Innovia Inaugural Conference

Patient Experience and New Technologies in Health Care held at

The Rockefeller Foundation Bellagio Study and Conference Center

September 2-6 2002

This Report on the proceedings of the Innovia Conference has been prepared by Stuart Blume and Norma Morris, and comes with the grateful thanks of Innovia and the participants for the support and encouragement given to their work by the Rockefeller Foundation and its staff at the Bellagio Center.

The INNOVIA FOUNDATION

for Medicine, Technology and Society was established in October 2000 as a non-profit Foundation registered in the Netherlands, 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

These aims require us to address the question of how experience-based knowledge, and the context-sensitive studies which can elucidate it, can achieve the necessary salience and authority. We believe that the first step is to stimulate interaction both between a wide range of scientific and scholarly disciplines, and between longer-term conceptual/methodological research and more policy/practice oriented studies. Innovia thus aims to produce and synthesize the basic knowledge that should inform the work of patient organizations and enhance the quality of public debate and decision-making. In order to accomplish this it will be necessary for us to devote significant attention to dissemination activities, ensuring the involvement of potential users of its work in Innovia’s research practice. We will draw on the medical and scientific expertise needed to understand technologies under development, and on knowledge of different health care systems. We will also want to develop relations of mutual trust with major actors in health policy, practice, and the private sector: relations that should ideally lead to long-term collaborations. These requirements have led to Innovia being established as a (virtual) research institute, in order to provide for a degree of sustained interaction, coherence and central management.

The purpose of this conference was to bring together members of Innovia’s Scientific Advisory Board, Fellows and invited guests to develop Innovia’s agenda in the light of their own research and experiences. By virtue of its highly interdisciplinary character, and its mix of researchers and practitioners (a number of participants being both), the conference would thus contribute importantly to that first and vital step. It should enable us to lay the groundwork for successful and innovative future studies. This meeting was an opportunity to develop strategies and create new methods suitable for transnational and interdisciplinary research: research centred on patient experience and the factors affecting its expression.

FORMAT OF THE MEETING

In order to maximise the opportunities for discussion and interaction, the conference departed from the usual format of short formal presentations by individuals on their work. Instead the programme was structured around three broad themes, which members had been invited to comment on in short, pre-circulated papers. These themes were:

· The experience of illness and treatment and its cultural mediation
· Theoretical, methodological and ethical issues in the study of patient experience
· Patient collectivities: from personal experience to collective action

Discussions on these themes were preceded by an introductory session, where participants outlined their research and policy interests and identified commonalities or complementary perspectives. Following the three thematic sessions, the group focused on the development of a research strategy, with the help of presentations from guests and members with special experience of institutions pioneering participative approaches to health policy and practice. In further plenary discussions, and in break-out sessions, the threads were then pulled together, to yield an agenda and work-plan for the future development of Innovia.

THEME 1: The experience of illness and treatment and its cultural mediation
Chair: Nicky Britten
Discussant: Margaret Lock
Precirculated papers from: Aigli Chatjouli; Kyra Landzalius; Radhika Ramasubhan; Tuula Vaskilampi.

Nicky Britten, as chairman introduced the session, and then Margaret Lock opened the discussion with a critical examination of the terms of the session title and a brief review of points emerging from the papers.

‘Experience of illness’: Research on the experience of illness has often been conducted within a phenomenological framework. This emphasises subjectivity and has been criticised for its limited scope and for failing to consider the experiences of others who are involved and the context of illness. The problems in attempting to study the experience of illness include:

Using retrospective data when there is good evidence showing inaccurate recall of symptoms more than two weeks after the event;
Analysing and generalising from narrative accounts, so as to provide the kind of evidence that will engage policy makers;
Allowing for the influence of the listener’s interpretation on the content of a narrative
The need for systematic analysis and the inadequacy of current qualitative software analysis packages for this purpose.

Treatment
Treatment needs to be understood in a broad sense, to include preventive measures and treatments to enhance human functioning. There may be conflicts of expectations about what various treatments will achieve: whether the aim be cure, averting death, or enhancing life. There are issues here about public education and public knowledge. It is important to remember that strategies designed only to ‘inform’ the public so that they will then accept new technologies have been repeatedly shown to be ineffective. This is an issue not only for medical treatments but also for GM foods, pollution and so on. There is also the issue of parallel use of different modes of treatment, both orthodox and non-orthodox.

Cultural mediation
The concept of “culture” is undergoing critical reappraisal among anthropologists, and some North American scholars have stopped using it. Discussion of culture can too easily become a deterministic discourse which ignores socio-economic circumstances especially poverty. Some of those who have highlighted cultural differences have allowed this to mask other more powerful issues, whilst some medical curricula invoke primitive notions of ethnicity and culture to “explain” (for example) non compliance. Moreover in a globalised world, there is less and less transmission of a body of knowledge from generation to generation. Researchers need to pay attention to the internet, migration and other manifestations of globalisation. Another illustration of the need to deconstruct the term ‘culture’ comes from Japan and elsewhere where the concept of culture is mobilised for political purposes, under the name of “tradition”. Important differences do exist, but we may be able to distinguish these better if, instead of talking about “cultural mediation”, we perhaps talk about “mediation in the popular and public domain”.

Discussion
In her overview of the papers linked to this session, Margaret Lock highlighted a number of issues raised. These included: the new tasks for medicine, as exemplified for example by enhancement technologies, and their implications for the patient/consumer; changing or differing expectations addressed to health care; the extent and origins of trust (or ‘blind belief’ to use the phrase in Tuula Vaskilampi’s paper); who is manipulating whom in the triadic relationship of doctor-patient-industry? These and other themes were then taken up in the discussion that followed.

New technologies
New kinds of technological interventions in medicine require attention to new forms of subjectivity: this applied to technologies such as organ transplantation as much as to Intensive Care Units and premature baby units. Work on the latter has demonstrated that patients were not ignored because of the attention required by the machines; nor were neonates eclipsed by the incubators. There is the question of who is driving technological development: professionals, or lay people wanting the benefits of innovative technology. In this respect we might wish to investigate where trust in technology, in situations where it exists, comes from. One of the papers had noted that many people in Finland have a blind belief in technology, citing the high level of ownership of mobile (cell) phones that was very rapidly achieved. Others may be sceptical about new technology in general, but may want technological solutions to their own problems. Developments in HRT (Hormone Replacement Therapy), for example, may have been driven more by women than by professionals, with doctors finding themselves as ‘pig-in-the-middle’ between women and the pharmaceutical industry Studies of patients’ expectations with regard to prescribing of antibiotics had raised questions about prescribing possibly being driven by patients. It is natural for sociologists to assume that it is the patient who is being manipulated, but this may not always be so, especially in the case of enhancement technologies.

In contrast to the proliferation of technologies in some areas of medical practice, there may be insufficient technological advancement in others. Preventive health care is an area in which incentives to innovate have been inadequate from a societal point of view. This is exemplified by gradual disengagement by the pharmaceutical industry from the field of vaccine development in the 1970s and 1980s. It was recognised that new incentives would have to be designed if essential new vaccines (for example against parasitic diseases such as malaria) were ever to be developed, and if vaccine supplies were to be safeguarded.

Sectoral versus societal interests
There are examples of problems caused by patient activist involvement: a recommendation by a NIH committee that testing for genetic susceptibility to breast cancer should only be carried out under controlled conditions (to allow for counselling, etc) was overturned by feminist lay members who objected to the implied paternalism. This allowed commerce free rein and cannot be construed as in the best interests of the women at risk. Advocacy groups may not always be representative of the constituencies they claim to represent.

At a broader level there are questions about what impact genetic testing has at the level of society. Discussions of risk factors and genetics both tend to focus on individuals and deflect interest from socio- cultural conditions and consequences. On the other hand, results of genetic tests may shift responsibility away from individual mothers who might otherwise feel themselves responsible for their children’s imperfections.

Patients or consumers? Different roles and different narratives
Consideration of the role and influence of patients and activists led to a discussion of terminology – are we talking about consumers, patients, lay people, clients or citizens – and of what difference terminological distinctions make. Each term has its own advantages and disadvantages, a problem with the last one being that professionals are citizens too! The term ‘consumer’ can imply a market situation and an individualistic model that may be inappropriate (for example in poor countries). Some activists do not want to be ‘patients’ while others may. While in practice it is useful to have a single term to designate an identifiable, though variable, client group, it can be argued that the terminology used should depend on context. The contextualisation may be social – eg the kind of health system – or individual – eg people visiting their doctors are in the role of patient while in the consulting room. The important thing is to understand the variability over time and place of the ‘patient voice’ and how the narratives that emerge depend on context and audience.

Types of knowledge, risks, and uncertainty
It was recognised that individuals may have access to, and may draw on, alternative (and possibly conflicting) ways of knowing. Formal codified knowledge, as articulated by professionals, can conflict with knowledge grounded in personal (lay) experience, and this can be a source of profound uncertainty. Lay experience is moreover a dynamic process, modulated by expectations, and research should allow for this. Such research could enable people better to reflect on their own experiences.

It was suggested that, within the lay perspective, there may be a tendency to emphasize benefits more than risks. This might reflect patients’ or carers’ needs for greater certainty, which may in turn lead them (as in the ‘REVEAL’ trial) to reconstruct information given them about risks in order to reduce uncertainty.

Information and the Internet
The question of risks and uncertainty is germane to that of access to information and to other ways in which patients try to take control, such as self-medication. In discussion it was suggested that information was best seen as only the start of the process of decision making. Ideally information from the internet should promote good discussions between patients and providers, but is this what motivates the search for information? . Should we view recourse to the internet rather as a sign of lack of trust in doctors? Some patients may have doubts about admitting their use of the internet to their health care providers. Internet also has functions for the patient collectivity. Some patient groups use the internet to share their experiences of illness and health care, whilst a website offers a cheap and practical way for small patient organizations to contact their members. Internet clearly has potential for the further collectivisation of individual experiences and knowledge.

Methodological issues
Another discussion session was scheduled to focus specifically on methodological issues involved in working with individual narratives. We will need to consider how, and in how far, generalisations can legitimately be derived from individual narratives. We will also need to consider the role of the researcher in the production of knowledge; that is, we will need to be reflexive in our research. Our own positioning, and respondents’ expectations of us as researchers, will affect the narratives we elicit. There are also moral implications inherent in the relationships we develop with respondents, as Radhika Ramasubhan’s paper pointed out.

Next steps
The discussion had opened many issues that would need further exploration. The Chairman summarized by offering a reformulation of the original question in the light of discussion: How do people form their opinions and expectations of new health technologies, both positive and negative? What are the roles of formal information sources such as internet, of personal experience, and of patient collectivities? With what degrees of certainty or uncertainty are views held?

THEME 2: Theoretical, methodological and ethical issues in the study of patient experience
Chair: Linda Hogle
Discussant: Isabelle Baszanger
Precirculated papers from: Norma Morris; Linnie Price; Emilio Sanz; Charles Weijer.

In a brief introduction, Linda Hogle, as chairman, recalled that the objective for this session was to explore ways of studying the themes raised in papers and conference discussions. Specifically, there are conceptual issues about how to approach studies across disciplines, analytical perspectives, national contexts, and institutional bases of Innovia researchers. There are also pragmatic and ethical difficulties inherent in research that cuts across institutional and societal contexts. Over time, we hope to develop new methods for studying patient and user experience in the design and development of new technologies. Research designs will need to be appropriate both methodologically and ethically, and they will need to allow for research that may be conducted transnationally.

The discussion opened with a review of the papers for this session by Isabelle Baszanger. The papers included Emilio Sanz’ discussion of multinational research on asthma in children and the difficulties inherent in obtaining permission for research on human subjects in social science research protocols; Charles Weijer’s paper, which raised questions about how to define “communities” in research and how best to include participants and gain permission for studies; and Norma Morris’ paper about her work in new breast screening technologies, which added the important dimension of healthy study participants, who have a distinctly different trajectory through the innovation process than do ill patients.

Isabelle Baszanger’s commentary on the papers and the theme more generally challenged participants to think about questions of patient “empowerment” and experience. For what purpose (and for whom) are we studying patient experience? If we focus too much on narratives of experience, then we continue the intellectual tradition of segregating physician from patient domains. The relationship between physicians and patients changes and is negotiated over time and circumstances, particularly when innovations are being introduced. The operational knowledge in play, then, frames the trajectory. Also, the type of illness makes a difference in experience: in trauma cases, patients are more dependent, whereas patients with chronic illnesses may become extremely knowledgeable and more proactive in managing their experience. But rather than just collecting experiences (which might help with a taxonomy of patients’ concepts), it may be more important to learn how the concepts used do or do not gel with broader social undercurrents.

Discussion

Patient narratives
Among the points raised in the discussion was that narratization is also often strategic. That is, patients’ construction of narratives constitutes a political reframing of disorders themselves and the utility of innovations for them. This linked with various points made about the importance of the context of narrative, and evidence from empirical work on what patients tell to different auditors. Analysis should be extended to place patient narratives in the context of the roles of other actors, the development of patient-physician relationships, and broader social frameworks.

Empowerment
Another point raised concerned patient “empowerment, “ and our responsibilities as social scientists in this regard. It was recognised that there are often unintended consequences to changing these dynamics. There was discussion of whether aiding empowerment is the proper role of social scientists. Some of those present wanted to pursue empowerment as a part of more activist-oriented work – to ensure that domains of interest to patients were sufficiently opened up – whilst others stressed what they saw as the primary need for inquiry. How do patients in practice figure out ways of dealing with medicine? Only when this is better understood is it possible to think about creating a role for patients in innovation.

Relating to the social framework
Central to the discussion was the perception that it is impossible to separate innovation processes and patient experiences from social and political processes: of globalization and its effects on rich and poor countries; of changes in policy and political-economic conditions; and from the factors that influence whether, and if so how, individuals form collectivities around disorders or health concerns. In countries such as Malaysia, with highly restrictive policies on the release of ‘official’ information, the collection and distribution of information proceeds under different conditions than in countries with freedom of information acts or other ways of managing information. Historical and social specificities cannot be left out of our research questions.

As Innovia researchers, we can use our insights into innovation and patient experience within specific settings to shed a particular light on global processes manifest not only at the global level – for example in the international activities of pharmaceutical and device companies; in changes in flows of goods, services and capital; and in emerging international efforts in disease control and patient advocacy – but also at the national level – where for example health policies may be seeking in different ways to bring about a shift from public to private funding and ownership of health care facilities.

Research ethics
Important questions were raised about ethical relationships in our own work. Is the moral framework for doing social science research so fundamentally different from other types of ‘health’ research that it requires rethinking the ethical framework (largely borrowed from biomedical research) as well as the ways in which we manage our own research practice? The risks and potential benefits, and the relationships between social researchers and study participants, may be sufficiently different from those prevailing in biomedical research as to require specific attention for moral problems in research design and oversight. Additionally, we need to continue to consider carefully the entitlements and responsibilities entailed by introducing private data and the personal narratives of study participants into the public sphere.

Conclusion
The discussion in this session also served as a basis for more detailed discussions of specific study areas in breakout sessions that took place at the beginning of the following session. Additionally, a subgroup of participants formed to pursue specific questions regarding research ethics.

THEME 3: Patient collectivities: from personal experience to collective action
Chair: Anita Hardon
Precirculated papers from: Stuart Blume; Komatra Chuengsatiansup; Anita Hardon; Richard Harvey; Volonona Rabeharisoa and Rayna Rapp.

In opening the session Anita Hardon, as Chairman, highlighted the richness of the papers both in their presentation of conceptual issues and in suggesting concrete ways of doing research with or from within patient and consumer groups. Stuart Blume’s paper described how associations of the deaf in Europe had responded to the cochlear implant: not advocating a new technology as is often the case, but mobilising against it, though in ways that differed from country to country. Rayna Rapp and Vololona Rabeharisoa reflected on the stake patient support groups may have in scientific and clinical research, while Richard Harvey’s paper (considered in his absence) showed how a network of people confronted with Alzheimer’s Disease could be systematically involved in setting priorities for research. Anita Hardon’s paper outlined how the medicine-user network Health Action International represents users in its campaigns.

Here too it became clear that patient/consumer collectivities do not operate in a vacuum. Linnie Price’s paper, considered at the previous session, and that from Komatra Chuengsatiansup pointed to the political, social and economic conditions which shape the opportunities for patient/consumers to get involved in health care policy and implementation.

Discussion

Personal experience
What do we mean by personal experience and how does it get translated into collective action? It was suggested that we need to understand the way people view health and illness in order to understand how they view health technologies, and that the social organization of a given movement may become a discursive space in which people exchange and construct experiences with biomedical technologies. For example, in Thailand the alternative health movement acts as a one such space within which illness experience is communicated and expressed. Such construction of experiences also takes place on internet websites, such as the Social Audit site. It was suggested that it would be useful to distinguish distinctive domains of experience, and explore the ways in which patient organizations may transform individual experiences through aggregation and ‘reframing’. .

Collective Action
The role of social movements in shaping responses to technologies such as nuclear power was well established, but it was now becoming apparent that something similar could occur with medical technologies. In the Deaf community the cochlear implant came to be seen as a symbol of cultural oppression and abuse of medical power. But what determines the wider propagation and impact of such a view? We should look not only within the movements – at the arguments which are exchanged and constructed – but also at the political conditions under which those arguments may be deployed. The ability of social movements to be successful in their campaigns depends not only on their arguments, but also on their access to the media and to influential people in society, and to the political process in a given country. (In the latter respect, the climate of secrecy in Malaysia seemed to be in sharp contrast with the apparent openness of political process to civil society in Thailand). A striking example of how patient mobilisation may intertwine with social structures, law and economic interests was the case of the genetic support group PXE International, whose name appears on the patent application for property rights on ‘their’ gene. There is additionally a need to look into the kinds of disorder around which patients mobilise (and the way they label the disorders). It makes a difference to be a ‘group at risk’ but not (yet) ill; or a group with physical disabilities, or a group with a life threatening disease like AIDS. How are a common language, counter discourses and collective identities constructed?

Representation
In considering the design and application of medical technologies as social rather than as purely technical processes there are important issues about who represents whom and by what means. Some movements claim to represent patients (or a segment of these); whilst other represent (potential) users; or healthy subjects. What authenticates these claims? Little has been written about either the nature or the legitimacy of attempts made by patient movements to build generalisations out of patient’s narratives and experiences in the use of technologies. The paper by Anita Hardon presented two different ways in which the consumer movement represents users, whilst that by Stuart Blume described how Deaf communities needed to remain sensitive to differences in views within their constituencies whilst still coming up with a unified position on matters that might be controversial. Examination of the various ways in which users are represented in policy dialogues and health care institutions could be particularly fruitful.

Comparative studies
Turning to more practical questions of what research Innovia might initiate, participants agreed that comparative studies would be central. The paper on cochlear implants provided an example of cross-national comparison of Deaf community rhetoric and actions in different national settings. In addition, intra-national studies of different patient associations could also be valuable, recognising that they might have different goals – for example those focused on cure and those more focused on technologies that enhance quality of life – and different organizational structures. .

Modes of patient engagement in research
Another theme for Innovia is how patient groups are engaged in research. This was reflected in the pre-circulated papers. Here the model of the Alzheimer ‘s Society (UK) stands out for its success in involving people living with Alzheimer’s in setting the research agenda, in evaluating research proposals, and in monitoring research-in-progress. Evidence was also cited of how patient groups, including the AIDS movement and the women’s health movement, have succeeded in promoting changes in the production of biomedical knowledge, while another paper touched on how patients acting as ‘human subjects’ might be given a voice in clinical trials.

Negotiations on what counts as evidence
A third methodological theme is the question of ‘what counts as evidence of safety and efficacy’ in the introduction of new therapies, and the scope for renegotiating the nature of evidence in seeking socially optimal use of existing technologies. This could involve study of what translation processes take place; what kinds of structures facilitate negotiations or dialogues with more input from end-users; how government policies and practice impinge on dialogue; and on the role of the pharmaceutical industry.

Next steps
It was agreed that the best way to take forward this agenda – together with themes identified at earlier sessions – was to form break-out groups to develop more specific ideas and proposals for work on particular topics. The meeting therefore split in two working groups, subsequently reconvening to hear reports from the two groups.

Group 1 On the translation of personal experience into authoritative knowledge: methodological issues

John Pickstone reported on behalf of the group that the discussion had focussed on:
a) How to give a higher profile to patient views. This could include deriving new directions of study from patient experience data on the web; legitimisation through inclusion in educational programmes; the use of patient experience data to influence Quality of Life scales (recognising that though such scales have severe limitations they are a possible point of insertion);
b) Codifying meta-level experience of trying to change the system: disseminating activist experience.

Group 2 Patient Groups

Rayna Rapp reported on behalf of the group that their discussions had focused on:
a) How to understand where, why and when patient groups do or do not emerge? What local spaces lead to those who are marginalized, stigmatised, isolated by bodily difference coming to recognize commonalities in experience and the scope for collective action? How is the emergence of patient groups influenced by processes of globalisation and medicalisation?. For example, formation of HIV/AIDS and women’s health umbrella groups was stimulated by global programmes addressing AIDS and women’s health. Sickle cell anaemia ‘became’ a disease in Senegal after it had been defined as such in respect of West-African immigrants in France. The pharmaceutical industry may play an increasingly important role by providing resources to organizations forming around specific types of medical need..

b) Rather than studying patient activism, Innovia should study the gender, kinship, and community bases of care, as well as the sources and consequences of stigma and isolation. ‘Groups’ may or may not emerge around specific health needs, whilst dilemmas of care are present everywhere.

ORGANIZATIONAL STRATEGY I: The role of virtual research institutes in general and Innovia in particular
Chairman: John Pickstone
Presenters: (1) Happiness Minja; (2) Stuart Blume
Precirculated paper from Stuart Blume.
Presentation by Happiness Minja: The Experience of COHRED (Council on Health Research for Development)

Happiness Minja gave a slide presentation on the work and functioning of COHRED, a Geneva-based international non-governmental organization (NGO), with a mission “to act as a global activist in enhancing the development of effective national health research systems based on the ENHR (Essential National Health Research) strategy, including the values of equity and social justice, by working with in country teams, by mobilising and supporting country and regional networks and by offering a platform for countries and regions to voice their concerns as equal partners in international forums”. On behalf of COHRED’s Director (Dr Peter Makara), Dr Minja wished Innovia well, and indicated that COHRED would be willing to discuss the possibility of future collaboration between the two organizations.

Questions and discussion following the talk turned mainly on how COHRED related to its ‘client groups’ in developing countries and how, as an NGO, it handled the potentially sensitive area of relationships with national and international governmental organizations It was thought that the functions developed in COHRED – of advocate, broker, etc – could be very relevant to possible Innovia strategies, though the inclusiveness that was characteristic of COHRED would not be transferable to Innovia’s more specific and focused concerns.

Presentation by Stuart Blume: What should INNOVIA do and how should it do it?

Stuart Blume described Innovia as an organization aspiring to a global structure and global collaborations, but (like COHRED) skeptical of the value of global solutions. Innovia research would be characterized by its taking a bottom-up perspective on health and health care (with a focus on new technologies) as its starting point. A second characteristic would be concern with building bridges to local debates and civil society organizations. In line with this dissemination, rather than advocacy, would be stressed. Appropriate organizational links would of course vary from country to country. In the Netherlands, for example. links were already established with the patient movement, whilst elsewhere quasi-governmental organizations (such as, in the UK, ‘Consumers in NHS R&D’, with which contacts also existed) might be appropriate partners. Examples of the kind of project Innovia might undertake were already emerging from the discussion. They included: How people are or might be involved in HTA (Health Technology Assessment) or other assessment/decision-making processes relating to health technologies; expressions of preferences for types of healthcare (eg holistic, complementary or alternative medicine); the evolution and functioning of HIV/AIDS groups; the reformulation of concepts of Quality of Life, now crucial to measures such as the QALY (Quality Adjusted Life Year) but which failed to take account of cultural difference and variation.

We would need to consider mechanisms for taking such projects forward. One way might be to set up Working Groups of Fellows that could collectively develop research proposals on priority themes. A Working Group might consist of, say, 6 members drawn from different countries, each of whom could first review existing work and experience in his/her own country (but possibly unknown abroad). The Group collectively would then review the desirability of additional cross-national research and (where appropriate) write a proposal for funding of further work.

ORGANIZATIONAL STRATEGY 2: Putting INNOVIA research to use: relations with patient/consumer and other user organizationsChairman: Wiput Phoolcharoen Presenters: (1) Chan Chee-khoon; (2) Chap Seak Chhay
Precirculated papers from: Chan Chee-khoon; Chap Seak Chhay; Wiput Phoolcharoen.

Given that relationships with potential users of its work would be characteristic of Innovia’s work, this session returned to the crucial questions of ‘with whom or what such relationships should be developed’, and ‘how they should be developed’. In many developing countries there were few, if any, patient organizations. Chan Chee-khoon presented his paper on ’The Citizen’s Health Initiative: combining policy analysis with healthcare activism’, which outlined the significant contributions that the people’s health movement in Malaysia had been able to make to national debates on the corporatisation and privatisation of healthcare, and the strategies that had been found successful.

In discussion, Dr Chan further explained that the Malaysian health system was situated about half way between the US and the UK in terms of the public/private divide, and costs amounted to around 3-4% of GDP. The outflow of trained staff was a major problem. The policy importance of the campaign against corporatisation was heightened by apparent inadequacies of the official Malaysian systems for awarding contracts: Health Ministry expenditure on hospitals, for example, actually rose after privatisation measures. An interesting recent development is that the Malaysian Medical Association has taken a position similar to that of the Citizens’ movement in respect of the desirability of a single national health insurance scheme.

Chap Seak Chhay commented on his paper on the ‘Health Care System in Cambodia’, which described the 8 core strategies employed by the Cambodian Ministry of Health to bring equitable, quality health care to the people through targeting resources at priority areas, and briefly outlined the current status and issues to be addressed in the next five years.

In discussion, Dr Chap highlighted the importance of building bridges between research and policy, where he hoped Innovia would have a role. It was remarked that Ministry of Health policies are sometimes formulated at too great a remote from health care providers, let alone from consumers. We should consider the important question of how (Innovia) research could help introduce a consumer perspective into policy making (which could be vital at times of change) when/whilst this was not adequately articulated in society.

Another important aspect of the relevance for developing countries of Innovia’s approach was its focus on new health technologies. Poor countries might not have the resources or the need for Health Technology Assessment (HTA) though they might welcome guidance with planning appropriate provision. How should Innovia adapt (or operationalise) its aims to be relevant to these countries? One approach could be to try to develop HTA methodologies appropriate to under-developed or under-resourced health care systems. Global processes are pushing technologies on the basis of Technology Assessments that typically reflect situations in a few industrialized countries. Such an analysis may say little or nothing about the utility of a drug or device for a country with a very different culture and level of economic development, and where it might be very differently used.

Admittedly technologies are only one among a number of possible national priorities in health care and in much of the world not the highest. Human resources and training often have highest priority, or the need to stimulate behavioral change both within the health care system and in society. But experience in the industrialized world is that research can be an important input in both of these areas too.

PROGRAMME PLANNING 1: Break-out Groups and Report Back

In order to develop some of the ideas for further work that had emerged during discussions, participants divided into 3 groups for more intensive discussion. The meeting then reconvened in plenary session to receive brief oral reports from the groups and continue discussion on building a forward agenda.

The reports from the groups brought forward a rich variety of suggested topics and certain dominant themes. It was agreed that further work should concentrate on:

¨ Methodological innovation. This might include methodologies in Technology Assessment, Quality of Life measures, and Clinical Trials, with the general aims of bringing in more experiential knowledge and bridging the current gap between qualitative and quantitative research.
¨ Genetics and genomics and their impact on patient and other groups, with an emphasis on cross-national and cross-disciplinary studies. Participants from developing countries noted that though these studies were likely initially to have a ‘northern’ focus, the issues had global relevance and that they might learn from the experience in more developed countries.
¨ Social problems around and strategies for AIDS/HIV infection: looking at non-treatment regimes, drug availability, changes in caring and coping strategies in families and communities, and the potential role of patient collectivities.
¨ Ethics – to consider if or how far the biomedical ethical framework is appropriate to social science research on health and health care, and to track international diversity in practice.
¨ The need for a database of research and researchers / anthologies of case studies of user responses. This was a resource likely to be of value for all projects, and for other organizations, and would be an aid to collaboration and dissemination.

The next consideration was to define and agree the criteria which any project must meet. Three key criteria were agreed:

· rigorous scholarship
· relevance to the goals and principles of Innovia, demonstrated in practice through continuing contact with appropriate patient/user/community groups
· collaboration – across nations, across disciplines and (where appropriate) with other organizations

Suggested projects would have to be tested against these criteria in the next day’s break-out sessions. As there would be only limited time for oral reports from the break-out groups, the group convenors undertook to provide written descriptions of what project groups wished to do and how they planned to work.

PROGRAMME PLANNING 2: Report Back and Conclusion

The break-out groups reconvened to take forward planning for the four topics of methodological innovation, genomics, AIDS/HIV, and ethics. In these discussions the groups identified the specific areas on which they would focus, sources of information and possible collaborators, and immediate actions including posting of data and arrangements for drawing up a defined and definitive proposal that would meet Innovia’s criteria.

Methodology Group
The group will critically examine dominant methods of medical knowledge production as used in clinical trials, in HTA, and in Quality of Life studies, in order to identify where alternative or complementary methods might be appropriate, and how these could be introduced. It will be important to involve a wide spectrum of disciplinary approaches, patient movements, and policy-makers. It will be important also to develop collaborative relationships with existing organizations (including the Cochrane Collaboration Consumers Group) with related concerns. For example, there is an initiative based in Uppsala focussed on patients’ reports of adverse drug reactions. The challenge is to feed patients’ reports into regulatory systems. There is certainly scope for complementary research in this area, for example, on how this can effectively be done.

The first step would be to put together the group’s collective knowledge of relevant work in progress. For example, in the UK there are at least two current projects studying Quality of Life (QoL) scales in order to determine what they actually mean to people and the extent to which they reflect the issues that are important to patients. Individual group members would post information on the e-project site, with annotations indicating relevance to Innovia, by early 2003. Drawing up a plan of work could proceed through virtual contact, but to finalise a proposal a workshop would be required

Convenors: Nicky Britten (nicky.britten@pms.ac.uk) and Anita Hardon (hardon@pscw.uva.nl).

Genomics Group
Of particular concern to Innovia is the question of how new genetic technologies are being positioned and “sold” globally, especially as they travel from richer to poorer countries. The objective of this Group will be to track this technology-in-expansion.

Its initial task will be to identify and review existing resources (ranging from case studies to the recent WHO report “Genomics and World Health”, available on the WHO website). All group members would review the material, with the aim of having a critical review completed by early 2003. A second strand was to identify relevant (patient/disease) organizations: for completion in 6 months. Thirdly, the group would map networks of laboratories, training and research interests, and identify the questions arising from this overview, with a view to possibly developing a proposal for collaborative research.

Convenors: Rayna Rapp (DNA646@aol.com) and Vololona Rabeharisoa (rabehari@csi.ensmp.fr)

AIDS/HIV Group
The group would focus on treatment and care of People With HIV/AIDS (PWA), considering how current coping strategies, and the roles of public and private sectors and patient/consumer groups. are affected by imminent changes resulting from the establishment of the Global Fund and from political discussions surrounding patents and drug manufacture. A particular aim would be to map the emergence, growth and roles of patient groups.

The Working Group will explore the possibility/desirability of a comparative study looking at three sets of interrelated actors – networks of associations of PWA and the public and private sectors for treatment and care, and for innovations relating to drugs and vaccines – and map their unique dynamics in each participating country. Each group member would thus begin by mapping developments in his/her own country. These reports will in turn be set in the context of national and global policies and movements (such as the human rights movements) impinging on the health care and scientific systems with relation to AIDS in these countries. We will want to see how health and technological inequalities at national and international levels are played out.

Convenor: Radhika Ramasubban (soctec@vsnl.com).

Ethics Group
The focus of this group was to examine the scope for establishing an ethical framework appropriate for social science research on health and illness in which patient experience is an important epistemological and methodological resource. It has been argued that ‘research which claims to empower must develop a research practice which is in itself empowering’. But what does this mean? What responsibilities to patients and to patient organizations are entailed? Do ways of sharing rights in the results of research need to be established? What are the ethical implications of social science research providing a ‘proxy voice’ for consumers in countries where patient organizations do not exist? The intention would be to develop both practical and fundamental approaches for establishing ethical guidelines for this kind of research.

The immediate tasks were to collect national guidelines and codes of practice of relevant professional organizations and ethics committees, and to identify issues arising from these. In parallel the group would collect case studies and stories of ‘good’ and ‘bad’ social science (cf the role of the Nuremberg and Tuskegee stories in medical ethics). A further, more ambitious project was to consider how an ethics of health research could be constructed from the ground up.

Convenors: Charles Weijer (charles.weijer@dal.ca) and Emilio Sanz (esanz@ull.es).

Conclusion
It was agreed that both in terms of their focus and proposed ways of working these four projects represent a fruitful way forward for Innovia. Many of the initial tasks common to each project could be conducted on a virtual basis with available resources: for example, developing bibliographies, sharing available data. Some participants in the meeting also had research assistant or student resources they were willing to contribute, and others not present might be similarly situated. The later stages of each project might well require team meetings, especially where it was agreed that proposals for funding (of the required rigour and specificity) would need to be developed. We will investigate means of organizing these meetings, bearing in mind the possibility of applying for Team residencies at Bellagio

It was noted that Innovia had not yet reached its planned complement of 50 Fellows. In order to keep the desired balance in distribution of membership, future recruits should largely be sought in regions currently under-represented (including Africa, Latin America, Eastern Europe). Existing members were invited to pass any suggestions to Stuart Blume.

Moreover, at the suggestion of Aigli Chatjouli, it was agreed to pursue the possibility of establishing a category of ‘Junior Fellow’ as a means of involving promising young scholars conducting (doctoral) research in Innovia’s field of interest , some of whom are rather isolated. Inquires can be addressed to achatjouli@yahoo.com.

The value of this plenary meeting as a vehicle for launching initiatives and confirming commitment had exceeded expectations, and biannual meetings of this kind would be a valuable means of accelerating and consolidating progress. Komatra Chuengsatiansup offered to organize a second meeting, in Thailand, in 2004. Various members present also offered to circulate details of meetings on themes relevant to Innovia’s interests, some of which might even serve as a site for an Innovia side-meeting.

This summary report, plus the more detailed reports by Working Group convenors, will be made available to all Innovia Fellows, and more broadly. Working Groups will be constituted on the basis of individual interest, but with attention also for appropriate geographical ‘spread’. Those interested are invited to contact the convenor of the group they would like to join, who can provide further information.

Participants

Dr Kaosar Afsana
(Senior Medical Officer (Research), BRAC, Bangladesh/PhD candidate, Dept of Interdisciplinary Studies, Edith Cowan University, W. Australia)
92A Drummond Street
Bedford
Western Australia

Dr Isabelle Baszanger
(Directeur de Recherche, CERMES/CNRS)
site CNRS
7 rue Guy Môquet
94801 Villejuif cedex
France

Dr Stuart Blume
(Professor of Science Dynamics)
Department of Sociology and Anthropology
University of Amsterdam
o.z. Achterburgwal 185
1012 DK Amsterdam
Netherlands

Dr Nicky Britten
(Professor of Applied Health Services Research)
Institute of Clinical Educaiton
Peninsula Medical School
Haighton Building
St Luke’s Campus
Exeter EX1 2LU
United Kingdom

Dr Chee-khoon Chan
(Associate Professor/Health Policy Adviser to Confederation of Malaysian Consumer Organisations)
School of Social Sciences
University Sains Malaysia
20 Lintang
Delima Lapan
11 700 Penang
Malaysia

Dr Chap Seak Chhay
National Institute of Public Health
Ministry of Health
Phnom Penh
Cambodia

Ms Aigli Chatjouli
(Researcher, Office of Bioethics and Communication, National Hellenic Research Foundation/PhD candidate,Department of Social Anthropology, University of the Aegean)
Vas. Sofias 47,
Athens 10676
Greece

Dr Komatra Chuengsatiansup
Director
Social Policy and Health Unit
Bureau of Planning and Policy
Office of the Permanent Secretary
Ministry of Public Health
Nonthaburi 11000
Thailand

Dr Anita Hardon
(Professor of Culture and Health)
Department of Sociology and Anthropology
University of Amsterdam
o.z. Achterburgwal 185
1012 DK Amsterdam
The Netherlands

Dr Linda Hogle
(Senior Research Scholar)
Center for Bioethics
Stanford University
701 Welch Road
Buidling A suite #1105
Palo Alto
California 94304
United States of America

Dr Kyra Landzalius
Dept of Science and Technology Studies
Göteborg University
PO Box 700
405 30 Göteborg
Sweden

Dr Margaret Lock
(Professor of Anthropology)
Department of Social Studies of Medicine
McGill University
3647 Peel Street
Montreal
Québec
H3A 1X1 Canada

Dr Happiness Minja
Council for Health Research for Development (COHRED)
11, rue de Comavin
1201 Geneva
Switzerland

Ms Norma Morris
(Research Fellow)
Department of Science and Technology Studies
University College London
Gower Street
London WC1E 6BT
United Kingdom

Dr Wiput Phoolcharoen
Director
Health Systems Research Institute
C/o Ministry of Public Health
Tiwanon Road
Nonthaburi 11000
Thailand

Dr John Pickstone
Professor of History of Medicine
Department of History of Science Technology and Medicine
University of Manchester
Mathematics Tower
Manchester M13 9PL
United Kingdom

Ms Linnie Price
Research & Development Support Unit
Peninsula Medical School
Bowyer Building

Torbay Hospital
Lawes Bridge
Torquay TQ2 7AA
United Kingdom

Dr Vololona Rabeharisoa
(Assistant Professor)
Centre for the Sociology of Innovation
Ecole des Mines de Paris
60 Boulevard Saint-Michel
75272 Paris cedex 06
France

Dr Radhika Ramasubban
Director, Centre for Technology and Social Change
14 Bandstand Apts
212A BJ Road
Bandra
Mumbai (Bombay) 400050
India

Dr Rayna Rapp
(Professor of Anthropology)
New York University
25 Waverley Place
New York
NY 10003
United States of America

Dr Emilio Sanz
Professor of Pharmacology
Department of Pharmacology
University La Laguna
Tenerife
Spain

Dr Tuula Vaskilampi
(Professor of Medical Sociology)
Department of Community Health
University of Kuopio
PO Box 1921
70211 Kuopio
Finland

Dr Charles Weijer
(Associate Professor)
Department of Bioethics
Faculty of Medicine
Dalhousie University
5849 University Avenue
Halifax
Nova Scotia
B3H 4H7 Canada