of associative coalitions, around the following three sub-themes. These three sub-themes have been defined on the basis of a preliminary survey undertaken on 69 European POs, a subject of particular interest in the MEDUSE project.

21What are the principles on which association networking relies, in particular at the European level? What does this networking enable associations to do? Our preliminary study on a sample of 69 European organizations shows that European associations are often members of one another, and form sets of dense and multiple networks of relations. This tends to show that their relationship does not occur according to a hierarchical or task-sharing principle. Rather, it seems that these relations enable organizations to act at different levels (to act together towards European decision-making bodies for instance) while preserving their own missions.

22Networking and mutual and collective apprenticeship of different forms of associative action. Within associative networks, coalitions and collectives, mutual learning is occurring on the causes that each of them stands for, on specific problems related to their diseases and/or to health systems in their respective countries. Apart from this, one can assert that they also learn collectively about the different forms of associative action implemented by each one of them. In its presentation, Eurordis explicitly mentions NORD as a model that has inspired its action. It would be interesting to document these learning and modelling effects.

23Networking and coalitions of causes. Still on the basis of our preliminary study on a sample of 69 European organizations, it appears that European networks, coalitions and collectives do not consist of an assortment of causes, but of an abstraction of individual causes, which enables organizations to move towards general causes. In other words, these networks, coalitions and collectives are not essentially devoted to representing the diversity of associative causes. Rather, they aim at raising questions related to the delimitation of the field of medicine and health, the institutional acknowledgement of emergent heath problems, etc., and to taking a common stand on these matters. One can assert that, in this process, patients and patient organizations tend to set aside problems related to their specific diseases or conditions, in order to invest a wider citizen space. Movements centred on health and environment seem to exemplify this new problematization of health and medicine. More widely, this third sub-theme could enable us to re-examine the question of new social movements in the field of health and medicine.

PRELIMINARY REFLECTIONS.

Coalition as an hybridisation tool between consumer and family groups, patient groups, mutual insurance organisations and health-care professional bodies.

24Patrice van Amerongen, Medicines in Europe Forum

25Good morning. I am Patrice Van Amerongen, my name is Dutch but I am French. I was head of the psychiatric department during 25 years. I am retired now. I am a member and volunteer of the association UNAFAM (Union des Amis et Familles de malades Psychiques) which is the Union of friends and families of persons with mental illness. Since 2002, I am also a member of Medicines in Europe Forum (MiEF), on behalf of the UNAFAM.

26My purpose is to make a brief presentation of the objectives of Medicines in Europe Forum, and to discuss the questions raised by the functionning of a collective which gathers different types of organizations around a same goal, which concerns medicines in Europe and pharmaceutical policies.

Medicines in Europe Forum

27Medicines in Europe Forum (Collectif Europe & Médicaments) is a European umbrella organization gathering consumer organisations, patient groups, health-care professional bodies and mutual insurance organizations. This collective has launched an initiative to increase awareness among the public and policy makers of developments in pharmaceutical policy from a patient perspective.

28More precisely, the person is at the center of the statement and of the involvement of Medicines in Europe Forum. Labelling the person raises a problem, as for our collective organization he/she may be a patient, but is also a citizen or a consumer. All of us are citizens or consumers, and a few of us are- or have been- patients. But using this term is quite difficult in as much as in the common language “patient” may have a pejorative sense.

29Medicines in Europe Forum is concerned with the person with acute or chronic illness, even though problems raised by medicines and pharmaceutical policies have a greater impact on the daily life of people with chronic illnesses. The person our action is centred on is a person who needs real and long term information about the diseases and treatments, in terms of efficacy, safety and convenience of the treatments. It is a person living within a family circle, a circle of friends and of neighbours; for me, and for the UNAFAM, it is important to talk about the environment of the person because it is not possible to treat someone without the family and the friends. It is a person able to provide information about his/her treatment and its possible side effects. It is also a person able to advice the EU commission and the pharmaceutical industry.

30Medicines in Europe Forum was created in 2002 in reaction to worrying proposals of medicine directives and regulation by the EU Commission, and with the aim of ensuring that European pharmaceutical policy serves the public interest.

31The rationale is:

  • Information for the consumers, patients, citizens.
  • Reliable information.
  • Health matters, healthy life style, health problems, medicines.
  • A well informed patient, citizen, or well informed relatives, can understand, participate, eventually choose his/her own therapy and contribute to the monitoring of adverse effects of treatments.
  • Health is a political and an economic challenge. The MiEF is a representative of the citizens in the field of health and constitutes a democratic means to inflect political decision.
  • Medicines in Europe Forum gathers today1 sixty member organizations, which belong to four different families of actors in the field of health:

321. Family and consumers organizations:

  • Asociación de Usuarios de la Salud (ASUSALUD)
  • Conseil National des Associations Familiales Laïques (CNAFAL)
  • CSF (Confédération Syndicale des Familles)
  • Familles Rurales
  • HAI (Health Action International Europe)
  • Institut National de la Consommation (INC) et la revue 60 Millions de Consommateurs
  • KILEN (Consumer Institute for Medicines and Health)
  • Organisation Générale des Consommateurs
  • Social Audit
  • UFC (Union Fédérale des Consommateurs) et la revue Que Choisir
  • Union Féminine, Civique et Sociale
  • UNAF (Union Nationale des Associations Familiales)

332. Patient groups:

  • Act Up Paris
  • Act Up Toulouse
  • Actions Traitements
  • AFP (Association Française des Polyarthritiques)
  • AIDES
  • ARCAT (Association pour la Recherche, la Communication et l'Accès aux Traitements),
  • Association de Lutte, d'Information et d'Etudes des Infections Nosocomiales (Le Lien)
  • Dessine moi un mouton
  • EFA (European Federation of Asthma and Allergy Associations)
  • FEES (Federacion Estatal de Escuelas de Prevencion de Sida)
  • FFAAIR (Fédération Française des Associations et Amicales d'Insuffisants Respiratoires)
  • FNA-PSY (Fédération Nationale des Associations d'(ex) Patients PSY)
  • FNAMOC (Fédération Française des Associations de Malades Cardio-vasculaires et Opérés du Cœur)
  • FNATH (Fédération Nationale des Accidentés du Travail et des Handicapés)
  • Grupo de Trabajo sobre Tratamientos del VIH/SIDA (GTT)
  • HIV I-Base
  • LNCC (Ligue Nationale Contre le Cancer)
  • Le Collectif Migrants contre le sida
  • Ligue des Diabétiques de France et la revue Diabète & Nutrition
  • Lila CEDIUS - Centre for human rights and public health
  • RESEAU D.E.S. France
  • RESHUS (Réseau Hospitalier des Usagers)
  • Sida info Service
  • UNAFAM (Union Nationale des Amis et Familles de Malades Mentaux
  • UNALS (Union Nationale des Associations de Lutte contre le Sida)

343. Mutual insurance organisations:

  • Agencia de Cooperación Internacional farmacéutica
  • AIM (Association Internationale de la Mutualité)
  • Alliance Nationale des Mutualités Chrétiennes
  • La Mutualité Française
  • Mutualité Socialiste de Belgique

354. Health-care professional bodies:

  • AMP (Association Mieux Prescrire) and la revue Prescrire
  • Arznei-telegram
  • Buko pharma-kampagne
  • CRIM Rennes (Centre régional d'information sur le médicament)
  • Der Arzneimittelbrief
  • Dialogo sui farmaci
  • Federación de asociaciones para la defensa de la sanidad pública (FADSP)
  • Fundació Institut Català de Farmacologia
  • Geneesmiddelebulletin
  • Groupe de Recherche et d'Action pour la Santé (GRAS)
  • Informazioni sui Farmaci
  • ISDB (International Society of Drug Bulletins)
  • Mario Negri Sud
  • Muy Ilustre Colegio Oficial de Farmacéuticos de Valencia
  • Pharmaca and Bilten O lijekovima
  • Plataforma para la Defensa del Modelo Mediterráneo de Farmacia
  • Réforme & Santé
  • RELIS Ost Drug Information Centre
  • Ricerca & Pratica
  • Syndicat de la Médecine Générale
  • USPO (Union des Syndicats de Pharmaciens d'Officine)

On the difficulties of managing diversity in the Medicines in Europe Forum

36Member organizations share common concerns and their opposition to proposals made by the EU Commission and by the pharmaceutical industry. But being a European umbrella organization raises several difficulties.

37The first are linked to the great variety of goals and positions of the member organizations. For instance, family and consumer organizations, unlike patient groups, do not represent patients; among the patient groups, I am the only one in the MiEF to be a family group representative; from the point of view of patient groups, third party payers may seem difficult to manage because they pay but sometimes for things that are not very useful.

38The second difficulty is linked to the degree of involvement of member organizations. Some of them are really working and taking part in the activity of the MiEF, but others seem to be sleeping, while others are only sleeping with one eye open.

39Member organizations are located in 12 different countries of the European Union. With only a dozen of countries it is not really Europe. Nevertheless this geographic diversity raises also a difficulty, which is to mix all the positions, because there isn't really a common language.

40Finally, it reveals quite difficult to meet all the members of the forum, although there are greater possibilities with active members and with semi-sleeping members.

The choice of topics of interest

41As we have seen, Medicines in Europe Forum is an initiative set up to deal with issues linked to pharmaceutical policies from a patient, citizen or consumer perspective, but it doesn't mean it is a patient organization. Its action is not grounded on an opposition to the pharmaceutical industry or to the initiatives of the European Medicines Agency (EMEA) and the EU commission, neither to those of national health organizations (physicians, policy makers and managers).

42Medicines in Europe Forum is a crossectional health group for progress in public health and pharmacovigilance. Pharmacovigilance is a key feature of the patients' treatment and also of medicine and of all the devices set up to provide treatments.

43The main topics of interest that were collectively chosen are the following:

  • Directives and regulation of the European Parliament and of the Council of the European Union (Directive 2001/83/EU amended by the directive 2004/27/EU); paediatric regulation; direct-to-consumer advertising (DTCA)...
  • Pharmaceutical forum. The Pharmaceutical forum is a key meeting with controversial point of views for us. The working group on information to patients released two documents for public consultation, a list of quality criteria and a model package of information on diseases (using diabetes as a first example). Some members of MiEF are members (es quality, as consultant) in the forum. Mutual insurance, third party payers or representatives of specific professional organization gave their own advices. MiEF cannot in all conscience take part in this consultation, but as key stakeholders give an opinion in an open letter “we are opponent about direct information to consumers”. According to the principle of freedom of the organisation, each member has the possibility to work in its own interest.
  • Daily life difficulties for a consumer or a patient: package (or patient) leaflet, rINN (recommended International Nonproprietary Name, i.e. generic name given to a pharmaceutical substance) or DCI (dénomination commune internationale / Compendial (European Pharmacopoeia) name given to a pharmaceutical substance), comparison between drugs, alternative possibilities ...
  • Future of health: prevention, cure, care ...
  • The decisions about the choice of the topics of interest of the Medicines in Europe Forum are more or less easy to make. They are made through contacts between member organizations. The means used for these contacts are physical meetings, phone conferences or personal phone calls. Other technical means are used, such as sharing news, technical information by professionals and networking.

Medicines in Europe Forum: its formal and informal organization, and principles for a collective action

44The implementation of the MiEF's missions occurs through a formal and informal organization. The official statute of the MiEF is now in progress, under the acronym ACCEM (Association pour la Coordination du Collectif Europe et Medicament).

45The organization of the activities is based on voluntary involvement of member organizations and grounded on the principles of equality, freedom, possibility of coming out of- and coming back to the organization, and of interdependence if necessary. The punctual intervention of member organizations is also possible.

46What about the disagreement and competition which can possibliy occur in coalitions? As concerns the MiEF, the diversity of the topics chosen explains the solidarity between all the member organizations. We have conflicts like in a normal family, but the internal rules that were adopted allow a good functioning. The rules are based on the following principles:

47Spirit: the contribution of the member organizations are made in a spirit of implementation and accuracy as concerns information about health, illness, treatments (be they new or old treatments), prevention and transparency.

48Hierarchy: there is no hierarchical structure within the MiEF, each organization deals with the main topics of MiEF, while dealing with issues of it's own interest.

49Funding:the funding raised by donations or other types of contributions is exclusively used for management purposes (phone conference, leaflets, travelling expenses...), which excludes any kind of payment for the persons who work for the MiEF on a volunteer basis.

Conclusion

50Medicines in Europe Forum is an umbrella organization dealing with one purpose “the health of the person (patient, citizen, consumer) in his/her daily life”. In conclusion, I would like to say that the essential purpose of this coalition is that unity is strength, l'union fait la force, en français: health policies require good information, transparency, anticipation and supervision from patient organizations and free coalitions at the national or European levels.

A variety of coalitions: the case of mental health

51Stephanie Wooley, Association France-Dépression

52My name is Stephanie Wooley, I'm originally American and I've been living in France now over half my life. I have been hospitalized personally three times in my life for manic episodes. I'm a person suffering from bipolar disorder, perhaps you're a little familiar with this, and in fact it was my experience in France that triggered my interest in improving conditions and care for persons suffering from mood disorders.

53I was hospitalized in three different countries - in the US, France and Greece - so I guess you could say I have international experience in terms of care! And now that I have been living in France over half my life, I can see the differences perhaps between the way things are handled in the United States and in France or in Europe, in general.

54France-Dépression2 was founded in 1992, which was basically the beginning of any kind of activist work by patients in the country regarding mental health.

55We have three main objectives, the first to inform and support persons concerned by mood disorders, whether they're patients, carers, parents or health professionals.

  • 3 National Institute for Health Prevention and Education (Institut national de prévention et d'éduca (...)

56Secondly, we work on fighting the stigma attached to mental illness, in general, i.e. to promote mental health. There has been a major shift from the days when we talked about "mental illness", and today, we talk more about promoting "mental health". This can be seen in fact, in the way our organizations are referred to by other organizations; for example, the INSERM in France, a major research organization, calls us "association de malades", an organization of "sickies", whereas other organizations such as the INPES3, the national institute in France for health prevention and education, calls us "health organization" - "association de santé". These kinds of terms can also be extremely important in the eyes of patients, as well as concerned persons working with our type of health organization. And our third goal is to encourage research in the field of treatment for mood disorders. To reach these objectives, I assume we have the same type of activities that you have with help lines, self-help groups, website, newsletters, etc, etc.

57In 1997, France-Dépression got involved for the first time in a transnational or European effort when we co-founded an organization called GAMIAN - Global Alliance of Mental Illness Advocacy Network. Immediately after the creation of GAMIAN there was a split between the North American members of the global alliance and the European members of this global alliance. And this split up had to do with sharing responsibilities, sharing financing, where and how would we be located, etc. This happened in the very first year of creating the organization, unfortunately. Therefore, GAMIAN North America went off on its own, and GAMIAN Europe went off on its own. Some of us from the very beginning - the founding members - have always hoped that some day we could have a GAMIAN Asia and a GAMIAN Africa and then we could all come together in a GAMIAN coalition, since the Americans and the Europeans don't get along enough to work much together for now. Anyway, GAMIAN Europe has gone on in a major way, since today it represents over 78 associations in about 35 different countries, including some South African and Canadian members, so it has gone even a little bit further4.

58Another organization France-Dépression is becoming involved with now is Mental Health Europe (Santé Mentale Europe)5 which was founded a lot earlier on, after World War II in the late 1950s, and about the same time the World Federation for Mental Health was founded. Mental Health Europe has even more members, mainly professional organizations, although they have opened up to patient organizations more recently. They are an official body that can advise the European Commission; they have financing to sponsor projects and study groups in different countries such as in France, where we were able to work on a social inclusion project that was extremely interesting and culminated in a forum in the beautiful Hotel de Ville here in Paris6, with a great number of patient organizations from all over France, something that had never been done by us on our own in France.

Federations and European users' networks
GAMIAN Europe (1997)
Global Alliance of Mental Illness Advocacy Networks - Europe Federation of 78 associations of users and professionals in the mental health field located in 35 different countries.
Mental Health Europe - Santé Mentale Europe (1985) Supported a Study by user organizations in Europe "Promotion of social inclusion of people with mental health problems" Production of guidelines and a manual of best practices

59So this support from Mental Health Europe really made it possible for us to go on with our projects and, in fact, another edition of the citizen's forum, as we call it, will be taking place in February 2008 again at the Hotel de Ville nearby. I see that Martine Dutoit, the President of Advocacy France who is the lead partner for Mental Health Europe in France is here in the room, who could add any additional information in the case you're interested.

60Now, unfortunately, Mental Health Europe and the World Federation for Mental Health (WFMH) seem to have difficulty in getting along these days as well. Whereas Mental Health Europe was to be the European section of the WFMH, recent changes have occurred within the WFMH leading to a change in their structure. The change is based apparently on business concerns and on running some of our organizations as if they were actual corporations. It also has to do with the industry involvement, which is a major difficulty in the mental health field. I am amazed by the way other organizations such as AIDS prevention or AIDS organizations can get along with the industry, can actually dictate research to the industry, be a full-fledged partner, and in the field of mental health, our organizations have a lot of trouble accepting any kind of support from the industry, and in the eyes of the public our credibility would be severely jeopardized. This is a major concern in any case for mental health organizations.

61One of the ways it is possible to get around this at the European level is by creating coalitions of different industry payers so that you're not working with a single laboratory. In the event that something went wrong or if there are adverse effects of a medication or you want to make a public statement, etc., this can be defused by having an entire group of industry representatives with you. However, it does remain a problem.

62Another problem we have experienced is this question of whether you're working with a top-down or a bottom-up group. What I mean by that, is that France-Dépression is really a bottom-up type organization created by patients and certain psychiatrists and health professionals that were interested in working together in the field from the very beginning. So they moved their way up to try to become representative, whereas the French State has a tendency to create its partners on its own, what we call "interlocutors", that it can deal with and that will approve decisions it makes. And I think that France still has a problem listening to any kind of grassroots movements, unfortunately. This is one of the reasons why France-Dépression has decided to remain independent and why we have built up regional chapters and have a lot more support from public authorities, including from the Ministry of Health. The Ministry of Health, as well as the INPES I mentioned earlier, have granted us subsidies and this is because little by little we have been able to move up and represent the interests of persons suffering from mood disorders. Some organizations have the luxury of not even accepting financial support from the State, as you may know, feeling that this way they are truly independent. In that case, you need some type of major sponsor, who lives in a château!

Objectives of the European Depression Day (EDD):
Fight against stigma and promote awareness
Inform the general public, elected officials and the media
Encourage training of general practitioners
Put depression on the political agenda to draw greater attention to the impact it has on the individual, their family, society and the economy...
Involve international organizations (WHO and WMHF)

63And finally, our latest effort in the field of creating umbrella organizations and coalitions is the European Depression Association. In 2003, France-Dépression decided to get together with other depression organizations in Europe and founded the European Depression Association7 - depression meaning any type of mood disorder - with the idea of launching a European Depression Day. So in 2004, we launched the very first European Depression Day (EDD) and France-Dépression is the lead partner in France for this initiative. Things have gone very well since. The first year we organised EDD at the Hôpital Sainte Anne, our historical partner in Paris. The second year, we held a conference at the European Hospital Georges Pompidou. And the third year, last year, we held a major event at the French Senate - Palais du Luxembourg, right next door here. And this year, we will be holding our European Depression Day at the Ministry of Health, and we hope that for the very first time, the French Minister of Health herself might come and say a few words. However, I must admit that the idea of organizing a European

64Day, when we went ourselves to the Ministry and said: 'Look, this is what we're doing, we want to launch this European Depression Day movement', the idea itself made it a lot easier, because I think any State is interested in being involved in European-type activities and this has lead to a lot more encouragement for us.

65One last word about this question of "instrumentalization" or difficulties we might have. Often, I must admit we are called at the last minute, almost as an afterthought, when everything is decided, policies are made, strategies are worked on, to finally get the approval of the persons who are the most concerned, the citizens or patients, such as ourselves. And it is sometimes extremely difficult to be called into these meetings at the very last minute, when there are very few patients or carers involved. A lot of work is done by persons who are not always necessarily stable in terms of their health, and this is a real challenge for us. When you're dealing with a patient organization, trying to work as an activist, you may have problems with transport, problems with your own pathology, problems with the resources you have, just to be able to get anywhere.

66In any case, these events have been a real inspiration for me to meet colleagues all over Europe trying to do the same thing I am to improve the situation.

67I think that is the number one positive aspect, in spite of the "competition" which was a word I was quite surprised to hear earlier, although we try to avoid this word "competition", we try to say 'let's see what's in the landscape and let's all try to work together in the same direction', though it can be a little difficult.

68In terms of empowerment, in France we are still really faced with a very paternalistic system, where the basic social welfare systems are supposed to take care of you, and there is very little you have to do yourself as a patient to get better, although this is changing, the mentality as consumers is changing, and I think our associations have had something to do with that as well. Thank you.

Activism and governance in coalitions: the case of the CIANE, the French interassociative collective on childbirth

69Bernard Bel, CIANE

70The CIANE8 (Collectif Interassociatif Autour de la Naissance) is a French coalition of non-profit consumers of maternity care associations. It originated from the CISS9 (French interassociative health collective) which was founded as an informal coalition in 1996 before getting officially registered as a non-profit association in 2004. The CIANE has followed the same path: it was founded in 2003 and registered in 2007. The major incentive for these collectives to officially register as non-profit organizations is that this procedure constitutes the first step in the process of obtaining an agreement from the Ministry of Health as a patient organization or health service user organization. These organizations have to get this agreement to take part -on behalf of the patients, users or consumers they represent- in the committees and in the study groups under the administration of the Ministry of Health.

71The CISS currently gathers 25 member organizations and the CIANE 140. These figures are not significant inasmuch as some member organizations, such as La Leche League or Familles de France, are large federations whereas many other member organizations are small birth-activist groups with five to ten members working on a local scale. As the CISS and the CIANE are interassociative collectives it is difficult to estimate how many individual members both coalitions gather. Our estimate is that the CIANE represents 150,000 with perinatality directly concerned citizens (knowing that there are 850,000 births per year in France).

72The institutionalisation of the collective has been an issue of a long-lasting debate within the CISS. It is one of the main concerns of the CIANE, which is at present in a transition period.

Problems

731.To negotiate policies or to communicate with the public,bureaucrats have a tendency to prefer interacting with a limited numberof persons or groups. The first person or the first group acquiring areputation of cooperative opinion leaders are likely to remain in the sameprivileged status unless challenged by competing activists. This happensquite frequently to the CISS and they keep reminding officials that theircoalition does not represent “all patients”, which means that negotiationsshould be extended to a larger number of societies.

74In the CIANE we might indeed face the same problem in the long run. Even now, a very small number of representatives are interacting with officials under the banner of the CIANE. To a great extent, this is due to the experience and expertise they have acquired in their professional environment and/or in voluntary work for the CIANE or its affiliates. To a lesser extent, this is due to the fact that they live in Paris!

  • When leaders come to the fore, ordinary members tend to delegate all powers to them, including that of taking care of daily business in the society.
  • This problem is more acute in the CIANE than in the CISS because of the age group and social status of many birth activists. Sometimes it is hard to convince a young mother that she is capable of doing efficient work for the society, even though she may already have a professional experience and/or a high standard of formal education.

Solutions

Focusing on the empowerment of activists

75This is indeed the response to problem (3) exposed in the preceding section. Though there is no French equivalent for 'empowerment', I often quote a famous definition (and great insight) by Félix Guattari10. In his view, empowerment means a collective construction of subjectivities. This is not an oxymoron. It means that you do not get power as an individual, but from the sense of belonging to a group, although this power will remain your own regardless of the strength of the group. Empowered parents are not only the focus, the beneficiaries of perinatal care, they should also take initiatives and become actors of social change. Involving fathers and siblings in this process plays a significant role in social mobilisation11.

Using modern communication tools

76To maintain a close contact between leaders and grassroots activists, we need to facilitate a democratic sharing of information. For this, we use Internet tools (discussion lists, blogs and websites). For instance, the CIANE is registered as a standard non-profit society with a standard governing body: president, secretary, etc. (In order to avoid confusion, we discarded the option of a collegial body - of a ‘Mexican army’ of copresidents.) However, we expect the governing body to enact decisions worked out collectively by a ‘technical committee’ which is nothing but a discussion list.

77A drawback of this democratic decision-making process is that all the information transits on the CIANE discussion list, making it difficult for members to stay stick to the current topics. To compensate this, we create work groups for various topics, and each work group may create its own discussion list(s) for the time the group remains active. (Creating a discussion list is a very simple task.)

78Using a blog for the CIANE website makes it possible to publish motions based on consensus. How is this achieved? First we write a tentative statement and discuss it on the CIANE list. Then we publish it on the website, send out announcements and wait for comments on the website. After a few months, if the revised version remains stable and uncommented, we consider that it has been adopted. This type of consensus is indeed subject to revision if challenged later, when conditions have changed or new people have joined the CIANE. From this viewpoint it works similarly to (and has the same legitimacy as) consensus in medical practice.

Training

79After its registration, the CISS was granted substantial funding from the State, which contributed to its development over the whole territory and to a professionalization of its activities. Funding also made it possible to set up training programmes for citizens eager to join the governing bodies in hospitals or to sit in national/regional health committees. This training has been strongly encouraged by Health authorities in France.

80For responsible citizens, training should cover basic medical knowledge on recurrent topics, a fair knowledge of legal issues, and a 'bag of tricks' to interact on an equal stand with health professionals and bureaucrats sitting in committees.

81The CIANE will implement its own training programmes once it has sufficient funds and people to start in this direction. However these programmes should focus on medical and legal knowledge specific to the domain of perinatality, as it will be more efficient to send trainees to other institutions such as the CISS and the INSERM.

82The CIANE's specific programs will rely on material currently being gathered on the CianeWiki website.12

Encouraging roles

83At least two types of roles can be found in action group leadership:

  • Implicit roles are the ones that persons may spontaneously pick up according to their psychological and professional profiles. Thus, a lawyer will 'naturally' become a legal adviser for the society, whereas a computer engineer will take in charge Internet communication tools.
  • Formal roles are attributed by the group: secretary, spokesperson, etc.

84It is important to pay attention of the complementarity of these roles in the group and to avoid clashes between different visions instilled by actors belonging to different ‘spheres’. In the CIANE, for instance, we need to adjust and to use the full potential of several ‘cultures’, such as corporate and scientific/educational cultures, that are often opposed in society at large. In general, working in a cooperative turn of mind requires taking sufficient distance with one's own experience of leadership in a competitive society.

  • 13 Regarding roles in collectives, see D. Vercauteren, T. Mûller & O. Crabbé, Micropolitiques des gro (...)

85A swapping of roles may also prove successful on the long term. For instance, there is an evident risk in relying on a single person for the management of Internet tools. When starting the CianeWiki website I delegated the installation and setup to another engineer and we used popular software that many technicians will be able to maintain. Another type of delegation occurred when the CIANE was first registered: we insisted on having ‘younger’ people on the governing body, thereby excluding pioneers — except for the president. In this way we promoted a new dynamics in the coalition.13

Developing authoritative sources of information

86The AFAR14, a member organization of the CIANE, created a shared database of scientific publications on perinatality.15 This database is operated in a cooperative manner and it is publicly accessible. It is currently used by parents, journalists, student midwives, etc., and the expert members of study groups. Recently a study group of the HASrequested us to extract an index of EBM literature relating to ‘physiological birth’.

87This first ‘activist’ use of our database occurred in 2004 after AFAR's campaign on episiotomy. The CIANE filed a request for a study group along with the National health insurance (CNAM) and the National College of Gynaecologists-Obstetricians (CNGOF), and it provided more than 100 scientific articles in support to the suppression of ‘preventive’ episiotomy. At the end of 2005, recommendations for fair practice were published -though in the meantime this project had been 'hijacked' by CNGOF for bureaucratic reasons.

88More recently, the CIANE has been involved in four study groups of the HAS:16

  • Antenatal screening for Down's syndrome (over);
  • Fundal pressure17 (over);
  • Induction of labour (pending);
  • The follow-up of normal pregnancy (pending).

89We consider that the first three ones are full success stories. The new recommendations on antenatal screening and fundal pressure are exemplary, and the ones that the induction group are currently writing down are of great quality. The last group is a total failure, because of a poor management and the unwillingness of many participants to revise the fundamental beliefs on which French obstetrical practice has been stuck for decades. The CIANE decided to suspend its participation in the study group.

Offering cooperative tools for the coordination of groups

90CianeWiki is a new undertaking of the CIANE. It aims at developing a common Internet space for all its affiliates, taking advantage of Wiki technology. The approach is similar to those of Wikipedia and Ekopedia with the notable difference that most pages are not created by anonymous people, but by identified groups belonging to the CIANE or agreeing with its goals and the site's guidelines.

The example of EGN 2006 and the CIANE's political agenda

91During their 2003 closing session, EGN18 organisers suggested that the next États généraux be managed by consumers. EGN 2006 have been constructed on a cooperative approach: call for proposals of thematic workshops in which medical specialists and customers would contribute on an equal stand. Each workshop was documented months in advance and it had its own forum on the website.19 Workshops have been recorded and their full transcriptions are available on the website. Once the event was over we opened a public-archive discussion list20 in which participants and supporters could extend discussions and evaluate the workshops. From October to December 2006 the EGN list worked in collaboration with the CIANE discussion list to elaborate a political agenda.21 The political agenda received official support from several professional groups. This year, the political agenda has been submitted to politicians contesting elections.

DISCUSSIONS: A SYNTHESIS

Summary of the discussion, group 1

92by Angela Marques Filipe

93The three main questions for discussion were summarized as follows: what makes it possible that heterogeneous coalitions speak with one voice?; for what purposes are coalitions considered relevant and valuable in the domain of medicine and health?; how not to drown in bureaucracy and renew activism?

Coalescence process: a great diversity of forms and causes

94The discussion started from the idea that putting together different actors concerned by similar issues has to do with the particular history of an organization and diverse trajectories, representing the presence or absence of relevance and value in the purpose of coalescing. Ultimately, the “coalescence process” may have a wide range of stages or forms including occasional cooperation (a sort of zero degree), where some sort of meeting or gathering for exchange of advice are the only forms of engagement regarded as viable:

«We don't have cooperation. (...) It seems we'll be able to get advice from other associations, but in reality, there is no cooperation. What we do is that once a year, we have a sort of congress with invited specialists on artificial fertility» [Turner's Syndrome PO representative].

95Apparently, the creation of coalitions may have to do with the implications of diseases or conditions defined as genetic. Pos centered on affecting different aspects of health and, conversely, conditions with different or unknown causes but displaying common symptoms. The latter was the case reported in the work of a PO on sudden infant death:

«[the PO representatives] had difficulties in interesting public authorities and their strategy was to say: 'We don't know the causes of this pathology. There can be many different causes.' What they were trying to do was just to participate in other actions promoted either by professionals or by other patient organizations and to give their help in order to go further, (...) to help on this problem and try to find solutions, either in terms of treatments or in terms of diagnosis.»

On independence and cooperation within coalitions

96After this initial topic, there was some debate around the possibilities of manipulation of and control over a coalition by the involvement and funding of the industry and the ensuing bounding of activism. In this example, the coalition had an ambiguous attitude and went along with the manipulation while allowing its members to face and oppose the industry:

«It had more to do with the power of the manipulator than the power of the coalition. (.) The problem with the coalition was they were able to take hold - without us noticing- whereas at a local level, it might have been noticed. But equally, I think that we sorted that out because of the coalition. A small group couldn't do it on its own. We need the power of the group to work for the good, but it's easier for somebody to hide in a group. I think some of the umbrella organizations in Europe were set up to manipulate. I don't think they're more vulnerable, I think they were set up to manipulate. But I think that it's only a coalition that can correct that. But it has to be an honest coalition. So, it's back to the trust.»

97Following these statements and in response to questions raised during the session, it became visible that a major goal of a coalition is to strengthen a POs collective cause and sustain the specific work of each of the POs involved:

«this is an umbrella organization for five patient organizations [around eye/vision problems or conditions]. Each organization is quite autonomous and we work together for subjects we share, so there are no problems at all, I think. Together, we have more strength than each organization separately. (.) And the mother organization, the umbrella, is entirely funded by funds [coming from] charities, not from pharmaceutical companies.»

98This primary purpose could be generally defined by an idea of cooperation, as opposed to competition, in the health domain and particularly in the broad universe of patient/user organizations, although in practice it is associated with different meanings. In one case, cooperation could mean exchanging information among countries looking for solutions, as in the case of fibromyalgia, in order to «progress, to go further, to accomplish the recognition of the disease», the latter being the common ground for activism. In other cases, there may be a common ground and coalition, around childbirth for instance, even if the causes and goals differ. Here, cooperation is grounded on «a kind of platform of propositions which are a bit transversal and, are based upon some kind of general principles, shared by all member groups.»

One coalition, one voice

99These different meanings or goals attributed to cooperation raised again the question on how to act as a coalition and how this may vary according to the constituency's aims, positions, and interlocutors. This was clearly stated by a rare diseases' PO:

«It might not always be necessary to speak with one voice. Yes, of course, it's better in certain cases, but on certain subjects. It's normal and good to have umbrella organizations and to say, among the members, that there are different opinions about diseases, etc. But, of course, on a lot of other subjects, it is better to have one position because if we have certain goals and targets and we want to change something, it's better to say the same thing. And if we share enough points of view, enough information, etc, the process of producing opposition is the main point necessary to be sure everybody has the same position. And when it's not possible, ok, it's not possible. Especially with public authorities, in some cases, because they think it would be better for them to have one organization, one position, one relation and to push the organization. (.) But even in patient organizations, we are a society and in a society it is normal to have some different points of view.»

A coalition is not the addition of organizations, it's something really different

100The debate moved into the question of “why and how to develop a coalition”, and again diversity emerged as a key issue. On the one side there could be an organizational drift from grassroots mobilization into a coalition, constituting a bottom-up movement, as in the Huntington's disease case:

«They grew more organically. There was an American organization that met with the Dutch and the Canadian and then they grew out of that but it didn't feel like an umbrella, it felt like you were being nurtured by another group.»

101On the other side there may be a top-down movement. It may start from the international level - as in the Portuguese case:

«Some of the associations were created because people got in touch with international organizations, platforms and federations and then they got the support to create the organization.»

102Or start at the national level, as was the case of organizations related to childbirth in France:

«[The collective] was created under the pressure of the outside and due to the fact that some people had some experience in this field. So, it was created and then other patient organizations joined it.»

103In this case, tendential benefit/resource-sharing could also be present:

«Some of the most useful coalitions I have been part of didn't really have a voice. (.) They were just there for their practical purpose. So we had shared off a space - and that can be crucial to a small organization -for they just needed to share a photocopier or even secretarial services», or because there is a «difficulty of POs managing two kinds of tasks. (.) In each small organization, there are a few people who are at the heart of the organization, then there are other people who are - in it - as in a service relationship. [So this coalition] plays this role of putting different kinds of skills together and trying to help people to have resources in order to play their role as individual representatives in various commissions and committees. [Hence] I would say that a coalition is not the addition of organizations, it's something really different.»

104A point should be stressed on the coalition's own limits, in the sense that they are not a mere sum of organizations, although they respond to specific goals or targets, not constituting a target by themselves:

«I think that tension can arise linked to the fact that there is some ambiguity or misunderstanding on the question of size. (...) You just look and think: 'it's on the top and it's supposed to include all the rest, so it's supposed to be really big.' But, in fact, it is something which is rather small, because people involved in these coalitions are not a very large number.

There are links, I would say 'like a network', rather than something like that, even if the word 'coalition' or 'alliance' suggests a sort of big thing. (.) So, I think that it's important, even for political reasons, not to forget the message from the public authorities that coalitions should not be considered as the only interlocutor. They should be considered as small groups with specific targets and not have the pretension to cover all the problems and all the issues to represent everybody.»

On representativeness, activism and professionalization

105That set of issues was connected with the topic of bureaucracy versus representation, on one side, and voluntarism versus professionalism, on the other, a pair of questions previously summarized as "how not to drown in bureaucracy and renew activism". One example of these dilemmas is that of the movement for user control organizations in the UK:

«You have small organizations and then larger ones. And that is a problem for some people who use services, some patients, who feel some of the large organizations aren't representative and, in fact, those organizations aren't actually even run by people who have experiences of the condition. Under user control, organizations are run by the people with the conditions and not just by helpful people who don't have the condition. (.) Because they say that the sharpness of the views is diluted in large organizations, partly because of the bureaucracy, since when you get over a certain size, there is a tendency for an organization to be self-serving up to a point.»

106A final, though extended, part of the discussion developed around challenging views presented by some PO representatives on the issue of bureaucracy versus activism. Bureaucracy is not the opposite of efficiency. It is rather related to a certain degree of professionalization:

«I know very dynamic umbrella organizations with professionals which are very important in the organization. Then, it's not always linked. (.) Of course if we want to be efficient, professionals need to be very present in the organization. But it's not because they are very present that patients are not present and that these professionals are not able also to give voice to the patients. From my different experiences, I don't see where the problem is».

107The very opposition between patient/activist and doctor/professional should be reconsidered:

«It's a pity there's so much emphasis on the fact that patient groups don't get on because, in my experience, researchers and doctors don't get on either but we don't dwell on it. And it almost reinforces the notion that patients are moody and doctors are professional. Whereas, I think that over the year, that I was part of a lay organization, we had come from the grass roots, were genuine volunteers to start with, but we were extremely professional about everything we did though we weren't professionals.»

108Another challenge raised by these statements had to do with the complexity inherent to coalitions or umbrella organizations, as it was often called, implying that some traditional categories are blurred even as means for the tasks assumed at a certain organizational level, as stated by one rare diseases' PO:

«In umbrella organizations, it's also much more complex, because sometimes professionals from field organizations are involved in umbrella organizations, but here, and in fact, they work as volunteers. (...). Then, the difference between volunteers and professionals is not so easily made. And very often, when we work or speak with public authorities, for instance, they ask: 'and you, are you a patient or a professional?' because they are not really able to see the difference (.) In umbrella organizations, it's not the same level of work as in our organization, which is always working with patients and directly with members who are all concerned. Because in umbrella organizations, we are involved in a second level of work (.) and when you work on policies and more theoretical things there is no preference, so both can be done.»

Summary of the discussion, group 2

109by Vololona Rabeharisoa

110The session began with a discussion about the issue of involving professionals in patient or user organizations. It was pointed out that the stakes were different for patients than they were for professionals. One participant argued that for professionals, being involved in a patient or user organization might help them move ahead for “their own glory. Besides, professionals can inhibit discussion: patients might be reluctant to speak in their own name about personal problems in front of “aliens”. Mixing professionals and patients might also blur the identity of the organization for its patient members. Often, when an organization has professional members, patients do not want to speak on behalf of the organization. This is why some organizations avoid to have professionals sitting on their boards: “We are a lay organization representing lay people. Full stop.” Apart from problems of identification and representation, one participant explained that although patients and professionals might have common interests, theses are not “natural common interests, but rather “given common interests” This implies that reaching a compromise with professionals is a risky business for patients: it can sometimes dilute the strength of patients' views.

111Drawing on these preliminary thoughts, the discussion moved on a series of issues related to the heterogeneity of membership within coalitions, the multiplicity of forms of coalitions, their value-added and side effects.

Value-added of coalitions: “You can do it yourself, but you better do it together”

112Apart from having professional and patient members, some coalitions also have people who are not patients. Membership may be even more heterogeneous: some coalitions have individual members (for instance individual experts on various issues - medical, psychological, legal, etc. -), along with member organizations, be they patient-based or not. Some coalitions are national, whereas others are pan-European. Plus, coalitions may themselves coalesce with one another.

113Heterogeneity of membership and multiplicity of forms of coalitions translate the various raisons d'etre of coalitions, whose value-added depend on the nature and the scope of the issues they intend to put forward, as well as the political means and actions they want to mobilize and develop. Forms of (national) coalitions also vary from one country to another: institutional landscape does matter for shaping coalitions. Various configurations emerged throughout the discussion.

114One participant explained that although her organization does not belong to a coalition, it sometimes gathers with other groups to address one particular issue. Usually, such an issue is considered as the “lowest common denominator. Each organization has its own say, and adds its voice to amplify pressure. Large pan-European umbrella organizations sometimes do similar work:

“There is an organization called ENCO, the European Network of Childbirth Organizations. This is a coalition of as many childbirth organizations that wish to join, and this is pan-European. ENCO has breastfeeding organizations, it has some midwife organizations, it has campaigning groups in different countries, which can put their views forward. ENCO has had some successes where, for example, in Germany, the German obstetricians were trying to bring in a law to ban homebirth. The message went out on the web to all ENCO members that they should write to the Ministry of Health in Germany, and point out the stupidity of this idea, which they did. And [the law] was withdrawn.”

115Coalitions may also gather numerous small organizations which act locally, with an aim at bringing shared issues at national level:

“Why did we find a need for a coalition? First, because especially in France, pregnancy, childbirth, the first period of life, are really seen as medical events. This is becoming very heavy for everybody. So, there are people who would like to get back to more simplicity. There are small groups working at local level, and which sometimes interact with maternity hospitals. But those groups are usually very small, and they act only locally. To build something at national level, to be able to talk to political partners, one needs a bit more of strength. So we decided to put all these groups together around a common guideline that each had agreed upon. Each organization is free to develop its own action, but as a member of the coalition, it joins on the basis of the guideline.”

116This principle of speaking in one's name/doing it oneself, while speaking from a common standpoint/acting together, also applies when various coalitions decide to join on one particular issue:

“It has happened that to achieve our work, we [Health Action International] have associated into larger coalitions, for instance with Medicines in Europe Forum, back in 2002, to fight over the European relaxation of a ban on direct to consumer advertising. What we have found from this association of coalitions is in fact that it is the key to achieve the striking balance between being able to speak in our own name when we feel it is appropriate, and at the same time, to have a common standpoint when there is an urge to be stronger". Another participant argued along the same line: "We advice them [our member organizations] on common notions towards policy and on the need for it. If nine disability organizations speak up on one issue, they are much more heard and much more respected than if it is only one.”

Difficulties and side effects: The risk of “polderization”

117Although participants recognized that coalitions are much needed to amplify pressure on the medical professionals and political authorities, they were aware that moving together on common issues while leaving room for individual voices and initiatives, is not an easy task.

118First, issues matter. It was remarked that it is easier to unite around certain issues than others. The problem of stigma, for instance, is easy to unite around, but medication (drugs versus talking treatments for mental illnesses for instance) is a more divisive area. So is the issue of working with the industry. One participant also pointed out that within pan-European coalitions, national member organizations might have different stakes as regards a common issue:

“I have seen conflicts with Eastern European organizations joining coalitions of previously Western European organizations. [Eastern European organizations] may have a lot of more basic stakes to deal with than we have in Western Europe. Somehow, we are lucky enough to have tackled these stakes in the past.”

119What is shared, and what is not, always need to be elaborated on. Consequently, agreements reached within coalitions can be temporary:

“You might be associated with organizations that, on a specific point, stand together with you, but tomorrow, they might just say something that goes totally against what your principles are. So, it is a bit of a double-edged sword.”

120This participant went on stressing the fact that:

“It is not only that you need to be careful to who you decide not to associate with, but also to who you should decide to associate with on a particular issue.”

121Second, working within a coalition may come with a danger of "polderization", a Dutch word for dilution and loss of strength in campaigning when groups mixed up together. By gathering, each one comes to see the others in a different way. This is the positive part of coalitions. The negative part is that each organization member may end up forgetting its own activism. Learning about the others' stakes, negotiating common interests, may bring about a dilution of one's own arguments:

“For a few years now, a group of researchers has been looking at the state of patient organizations in the Netherlands. They have noticed that patient organizations tend to be a "polder", a Dutch word designating a land gained on the sea. This has been a positive word for years, to say that people discuss together and come up with agreements. But then, the word has turned up to be a negative one. It has become a verb to say that people mix together in such a way that they don't stand for their own cause anymore. They spend too much energy discussing with each other that they eventually forget their own activism.”

122Participants agreed upon the fact that a strategic balance is needed between working in and individual organization and working within coalitions.

123This issue brought about discussion on the governance of coalitions. The basic question was: how to manage the multiplicity of voices and interests on a variety of issues, some being highly controversial whereas others being more consensual? Flexibility, reactivity, sharing of tasks and competences, were put forward. A few concrete examples were provided on how to preserve a democratic functioning within coalitions:

“We have a discussion list on internet with one or two representatives of each association. We exchange our views, and each representative, in principle, talks with his/her own organization. And we are also a bit relaxed. We send propositions and give people a couple of days to react. After, let's say, one week, if people do not react, we consider that they agree upon the proposition, because we can't ask more than 100 organizations to respond to any single subject. So far, is has worked quite well.”

“In the 80's, the big thing was being a network, being flexible, being able to reply fast, being integrated and still democratic. But we found that to apply for working relations with the WHO for instance, we had had to readjust our constitution. Now, Health Action International has a global board, and sets up a global working plan. But each office is and independent structure: it defines its own working plan over a course of 4 years. There's a coordination officer for each region, which has its own board and reports to the global board.”

“We are a coalition of patient organizations in the South of Belgium. We started in the 90's. We thought that the best way to do it was to set up a federation of existing patient groups. Belgium is a small country, so it was not that difficult to do it. The only thing that you have to bear in mind is to have a French part and a Flemish part. Belgium also has a peculiarity. We have 6 Ministers of Health, at national and regional levels. So we need to be able to talk at different levels. We always consult all organizations, mostly byemail. At the moment for instance, we do not have a Ministry of Health at national level, because of election struggles. Provided this circumstance, we are drafting a document to express patients' needs. We will send this document to all our member organizations. And then, we will gather people who have the energy to work on this and help us improve the draft.”

124In any case, the question of availability of individuals who are willing to spend time and put efforts into collective tasks is seen as a critical issue:

“We work with people who have difficulties themselves. You can't ask a patient organization to react in one week. Sometimes, you need one year. And you have to work with that.”

“What we have found in our own experience is that when working in a coalition, the different partners bring about their different expertise. Then, it's up to the division of tasks, and this is perhaps the most difficult part of being in a coalition. It's when it cuts to the chase and you need to split the work. Because inevitably, very often, it happens that it falls up upon the shoulders of the same people over and over again: those who draft the statement. Of course, afterwards, everybody answers back and gives comments, but those who draft are very often the same people all over again”.

Bureaucracy: A threat from the outside rather than from the inside

125This issue of resources and time put into the working of a coalition brought about the question of bureaucratization. Actually, all participants agreed upon the fact that there is no risk of bureaucracy per se; the problem is rather that running and working in coalitions are time consuming:

“For instance, when we draft something, it then goes back and forth to our members, and that might take two or three weeks more than what is expected.”

126Participants also agreed upon the fact that bureaucratization is less a risk stemming from the inside of a coalition, than a danger coming from the outside. This is mainly due to the fact that coalitions do not only develop because individual organizations are willing to be heard at national and European levels; coalitions also develop because national and European officials, which are now strongly led to consult patient organizations, are at better ease talking with a few representatives of the "patients' world". Coalitions are therefore those who are consulted, rather than individual organizations:

“We are a coalition of patient organizations in the South of Belgium. We started in the 90's, when everybody, all the professionals, were talking about the patient who has to be central in the system. And there were meetings, and everybody was there, except the patients themselves! And then, they said: 'We have to invite someone who can speak in the name of the patients'. So, patient organizations thought it was time to have somebody speaking in their name. And we thought that the best way to do it was to create a federation.”

127This comes up with a burden for coalitions: they are more or less caught into the constraints imposed by the whole bureaucracy of consultation:

“Can I come back to the issue of bureaucracy? What I mean is not bureaucracy within the coalition. I mean bureaucracy that constantly demands information, advice, and response. The Ministry of Health, drug companies... they send you an email saying: 'We'd like you to comment on this document'. So now, your organization has to print if off. As a point of principle, I always write back saying: 'No, send me the document, and then we'll consider whether we will comment on it or not'. And then of course, the organization has to discuss it. And we don't have enough time to do this properly, to collect comments from everyone. So now, we wait until it's published and then we'll sink our teeth into it. The bureaucracy is the system. How would you define the difference between participation and bureaucracy?”

The need for training: acquiring skills, mutual learning, and the making of common concerns

128In the second part of the workshop, the discussion moved on an issue that all participants saw as crucial: the need for training in order to be able to work in an organization/coalition. There was much discussion about building skills necessary to have effective participation, as well as about training as a means for creating solidarity and a sense of community. Training is not necessarily provided in a formal way. It is provided by quite a few organizations/coalitions at different levels.

129First, there is training for acquiring generic skills: to learn listening to others; to learn how to work within a group; to learn how to lead projects; to learn speaking in public and defending your views; etc. A particular focus was made on media skills: how to avoid being stuck into the position of "story-tellers"? How to avoid being manipulated? How to draw journalists' attention on the complexity of issues? There was a lively discussion about this. Some participants had lost trust in the media and were very negative about it. Some felt that a lot more could be achieved if groups had training in how to handle and speak to the media. It was suggested that as well as training in how to talk to the media, groups and coalitions should offer training for journalists in how to talk to and report on patient organizations. Maggie Mort, former journalist and now sociologist, suggested getting in touch with colleagues of journalism, and offer sessions on patient organizations issues as part of their professional education.

130Second, there is training for teaching new members the stakes, the modes of functioning, past achievements of the organization/coalition. Here, training is intended to provide all members the same level of knowledge and awareness:

“It's rather difficult for new members to join because there are many different issues going on and people don't have the background, they don't have the expertise. We realized that this was not good because there were people who stepped out. It was too much for them. So, we will probably implement a kind of guide for newcomers in our discussion list, and we are going to start making a little weekly digest that we will put on the wiki, so everybody can read it in order to keep up.”

131Third, there is training for teaching members to make the interface between the coalition and the medical and political world.

132Apart from teaching members, two additional conceptions of training emerged throughout the discussion. Training was depicted as the everyday mutual learning between members. This was seen as much important in coalitions concerned with issues whose formulation may greatly vary according to national contexts. Mutual learning is also considered very important in coalitions for sharing practices, and learning member organizations' forms of activism:

“We compare experiences. We compare the current status of the legislation in our countries, treatment methods, and patients' rights. For example, for our European Depression Campaign this year, we used the idea that came from Aware against Depression in Ireland. We've known them for many years now. They have a Daisy Day with bulbs for flowers, and they use the little cardboard part on the package of bulbs to explain what the organization is, and campaigning against depression. So I think that there are ways of sharing practices like that.”

“A couple of years ago, in a newspaper, there was a patient organization complaining that all attention goes to HIV/AIDS problems, and that they get so much money and so much attention, etc. A few days later, there was a reaction, probably from HIV/AIDS groups, saying: 'Maybe you can learn something from us on how we deal with the pharmaceutical industry, and how we get attention and raise awareness'. And I thought it was very important for us. It is coalition in terms of: 'How can you learn from the activism of other groups? ”

133Training also meant, at least for certain participants, the everyday learning of what individuals have in common and share together:

“When we first put people together, everybody came with things like: 'What can come out of this for me? What is my interest?' So everybody spoke about his/her own problems. After some time, people started saying: 'Well, in fact, you have the same problem than we have', but it took time to have this feeling. So we are trying to organize training for patient organizations because it is really important for them to take the place that they need to take, and also to work on a plan in solidarity.”

“I think we are also confronted to training because it was really striking in the beginning, patients arrived at meetings and they thought that their own experience was valuable to everyone. So we had to teach them to discover that they were sharing common experience, but that they were also individuals. So we have training twice a year, to learn them to think and to speak for the coalition and not only for themselves.”

Notes

1 Membership of Medicines in Europe Forum in June 2007 http://www.prescrire.org/cahiers/mentionCollectif.html

2 http://www.france-depression.org

3 National Institute for Health Prevention and Education (Institut national de prévention et d'éducation pour la santé) http://www.inpes.sante.fr/

4 http://www.gamian.eu

5 http://www.mhe-sme.org

6 European interassociative forum for a citizen's policy in mental health (forum interassociatif européen pour une politique citoyenne en santé mentale), organized by Advocacy France, an association of users in mental health.

7 http://www.eddas.org

8 http://ciane.info

9 Collectif Interassociatif Sur la Santé http://www.leciss.org/

10 http://en.wikipedia.org/wiki/Félix_Guattari

11 See my paper mailto:liste-naissance@yahoogroupes.fr — the birth of a virtual community (2002). http://wiki.naissance.asso.fr/index.php?pagename=VirtualCommunity2002

12 http://wiki.naissance.asso.fr

13 Regarding roles in collectives, see D. Vercauteren, T. Mûller & O. Crabbé, Micropolitiques des groupes - pour une écologie des pratiques collectives. Forcalquier: HB Éditions, 2007, p. 167-178.

14 Alliance Francophone pour l'Accouchement Respecté (French-speaking Alliance for
Respected Childbirth) http://afar.info

15 http://wiki.naissance.asso.fr/index.php?pagename=RechercheBibliographique

16 The Haute Autorité de Santé (French National Authority for Health). http://www.has-sante.fr. Regarding the HAS and patient organisations, read Etienne Caniard's contribution to this conference.

17 Fundal pressure is the application of external force to the uterus in an attempt to shorten the duration of labour.

18 États généraux de la naissance. http://portail.naissance.asso.fr/etats-gen/

19 http://wiki.naissance.asso.fr/index.php?pagename=EGN2006

20 http://fr.groups.yahoo.com/group/egn2006/messages

21 http://www.ciane.info/article-4823254.html

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