Capacity Building

INNOVIA is planning a series of regional workshops designed to show how bridges between researchers and patient organisations can be built and what they can offer to both sides. Because of major differences in research competences, in the scope and functioning of patient and other health-related community groups, and in the meanings attached to ‘empowerment’ these workshops will differ in their structures and organisation.

The first took place in October 2005, in the Netherlands. A report on the workshop appears below. There are plans for second and third workshops to take place in Latin America and in the Scandinavian/Baltic region of Europe. These are being planned together with INNOVIA researchers in the respective regions and with other organisations.

European workshop- Report

INNOVIA/EUROPEAN PATIENT FORUM

WORKING EFFECTIVELY WITH RESEARCHERS
October 27-28, 2005, The Hague, the Netherlands

Introduction
The Netherlands, like some other European countries, has a large number of patient and (in the field of mental health) client organizations: possibly as many as 300. They are very diverse in size, activities, and in the ways in which they represent the interests of their members[1]. Many are affiliated to one or other umbrella organisation, such as the Netherlands Patient/Consumer Federation (NPCF) or the Chronisch Zieken en Gehandicaptenraad (CG-Raad). Some, but probably not many, have well-established links with biomedical and (rather less) with social science researchers. The patient movement is not as yet wholly convinced of the value of research other than biomedical research. Research aimed at finding an effective therapy is one thing, but why should patients fill in questionnaires or spend hours being interviewed about very personal and perhaps painful matters? When chronically sick people and people with disabilities are struggling with problems of daily living, struggling for the right to participate equally in society and against discrimination, research may seem an irrelevant luxury. Telling stories, exchanging experiences and information…of course that is necessary and valuable. But that takes place via association meetings, newsletters, and internet groups. There is a widespread feeling that patient organizations have rarely profited from the innumerable studies in which their members have participated as research subjects. On the other hand a number of research-funding organizations in the Netherlands, most particularly the national research council for health research, ZONMw, have made a major commitment to involving patient and health care consumer representatives in the planning of research. In the Netherlands, in Britain where INVOLVE plays a central role, and in France, links between patients and their organizations on the one hand, and the world of research on the other, are slowly being built. Today there is plenty of evidence with which to show that, by virtue of their experience of living with illness or disability, patients can and do contribute significantly to research. Not all researchers understand or are aware of this, or have succeeded in finding appropriate ways of associating patients with their work.

That research can benefit individual patients hardly needs to be said, at a time at which so much is expected of biomedicine. That it can also be useful in a less direct manner is only gradually coming to be accepted. Yet research can provide an important input to the work of patient associations struggling, on behalf of their constituencies, for better care, for more effective treatments, or for the right to equal participation in society. Individual stories, as told by patients themselves, are an important resource in the mobilizing and campaigning work of patient associations. The UK-based project DIPEx (data base of individual patient experience project)[2] surveyed associations representing a wide variety of conditions in the UK regarding their use of patients’ stories[3]. 65% of the 309 associations that responded said that they use patients’ stories in some or other ways. They did so for a whole range of reasons, ranging from attracting media attention to encouraging others to help change professional behaviour or structures. Personal experiences are an important political resource.

In October 2005, with support from ZONMw, INNOVIA[4], in collaboration with the European Patient Forum, organised a workshop designed to introduce European patient organizations to the possibilities of researcher-patient (organisation) collaboration. Among the speakers were researchers who had long experience of collaboration, patients and patient organisation-representatives (some of whom were also (co)researchers) and people drawn from organizations with the task of bringing the two worlds together. Their talks and presentations, summarized here, show something of what is possible: of the mutual benefits of collaboration – and of the things that stand in the way. There is now a good deal of experience in bridge-building in parts of Europe, but few attempts have been made at disseminating experiences between countries, or at facilitating bridge-building in parts of Europe where such initiatives have scarcely taken place. INNOVIA sees this as one of its principal tasks, in Europe and beyond, and this workshop is the first of what we hope will be a series, organised regionally.

Summary of the contributions

Sarah Buckland INVOLVE, What it is and how it works

The systematic involvement of patients/consumers in the British National Health Service (NHS) research programme dates from 1996, when the NHS Director of Research & Development (R&D) established a Standing Advisory Group on Consumer Involvement in the NHS R&D Programme. INVOLVE is funded by the Department of Heath in England and aims to promote the active involvement of the public in the NHS, public health and social care research.
“The public” includes patients and potential patients, informal (unpaid) carers, people who use health and social services, organizations representing the interests of such users, and potential recipients of health promotion and public health programmes. “Active involvement” refers to research done with or by the public, rather than to, about or for the public.

For achieving this, INVOLVE is committed to raising awareness and providing guidance on public involvement, together with the sharing of knowledge and experiences of such collaboration in research. INVOLVE believes that the public’s participation in research can improve the quality of research by helping to ensure that it is relevant, appropriate, and acceptable to those who use health and social care services. INVOLVE produces reports and papers, commissions research, and organises conferences. Its website (www.invo.org.uk) is a valuable resource containing a great deal of information on INVOLVE and its work

Vololona Rabeharisoa and Bernard Barataud Articulating and circulating narratives on patients groups: what contribution from social sciences?
-Discussion with M. Barataud

Vololona Rabeharisoa first presented the research on and with the French Muscular Dystrophy Association (AFM) that she and her colleague Michel Callon conducted over a number of years. The AFM (Association Française contre les Myopathies) is an association of people suffering from neuro-muscular disorders (myopathies) and their families. Today it is also a major source of financial support for research, with its own laboratory, the Généthon. Thanks to the huge amounts of money which the AFM raises through the Téléthon[5], the organisation can exercise substantial influence on research. In its support for research (it has many other supportive activities, including a periodical, Vaincre les Myopathies) the AFM has devoted itself principally to biomedical (including genetic and ‘post gene’ ) research. It has a scientific advisory committee with a very eminent membership. It was thanks to these eminent scientists that the AFM was able to develop contacts with major laboratories around the world. For the scientists, the AFM was in essence a fund in aid of research. The scientists, through the scientific advisory committee, were best placed to decide which lines of research should be supported. The organisation’s leadership, however, didn’t see it as a fund in aid of research, but as an organisation devoted to combatting the diseases. The AFM leadership then reclaimed authority, turning the scientific advisory committee into precisely an advisory committee, and negotiating a ‘partnership’ with the State. Achieving all this was a remarkable feat, requiring a leadership willing to face conflict both with eminent scientists and with politicians. It also involved a number of steps. We can think of them as ‘blurring of boundaries’ and the ‘replacement of familiar distinctions by new ones’. The boundaries between ‘science’ – the realm in which scientists claimed authority – and ‘non-science’ were blurred. The AFM hired scientific experts who would not be doing research but who could engage with the scientists as peers. They multiplied the forums at which ideas and experiences were exchanged (eg through colloquia, visits to leading laboratories around the world).

M. Bernard Barataud was President of AFM during this time. In a personal, and very moving talk, Bernard Barataud explained what having had a child diagnosed with Muscular Dystrophy had meant to him and his family. His response to so shattering a blow, together with other parents, was to turn the AFM into a leading player in the search for a cure.

Bram van der Ende The DED: The Digital experience dossier. Working effectively with researchers.

Bram van der Ende demonstrated the Digital Experience Dossier (DED). This is an internet-based system aiming at the collection of daily experiences from people in the Netherlands suffering from chronic diseases or disabilities[6]. It is meant for building a bridge between patient organizations and researchers, as well as to enable greater interaction among patients groups and individuals and between patients and health professionals and service providers. Such interaction and sharing of experiences and knowledge is intended to empower patients both at the individual and at the collective levels. Whilst the DED should be an invaluable research resource, since the material is gathered on a daily basis by patients, it is a resource that belongs to the patients themselves. This is clearly quite different from a situation in which data are collected by researchers and to which patient organizations might ask for access. Providing unique aggregate data on people’s needs and experiences, a major goal of DED is to facilitate patient/user organizations’ effective influence in health policy making. Of course the system is available for scientific research and in the pilot period the Leiden University Medical Centre is already making use of it. Using the innovative infrastructure researchers can – with payment and under the conditions of TNO[7] and the patient organisations concerned – conduct their own research projects.

Currently, the DED has finished a pilot study designed to test its efficacy and relevance. 230 people are keeping a dossier and 12 organizations are involved in the research. Diginotar, a hacker proof program, ensures the privacy and safety of the digitally-stored records.

Maarten de Wit
Research partners and their support by patient organizations: some reflections.
What kind of participation do we want? In search of patient research partners and institutes.

Even though patients’ participation in research is much discussed and frequently recommended in theory, there are major obstacles to achieving appropriate involvement of patients as research partners. Major obstacles include 1. Insufficient funds are allocated for such kind of research, 2. There are very few publications or other mechanisms for sharing experiences or examples of patients as effective research partners, and 3. Researchers remain sceptical regarding the usefulness, relevance and practicality of involving patients as research partners.

The starting point for any collaboration must be acknowledgement, by researchers, of the relevance of patients’ knowledge and experience in the search for improved interventions, support, and social integration. There must be a sincere willingness actively to engage patients in the research process. It follows that researchers looking to involve patients in their work must find ways of overcoming obstacles that potential patient-collaborators may face. These obstacles may range from (potential) lack of research skills and experience to special needs in areas such as mobility and transport or communication (eg sign language interpreters for Deaf people, special computers for blind people).

To be effective involvement must be built into the research design from the start. Careful consideration has to be given to the kind of participation desired (planning the research? Conducting it? Disseminating and applying it?); to the competencies patients need in order to participate in research (open-mindedness; the ability to reflect on personal experience…); to the prior training that needs to be provided (to patients, but also to the researchers); and to the support and facilities needed (for example, the need for office space for the patient-researcher in addition to transport, communication aids).

Maarten de Wit summed up patients’ demands for collaborative research with the well-known phrase: “Nothing about us, without us”.

Pam Richards
Patients and professionals as Research partners: Challenges, practicalities and benefits.

In the UK patients’ involvement is strongly recommended by the UK Department of Health, by INVOLVE, and by research-funders. The daily experience and the impact of living with a chronic conditions give a valuable input to research by contributing with information, knowledge, and experience that researchers may miss or may lack. Pam Richards’ talk was based on her experience as a ‘patient research partner’ participating together with professional researchers in rheumatology projects.

Experience has shown that when involving patients as research partners several challenges and important practicalities need to be addressed. They include patients’ confrontation with unfamiliar terminology; patients’ belief that they themselves have nothing to contribute; and the blurring of boundaries between the patient- versus partner- role in relation with clinicians. The latter can be overcome by discussing openly when each role is appropriate (e.g. at the clinic: patient and clinician, in the meetings: partner and colleague). It is just as difficult for the clinician to switch roles in this as it is for the patient. In this sense, it is paramount to define the stage of research when patients are going to participate as research partners, as for instance: When topics are identified, when topics are prioritised, when designing the research, when managing the research, when undertaking the research, when analysing and interpreting the data, when disseminating the results, and when evaluating the research, so the previous challenges can be effectively tackled.

For an authentic involvement of patients a number practical issues must be addressed. These can be summarised as FIRST: Facilitate the contribution and inclusion of patients, Identify projects, patients and their role in the such, Respect patients’ views and guarantee confidentiality, Support communication and practicalities of working in a research, and Training in research tools and methods. If these practicalities are met and clinicians and researchers are approachable, patient, and genuine, the collaboration of these two with patients as research partners not only benefits the research process and its outcome but also enhances the integrity of the research, potentialising its results.

Diana Rose The mental user movement and research

Mental health care users are permanently confronted with mistreatments, and they frequently suffer forced medication, ECT, and involuntary admission to mental hospitals. Whereas most patients can refuse treatments that they do not want, this is often not the case in psychiatry. To overcome what can best be described as the violence inflicted on them, user movements and research groups were established with a frequent emphasis on human rights. They were often anti-medical, and wanted to contribute to the promotion of rights and better treatment of people with a mental illness diagnosis. Most projects started were very small scale and under-funded. Subsequently however, two national charities set up user-led research teams within their organizations

In 2001, the Institute of Psychiatry in London set up a research team called the Service User Research Enterprise (SURE)[8]. Its aim is to elucidate the experience of service users – how they deal with their distress and how they feel about the treatments and services they receive. SURE’s first studies were not welcomed by mainstream researchers but were written off as anecdotal and biased, given that the researchers were users themselves. Therefore the idea of publishing in mainstream medical journals was virtually impossible. Whilst collaboration between professional researchers and users is now becoming more widespread, at least in Britain, effectiveness is often undermined by inadequate support and by the intrusion of power differentials into what should be collegial relationships. Diana Rose acknowledged that these ‘spill-overs’ from orthodox research practice and from clinical hierarchies will not be easy to overcome.

SURE research has proven how the implementation of user-focused approaches can work and can make a difference, though there is a long way to go. She stressed the need to develop alternative theoretical and philosophical assumptions and research methods and for research that assesses the kind of difference that user-led research actually makes.

Harrie van Haaster
Experience with action research in collaboration with user groups in health care systems

Harrie van Haaster was one of the founders of the Dutch organisation established in 1995 as the Instituut voor Gebruikersparticipatie en Beleid (IGPB). The goal of the Institute was to provide support for client groups, principally in the mental health area, seeking to make their own assessments of the quality of service-provision, or to conduct research from a client-perspective. Today the Institute is engaged in a wide range of research and development projects and in the provision of training courses for service users[9]. Training focuses on issues such as assessment, management, writing a life story etc. In his presentation Harrie van Haaster stressed the importance of systematizing patients’/users’ knowledge acquired through experience . Only in this way can it provide a trusted input to the management and development of health care systems.

The IGPB model of research participation supposes user involvement at all stages of a project. It should be designed and undertaken by users themselves, with professional researchers providing support as and when needed. In this context, the responsibility for initiating research lies with user organizations: they must recognise and prioritise research topics whilst academic researchers function as facilitators and provide support. Research like this ensures that the issues being tackled are the appropriate ones, that the perspective is that of users, and it should help user organizations achieve a more effective voice in policy making.

Conclusions

Today lip-service is often paid to the idea of involving ‘patients’ or ‘health care users’ (and/or their organizations) in research. But this is often little more than a gesture in the direction of political correctness. And whilst there are various examples of patient involvement being pursued practically, effectively, and to the mutual benefit of both researchers and patients/users, little has been done to share and disseminate these positive experiences. The objective of this workshop was to help this work of dissemination: to provide and analyse positive experiences, and problems, and so stimulate bridge-building between the worlds of medical and health research and of European patient organizations and publics. This objective is central to the missions of both INNOVIA and the European Patient Forum, whilst ZONMw (that sponsored and hosted the workshop) is an organisation that, in the Netherlands, has made involvement of patients/consumers central to its policies and practices.

Speakers came from three countries (France, the Netherlands and the UK) in which substantial experience has been gained; from very different areas of health care (mental health, rheumatology, neuro-muscular diseases); and from very different kinds of institution (patient organizations, research organizations, intermediary organizations).

Involvement of patients as co-researchers/research partners

The starting point has to be convincing researchers that involving patients as co-researchers is not only possible but can actually benefit their research, and can add to its potential impact in practice. After that potential research partners have to be recruited, possibly with the help of local patient associations (where these exist). Thought has to be given to the ways in which they are to be involved at each stage of the research, from planning and research design, through conduct of the research, to interpretation and dissemination of the findings. Each step poses its own challenges, but clarity of objectives is essential. Patient-colleagues may need some training in research skills, but researchers (however experienced) may need training too, in social and ethical aspects of working with new kinds of colleagues. Additional budget may be needed and special facilities may have to be provided, depending on the needs of the co-researchers.

A number of the speakers made clear, from their own experience, that difficulties are considerable, but once identified they can be overcome. These difficulties are very varied in nature, ranging from practical matters such as accessibility of meeting places and a willingness to explain complex terminology, to more social-psychological matters. For example, clinicians and patients – accustomed to a doctor/patient relationship – may both find it difficult to relate as colleagues in a research team-meeting.

A Manual for researchers, setting out the things to think about, and the issues that might arise, can be of very great value in helping researchers get started. That produced by INVOLVE in January 2000[10] is an excellent example.

Although standard guidelines can be a great help, issues that can arise will not be completely uniform across areas of research or from country to country. For example, doctor-patient power differentials are probably a larger problem in the field of mental health research than they are in other areas. Or, as another example, whilst patients might well feel more affinity with the interpretative qualitative methods used in some fields of social science, qualitative research of this kind is viewed as ‘unscientific’ in much of biomedicine.

Evaluation studies designed to assess the quality and impact of projects involving patients (and still more of patient-led research such as that described by Diana Rose) can be of great value. Few such studies have as yet been been conducted.

Local successes but no diffusion mechanisms

Many successes have been local: starting hesitantly and then growing as experience is accumulated and trust builds up. Mechanisms need to be found for making these positive experiences, and the lessons learned, more widely available. Formal and independent evaluations, as mentioned above, can be one such mechanism if these evaluations are published. Other possible mechanisms include popular accounts in journals and newspapers, national workshops (such as the INVOLVE biennial conferences), and meetings organised at the European level by patient groups and associations themselves.

The importance of national structures to facilitate patient/consumer involvement

The emphasis in the above has been on the local initiatives of specific institutes . But the achievements of INVOLVE in the UK show that a central organization that provides support and training to patient representatives, evaluates experiences, tries to establish and publicise guidelines and organises national workshops can make an enormous difference. Not least, it can help with the dissemination of effective practice. In the UK, many steps have been taken in the recent past to make the National Health Service more responsive to consumer demands, and consumers are represented at many decision-making levels. As a result INVOLVE (and for that matter the National Institute of Health and Clinical Excellence, NICE, that also has a Patient and Public Involvement Programme and a Citizens’ Council[11]) functions in a context that may be specially in tune with its objectives. Nevertheless the benefits of a central organisation like this, and the transferability of the INVOLVE model to other European countries, are worth serious consideration.

Possibilities for developing research resources by the patient movement itself

The development of the DED springs from a rather different philosophy. Convincing researchers of the value of actively involving patients in their projects is one thing. For the patient movement, or specific organizations, to develop their own corpus of research data is quite another. In addition to being a resource for individual patients, wishing to keep a systematic record of their experiences (for example, with acute illness episodes, gaining access to desired treatments, dealing with professionals), the DED has the potential to become an invaluable research resource. Social scientists interested in (for example) the labour market experiences of chronically sick people, or health scientists interested in responses to new medications could well find it invaluable as a source of data. However, as Bram van der Ende stressed, this is a resource owned by the patient movement itself and to which researchers will have to negotiate access. The long term implications are considerable, and the DED model is one that patient movements in other countries should seriously think about.

Of course that is easier said than done! Patient organizations need first to be convinced that aggregating individual experiences, and indeed research itself, can be of value to them. Employing medical and social scientists as staff members or advisors would help enormously here, but few associations have the resources for this. A possibility, now being explored by the Medical Anthropology and Sociology Unit at the University of Amsterdam, is to arrange for senior students to spend a ‘stage’ with such an organisation, writing a research review or thesis.

Seizing power

What the AFM achieved in France is unique, and may seem beyond the wildest dreams of most patient organizations. But Vololona Rabeharisoa’s analysis helps us see this ‘seizure of power’ as a distant point in a long process. If we look at it like that then steps to be taken become clearer. That process, as she explained, is a complex one in which (a) securing access to independent expertise and (b) blurring the boundaries between ‘science’ and other ways of knowing health and illness are crucial. The initiatives described at the workshop, as well as recent initiatives taken by ZONMw, hosts and sponsors of the workshop, are in fact steps precisely in this direction.

Annex
Speakers – biographies

Sarah Buckland was trained in the social sciences and has carried out policy related research in the areas of health and social care for over 20 years. She is currently Director of the INVOLVE Support Unit. The Unit is funded by the Department of Health in England and carries out the work of INVOLVE, a national group which aims to promote and support the active involvement of the public in NHS, public health and social care research. INVOLVE believes that the involvement of the public in research can improve the quality of research by helping to ensure that it is relevant, appropriate, and acceptable to those who use health and social care services.
(see www.invo.org.uk)

Bram van der Ende trained in the fields of andragology and management, and worked for many years as lecturer and programme manager in the field of management and organization education. He has received an invalidity pension since 1993, the result of arthritis psoriatica. He is a member of the Boards of Management of various organizations of and for people with chronic illnesses and disabilities. Since 2000 he has been a member of the Board of the CG-Raad, responsible for the areas of public health, assistive technologies, and international contacts.

Harrie van Haaster trained in psychology. He received his PhD for a thesis on increasing the competences of psychiatric patients, and especially on opportunities for user participation in psychiatry. After a period as senior researcher in the field of orthopedagogics (special education) at the University of Amsterdam, in 1996 he helped found the IGPB. Working principally together with users/patients/people with disabilities and their organizations, the IGPB conducts research from a user perspective and designs training and other programmes for service users. (see www.igpb.nl)

Vololona Rabeharisoa is senior lecturer in sociology at the Ecole des Mines de
Paris. In collaboration with M. Callon she has written a history of the Association Francaise contre les Myopathies (AFM – French Muscular Dystrophy Association), notably on the involvement of the AFM into biological and clinical research. She is now involved in a study of collective mobilization in psychiatry genetics, with a view to understanding how genetic research enters into, and reshapes patients’ identities and families’ trajectories.

Pam Richards had a long career in banking which ended some years after developing Rheumatoid Arthritis. Primarily she is now a Patient Research Partner within University of Bristol and has participated in Rheumatology research projects, contributed to papers, presented at international conferences and supports other research partners. She is also a member of a local Primary Care Trust steering committee and the OMERACT patient panel.

Diana Rose is a senior lecturer at the Institute of Psychiatry, part of the University of London, and based at the Maudsley Hospital. Both a social scientist and a mental health service user, she carries out research from a service user perspective and co-directs the Service User Research Enterprise at the Institute. Before joining the Institute she pioneered user-focused research at a London-based charity.

Maarten de Wit has been active in organizations of patients with rheumatic diseases at local national and international levels for a number of years. Within the Dutch Reumapatiëntenbond he is currently responsible for research and international contacts. He is a member of the workgroup SWORA (Social Scientific Research related to Rheumatic diseases) and of the Scientific Advisory Committee of the Reumafonds. He is also Vice President of the Eular Social Leagues. In the last couple of years he has also contributed to the Dutch journals both of Medical Anthropology and of Rheumatology

Participants

Bernard Barataud, Ex-President, Association Française contre les Myopathies (AFM), President, Généthon (France)
Madame Barataud
Jaap Bestebreurtje, researcher NVSCM (Netherlands)
Stuart Blume, INNOVIA (Netherlands)
Sarah Buckland, Director INVOLVE (UK)
Rodney Elgie, Gamian Europe/Pan-European patients groups (UK)
Bram van der Ende, CG Raad (Netherlands)
Geert van Etten, INNOVIA (Netherlands)
Harrie van Haaster, researcher IGPB (Netherlands)
Sylvia de Haan, Head of projects & programs, COHRED (Switzerland)
Mechtild de Jong, INNOVIA (Netherlands)
Renata Klop, ZONMw (Netherlands)
Kyra Landzelius, researcher University of Gothenburg (Sweden)
Rod Mitchell, Chair European Federation of Crohn’s & Ulcerative Colitis Associations EFCCA (UK)
Karen Mogendorff, researcher LFB Onderling –Sterk (Netherlands)
Christien Muusse, researcher NetClienten/SCIP (Netherlands)
Maria Fernanda Olarte Sierra, INNOVIA (Colombia/Netherlands)
Janus Oomen, internist, researcher UvA (Netherlands)
Mary Lynne van Poelgeest-Pomfret, Vice President, World Federation of Incontinence Patients WFIP (Netherlands)
Vololona Rabeharisoa, researcher École des Mines, Paris (France)
Diana Rose, co-director Service User Research Enterprise (SURE), Institute of Psychiatry of London (UK)
Pam Richards, Patient research partner University of Bristol (UK)
Henk Smid, Director ZONMw (Netherlands)
Cees Smit, Board member VSOP (Netherlands)
Vladimir Vladimirov, Association of people with Muscular Dystrophy (Bulgaria)
Stephanie Weinreich, Research policy officer, Dutch Association for Neuromuscular Diseases (Netherlands)
Maarten de Wit, Reumapatiëntenbond (Netherlands)
Albert van der Zeijden, Chair, International Alliance of Patient’s Organizations (IAPO) (Netherlands)

[1] For a detailed (sociological) analysis of the Dutch patient movement see Trudi Nederland and Jan Willem Duyvendak De kunst van effectieve belangenbehartiging door de patiënten- en cliëntenbeweging Utrecht Verwey-Jonker Instituut 2003
[2] A Herzheimer, A McPherson, R Miller, S Shepperd, J Yaphe and S Ziebland “Database of patients’ experiences (DIPEx): a multi-media approach to sharing experiences and information” The Lancet 355 (2000) 1540-1543. See also www.dipex.org
[3] J. Yaphe, M. Rigge, A Herxheimer, A McPherson, R Miller, S Shepperd and S Ziebland “The use of patients’ stories by self-help groups: a survey of voluntary organizations in the UK on the register of the College of Health” Health Expectations 3 (2000) 176-81
[4] The Innovia Foundation was established in the Netherlands in 2000 with as objective “to facilitate a socially optimal development and deployment of new health care technology through multidisciplinary studies and related activities which focus in particular on the individual and collective experiences, concerns and aspirations of end users” See www.innoviafoundation.org
[5] A ‘Telethon’ is a television programme, usually of ‘marathon’ length (for example, a whole evening) in which viewers are encouraged to telephone in with donations to the cause in question. The audience is kept abreast of the volume of funds pledged throughout the evening.
[6] See http://pdver.atcomputing.nl/ded.html
[7] TNO – the Netherlands Organisation for Applied Research
[8] http://web1.iop.kcl.ac.uk/iop/Departments/HSR/sure/index.shtml
[9] See www.igpb.nl .This website includes a short overview in English.
[10] Involving Consumers in Research and Development in the NHS: Briefing Notes for Researchers (downloadable from www.invo.org.uk )
[11] See www.nice.org.uk