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Health Matters: A Social Science and Ethnographic Study of Patient and Professional Involvement in the Governance of Converging Technologies in Medicine

Final Report Summary - HEALTHGOVMATTERS (Health matters: A social science and ethnographic study of patient and professional involvement in the governance of converging technologies in medicine)

Executive summary:

The HEALTHGOVMATTERS project was a three-year (2009-2012) collaborative research project, which was co-funded by the European Commission as part of the Seventh Framework Programme‚ Science in Society' initiative. It was undertaken by a consortium of four institutions – Zeppelin University in Germany, the Interdisciplinary Centre for Comparative Research in the Social Sciences and the ICCR Foundation in Austria, and Goldsmiths' College in the United Kingdom. Over the course of three years, the researchers used rich social science and ethnographic methods, including textual analysis, interviews, and participant observation to explore the ways in which patients, family members, health professionals and researchers engage with the development, implementation and governance of predictive, diagnostic and therapeutic technologies and related medical knowledge.

Overall, the HEALTHGOVMATTERS project explored patients' and professionals' formal and informal involvement in governing the production and mediation of health and medical knowledge. Our interest was in exploring interactions amongst constellations of actors (patients, care-givers, health professionals, citizens, patient and professional organisations) who become involved in mediating and articulating definitions and lived meanings of health, illness and disease in the context of encounters with new health technologies and medical knowledge. As a result of our initial fieldwork, we came to focus on four conditions – epilepsy, migraine and autism in the UK and Austria and mitochondrial disease in Germany. All conditions are neurological, with a significant amount of research being conducted at the interface of neurology and genetics. Both epilepsy and mitochondrial disease have been characterised by interviewees as an "invisible disability", while at the same time scientific research (via genome sequencing and imaging technologies) strives to render aspects of the conditions more "visible". With regard to technologies, we focused on new imaging (predictive and diagnostic) technologies, such as forms of genetic testing, magnetic resonance imaging and EEG, computer implants, such as the vagus nerve stimulator, and new pharmaceuticals/devices, which are being developed and implemented in the fields of genetics and neurology - two key sites in which new technologies enabled by the synergism of developments in such core fields as nanotechnology, biotechnology, information technology and cognitive sciences are being integrated. Often referred to as "converging technologies", their integration in the area of medicine is viewed as holding the potential to vastly improve ICT capacity for medical data management and information generation and to provide the foundation for the translation of research knowledge into clinical trials and clinical practice. In the light of new developments, we were asking: How do patients and professionals at the experiential and institutional levels represent new diagnostic, predictive or therapeutic possibilities and make decisions regarding their development and use' Who produces representations of these technologies and related conditions and how and where do such representations circulate'

Our findings highlight the complexities surrounding the role of contemporary 'patient organizations' in Europe and the influence of state-mandated involvement of patient representatives in health and science governance, the social and medical meanings of emerging technologies of diagnostic precision, and the multiplicity of representations of medical technologies, health conditions, and related social and ethical issues in the public sphere. With regard to the potential policy implications of our findings, we draw out key points for consideration in instigating and supporting multi-stakeholder dialogue that could promote an engaged participatory governance framework. One of the severe setbacks for smaller and/or newer patient groups, patient organizations that hold alternative or counter- normative perspectives on the aetiology or management of a condition, and groups comprising members with various health concerns, is the lack of sustained resources, financial and health related, to participate in national and European networks, committees and policy development processes.

Project Context and Objectives:

Overview
The HEALTHGOVMATTERS project was a three-year (2009-2012) collaborative research project, which was co-funded by the European Commission as part of the Seventh Framework Programme‚ Science in Society' initiative. It was undertaken by a consortium of four institutions – Zeppelin University in Germany, the Interdisciplinary Centre for Research in the Social Sciences and the ICCR Foundation in Austria, and Goldsmiths' College in the United Kingdom. Over the course of three years, the researchers used rich social science and ethnographic methods, including textual analysis, interviews, and participant observation to explore the ways in which patients, family members, health professionals and researchers engage with the development, implementation and governance of predictive, diagnostic and therapeutic technologies and related medical knowledge.

Overall, the HEALTHGOVMATTERS project explored patients' and professionals' formal and informal involvement in governing the production and mediation of health and medical knowledge. Our interest was in exploring interactions amongst constellations of actors (patients, care-givers, health professionals, citizens, patient and professional organisations) who become involved in mediating and articulating definitions and lived meanings of health, illness and disease in the context of encounters with new health technologies and medical knowledge. As a result of our initial fieldwork, we came to focus on four conditions – epilepsy, migraine and autism in the UK and Austria and mitochondrial disease in Germany. Epilepsy, migraine and autism are considered to be 'relatively' common disorders in terms of population distribution, whereas mitochondrial disease is classified as rare. All conditions are neurological, with a significant amount of research being conducted at the interface of neurology and genetics. Both epilepsy and mitochondrial disease have been characterised by interviewees as an "invisible disability", while at the same time scientific research (via genome sequencing and imaging technologies) strives to render aspects of the conditions more "visible". With regard to technologies, we focused on new imaging (predictive and diagnostic) technologies, such as forms of genetic testing, magnetic resonance imaging and EEG, computer implants, such as the vagus nerve stimulator, and new pharmaceuticals/devices, which are being developed and implemented in the fields of genetics and neurology - two key sites in which new technologies enabled by the synergism of developments in such core fields as nanotechnology, biotechnology, information technology and cognitive sciences are being integrated. Often referred to as "converging technologies", their integration in the area of medicine is viewed as holding the potential to vastly improve ICT capacity for medical data management and information generation and to provide the foundation for the translation of research knowledge into clinical trials and clinical practice. In the light of new developments, we were asking: How do patients and professionals at the experiential and institutional levels represent new diagnostic, predictive or therapeutic possibilities and make decisions regarding their development and use' Who is producing representations of these technologies and conditions and how and where do such representations circulate'

The main overall objectives of the project were:

1. To examine the involvement of patient and professional organisations in the governance of health and medical knowledge production.
2. To explore patients' and professionals' experiences of obtaining information about and assessing the credibility of new technologies (including potential risks, benefits and expectations) and deciding whether or not to participate in new therapeutic experiments or the use of diagnostic and predictive technologies; and
3. To analyse emerging representations, communication and dialogue initiatives put forward and/ or undertaken by health and political institutions, civil society organisations, artists, museum curators and journalists with respect to the implementation and governance of 'converging technologies' in medicine.

The HEALTHGOVMATTERS project was organised into seven different work packages with specific objectives designed to feed into the aim of meeting the three main objectives. There were: 3 core research work packages (1-3); 2 'events/involvement' work packages (4-5); a dedicated analysis, synthesis and dissemination work package (6); and a project management work package (7). Each of these work packages commenced at staggered dates during the first reporting period. Each work package comprised particular activities (tasks), such as updating literature reviews, developing interview guidelines, conducting fieldwork, data analysis and the completion of a main report.

The specific objectives of the individual work packages were as follows:

- WP1: To establish the role of lay, patient and health professional organisations in lobbying, with respect to the mobilization of resources, but also, as importantly, symbolic representation and publicity.
- WP2: To examine the experiences of patients and professionals with new "imaging" (predictive-diagnostic) technologies, computer implants, and new pharmaceuticals/devices. The objectives were to identify forms of and barriers to informal and formal practices of governing novel health and medical knowledge within health care encounters.
- WP3: To map and analyse the public representations and communication initiatives regarding the governance of converging technologies in medicine
- WP4: To facilitate the exchange of experiences and networking amongst people engaged in health research and policy/governance studies or advocacy regarding converging technologies or emerging technologies identified as comprising elements of convergence.
- WP5: To encourage and facilitate conversations about medical technologies governance amongst people who may not be directly involved in decision-making regarding their implementation or use in specific contexts.
- WP6: To facilitate extensive integrated analysis and promote the on-going and timely dissemination of research findings and practice and policy recommendations.

As a starting point for our research, we distinguished between professional and patient organisations. Professional organisations were defined to include medical associations and associations bringing together representatives of the medical professions and/or the pharmaceutical industry working directly or indirectly with research labs, centres and organisations in the field. Patient organisations were defined as including organisations that were established to represent patient interests, including self-help groups.

The project addressed the plurality of governance of medical knowledge, by which we mean the different forms of knowledge production, reproduction and use within the spectrum of, on the one hand, face-to-face relationships and communication between patients and medical staff (e.g. doctors and nursing staff) and, on the other hand, the explicit interventions of patient and professional organisations through lectures, information material and position papers on new medical knowledge and the application of new technologies. In this report, we will highlight some of the work that we undertook in the three core research streams and our findings. First, we will outline a few distinguishing features of the project that were key to meeting the proposed objectives.

Multi-sited Ethnographic Approach
The HEALTHGOVMATTERS researchers followed a multi-sited approach to ethnographic research (Marcus 1995; Franklin 1995), which supports the continuous development of the research project in conversation with the analysis of emerging data. We also engaged in what is referred to as ´constant comparative` analysis. Thus, while the fact that we conducted the research in three different countries presents one obvious unit of comparison – the country unit can be seen as a proxy for different health care management and social insurance systems, as well as different modes of funding and research oversight — it is one axis of comparison among many others. We were also extremely interested in exploring the commonalities and differences between the experiences of people of different genders and ages, but also knowledge about and perspectives on technologies or therapies related to prediction, diagnosis and on-going care.

Overall, we conducted over 142 semi-structured and/or in-depth narrative interviews and carried out participant observation in labs, patient organization meetings, scientific steering committee meetings, informal gatherings of scientists, clinicians and patients, video EEG monitoring units, rehabilitation trade fairs, conferences, theatre pieces, performance projects and awareness-raising events.

Integrated Research – Research Subjects, Researchers, and Knowledge Production
The multi-sited methodological approach that was undertaken as mentioned above meant that the research was conducted at various sites of knowledge production and governance, with the researchers following 'leads' and 'threads' of ideas and issues as raised by the research participants. This especially informed WP3, as participants directed the researchers to various events that were taking place. Importantly, as researchers we also introduced a variety of public representations to the participants, given that our research took us beyond local sites. We developed a specific work package to facilitate exchanges with interested parties and the so-called 'general public' at key intervals in the project. Using art and representations as the common thread, events were designed which both presented initial findings from the project and acted as a space for discussion about the issues that were being raised. The report on these events provides details of the interactions that ensued. Following the events, reflection and analysis informed some of the directions in which the research went next. For example, in Germany, the lack of participation at an open film and subsequent dialogue with a parent of a child affected by mitochondrial disease, led the research to a focus on the invisibility of mitochondrial disease and also the politics of attempting bilingual events. A subsequent event was organized which specifically addressed parents of children with neuromuscular conditions. Organized much more as a conversation around the initial findings, this event led to a productive understanding of the links and disconnects between health and social services in Germany and the decision-making processes regarding enrolling children in new therapeutic or diagnostic studies. The responses here were used to fine-tune questions being asked in subsequent narrative interviews. Numerous presentations made to patient organizations often validated the representations of findings thus far. Questions that were posed were often integrated into the next phase of the research. Very often leaders of the patient organization made suggestions as to which events would be interesting to attend and extended invitations to those that they were organizing. The events held in the UK and Austria both had very good turn outs. The event in Austria provided input into both the focus of WP2 and WP3 in relation to epilepsy, offering many ideas about the contemporary frameworks of neuroimaging and notions of neurodiversity. In the UK, the event sparked discussions that were then integrated into the analysis of the data for WP3, specifically about the stigma that individuals with particular diseases face, and the role of self-representation as a means of self-advocacy and knowledge production.

Attention to Gender and Generation
In both fieldwork and analysis, specific attention was paid to the visibility of women and men and adults and children within representations of emerging and converging technologies. We were interested in how individual gendered subjectivities, and roles in relation to decision-making on behalf of others, may influence involvement in patient organisations, professional organisations, and governance initiatives. Additionally, while much attention has been placed on decision-making and experiences of adults, less visible, perhaps, are the emerging cases of clinical trials and diagnostic or predictive testing situations in which children are the subjects. The analysis of the interview material and the narratives reveal gender specific aspects with regard to participation in governing measures, the perceptions of a condition and experiences with related diagnostic and therapeutic technologies. However, numerous other variables, such as education, cultural background, class, linguistic capacities and generation are also extremely important. In our discussion, we focus on gender and generation as they were two dimensions that we initially sought to explore. Our project was strongly ethnographic, heavily focusing on the narratives of experience. Gender seemed to make a difference with regard to processes of achieving diagnoses, the lived experience of a condition in relation to its gendered status, and reproductive decision-making in the face of emerging knowledge. Gender, was however, not uniformly associated with leadership of self-help/patient organizations, and differed as an axis of difference in the three countries and in relation to the specific conditions in focus. In the body of the report, we will highlight some of the ways in which gender and generation became apparent through the stories of individuals we interviewed.

Comparative Approaches in EU Research
In undertaking the HEALTHGOVMATTERS project, we emphasized a "constantly comparative" approach, whereby comparative analyses were carried out throughout the project along the lines of condition, gender, generation, political context, language, implementation of governance frameworks, legislation, etc. in dialogue amongst the researchers. Outlined in our proposal and description of work as a methodological approach, this meant that what we explicitly proposed to do contrasted with the approach taken in many European projects, where the comparison is made using the country level as the dominant unit of comparison. In the design and implementation of HEALTHGOVMATTERS, we instead worked collaboratively to help elicit finer points of comparison at a much more local level. This then helped us in our analytical discussions to understand some of the ease and barriers to participation outside of a regional or national system. Thus, as planned, the outcome of WP1 includes a synthesis report that compares and contrasts the various forms of organizations that are becoming involved in the governance and production of medical knowledge and medical technologies, highlighting differences in structural forms in the UK, Germany and Austria. WP2 took a much more solid ethnographic approach and its outcomes are represented in the form of three mini-ethnographies. The analysis within these is informed by collaboration amongst the researchers. The differences and similarities that were noted throughout the fieldwork pushed the research in each country in new directions. Most notably, the interesting details were with regard to the diagnostic experiences and development of technologies in relation to the condition's visibility and 'disabling' effects. Furthermore, the commonality and rarity of the conditions, or their perceptions thereof, also impacted on the level of research funding and interest in them. As knowledge within the fields of health and science, as well as health and science governance, becomes increasingly mobile – along with scientists and patients – it will be extremely important to develop approaches to European research that can attend to such mobility. Such research will contribute to the European knowledge sphere by exploring practices of harmonization but also contestation outside of set frameworks of analysis based on geo-political boundaries.

Project Results:

The research for the HEALTHGOVMATTERS project was organized in three core streams. As described above, as a starting point for our research, we distinguished between professional and patient organisations. Professional organisations were defined to include medical associations and associations bringing together representatives of the medical professions and/or the pharmaceutical industry working directly or indirectly with research labs, centres and organisations in the field. Patient organisations were defined as including organisations that were established to represent patient interests, including self-help groups. Over the course of our research, the terminology of patient organization or professional organization proved to be in many ways problematic, especially given the professionalization of patient organisations over the past couple of decades. On the other hand, this language was also useful in terms of thinking through and addressing the transformations to the goals of an organisation and their primary purposes. The visibility of those organisations naming themselves as 'patient organisations' is also important to note in relation to formal processes for identifying suitable 'patient representatives' for inclusion in decision-making processes at various levels and with regard to patient recruitment campaigns by pharmaceutical or medical device industry representatives.

In the following pages, the main findings from the three core research streams of the project are described, followed by a discussion of the policy implications emerging from the findings as a whole.

Stream 1: Patient and Professional Organisations

This stream of research focused on the involvement of lay, patient and professional organisations in discussions concerning the governance and implementation of medical technologies and the production, mediation and circulation of medical knowledge. We were attempting to explore questions such as: How do various organisations produce and mediate knowledge about a condition, as well as about new technologies and research or therapy directions. Which organizations are part of contemporary health and science governance'. The design of this first research stream was intended to provide input into the further development of our research project and, especially, to establishing contacts and identifying the areas of research that would become the focus of further intensive work. Over the course of the initial months of research, specific speciality areas with regard to clinical care and research and specific conditions were identified by the three research groups. In the UK and Austria, the research came to focus on epilepsy, migraine and autism, which are considered to be common neurological conditions, the genetic basis to which is varied and contested. In Germany, the research came to focus on mitochondrial diseases, a set of rare neuromuscular diseases, which are understood to primarily relate to underlying genetic differences.

Stream 2: Patients' and Professionals' Individual and Familial Experiences

The focus of this stream of our research was on the individual narratives of patients, their families and health professionals. We set out to explore the experiences of people who are encountering medical technologies and/or being asked to participate in medical research, and who are making various decisions in direct relationship to their own care, their practice as a professional (mostly as clinicians or researchers, or often clinician-researchers), or their role as someone directly involved (e.g. as a parent, child, or friend) in the care of someone else. Given the complexities of distinctions between patient and professional organizations described above, it is not surprising that the concept of 'patient' is also complex. We would suggest that the term "patient" in this project can be better understood in terms of one who is affected by a condition (in potentially multiple ways), one who encounters a technology/therapy, or one who moves in and out of what might be conceptualised as "patienthood". Retaining the term 'patient' in our writing and presentations (at the same time as pointing to the diversity of its meaning) in many ways reflects the ways in which individuals we met were mobilizing and lobbying for resources in line with their identities as 'patients' – people who require access to appropriate health services and who are invested in medical research and the development of new diagnostic and therapeutic technologies.

Stream 3: Public Forums of Information Exchange, Communication and Dissemination

In this stream of our work, we explored public representations of and communication initiatives about specific conditions, the broader fields of neurological and genetic knowledge, and converging technologies in medicine that occurred between September 2009 and December 2011. We paid attention to the work of health and political institutions; civil society organisations; artists (visual art, film, dance, theatre, etc.); exhibit curators (science museums, memorial museums, art exhibits, etc.); and journalists (mainstream, as well as alternative). We aimed to develop a better understanding of the diversity of ways in which health and medical knowledge is presented (the landscape of representations), and the manners with which complexity, especially in the face of increasing technological convergence, is translated in visual, audio and textual form to non-scientific audiences. Furthermore, we sought to understand who exactly is involved not only in the consumption, but also the production of representations destined for 'the public', who may be conceptualized as the 'general public' but in many ways are already distinct publics with particular investments in acquiring new knowledge in a particular field. Importantly, we sought to explore and understand the 'behind the scenes' processes and the multiple and intersecting factors that shaped the end form of such public representations and communication initiatives.

Axes of Difference: Gender and Generation

As increasing attempts are made to understand the relationship between science and society, and especially, the participation of citizens in the production and governance of medical knowledge and medical technologies, the differentiated experiences of people according to diverse life situations is important to pay attention to. In the design of this project, gender and generation were recognized as important axes of difference to be considered in the development of new health and medical technologies and the study of their use. Research has illustrated the ways in which technological developments in medicine have impacted differently on the bodies of women and men, shaping their experiences with technological innovation. For example, Margaret Lock and Patricia Kaufert in their edited volume Pragmatic Women and Body Politics offer key examples of the ways in which women have mediated knowledge generated by emerging technologies, locating new information within the contexts of their everyday life experiences.

Methodology
Gender (and also sex) and generation were taken into account throughout the HEALTHGOVMATTERS project in key ways:

Choice of conditions: The conditions on which we focused are represented in medical and popular discourse and public spaces in gendered ways. Migraine is often conceived of as a "female" condition. Autism and epilepsy are often related and underpinned with male narratives and often male characteristics with both conditions being represented as being at the interface between genius and mad. In the media, they are often described as controllable brain diseases associated with the concept of "neurological diversity". This is not the case for migraine that is simply reduced to the dimensions of pain and life style.

Findings
It is important to note that throughout the project we were interested in the governance of medical knowledge production and medical technologies. Firstly, we explored the ways in which patient and professional organizations implemented formal governance measures and participated in informal practices of governing the circulation of medical knowledge. Secondly, we examined the narratives of professionals, patients and family members with regard to medical knowledge about the condition in focus and their encounters with medical technologies involved in the production of this knowledge. Thirdly, we addressed the processes of producing contemporary public representations of both medical technologies and the conditions in focus in our research.

Gender
Gender is one of many axes shaping the ways in which converging technologies and medical research are governed and represented in the diagnosis and treatment of neurological conditions at different levels. The analysis of the interview material and the narratives reveal gender specific aspects with regard to participation in governing measures, the perceptions of a condition and experiences with related diagnostic and therapeutic technologies. However, numerous other variables, such as education, cultural background, class, linguistic capacities and generation are also extremely important. In our discussion, we focus on gender and generation as they were two dimensions that we initially sought to explore. Our project was strongly ethnographic, heavily focusing on the narratives of experience. The ways in which people experience and engage in these processes of governing both medical knowledge and medical technologies is individual, difficult to objectify and best assessed by pointing to subjective narratives and epistemologies. In the following pages, we will highlight some of the ways in which gender and generation became apparent through the stories of individuals we interviewed.

Austria
With regard to personal involvement and participation in both medical research and governing initiatives, such as in the form of self-help-groups and patient organizations, in Austria there were no gender specificities found regarding the willingness to engage in medical studies. Both, male and female interviewees look at the involvement in such studies equally: some were in favour, some were against the involvement. Gender does not seem to make a difference in this respect. What matters is rather related to the different diseases and the severity of the condition: people with epilepsy or migraine who are suffering a lot and are desperate to receive an appropriate diagnosis and treatment show high willingness to participate in any study that could help to "control" the pain or the seizures.

UK
In the UK, within the research among people with epilepsy, a condition which manifests equally among men and women, it was found that there were fewer instances in which gender arose as a significant dimension of diagnosis and experience. Epilepsy was a condition in which the social aspects of the condition, rather than the medical aspects of the condition were impacted by gender. Gender had very little impact on patient's access to treatments and treatment technologies. Migraine, on the other hand, which affects women much more often than men, emerged as a condition in which people expressed their experiences through gendered terms. For instance, people with migraine felt that their pain was not taken seriously.

Germany
In Germany, the focus on mitochondrial disease, which is understood to be progressive and degenerative, elicited a number of ways in which the gendering of work and responsibilities of caring influenced the gendered engagements with patient organization work, medical knowledge and medical technology governance, and experiences with diagnostic processes. Throughout the research, the rarity of mitochondrial disease, as well as its 'invisibility' in many situations seemed to impact on the gendered experiences of individuals living with it. The symptomatic expression of mitochondrial disease most often includes weakness. Within binary structures of gender, in which strength is gendered masculine, the progression of the condition is often experienced by men as compromising their masculinity and their gendered roles as partners, husbands and parents. In Germany, the diagnostic narratives of a number of men noted the point at which they were retired – i.e. they were told that they could no longer go to work – as a very difficult time in their lives. In a context in which men are expected to provide for their families, but also in which men's work outside of the home is highly valued, being unable to do so compromised their sense of self.

Generation
Generation has two key connotations in our research. First, we were interested in incorporating an historical perspective into our research in order to understand the experiences of patients and professionals with the governance of medical knowledge and technologies over time. Individuals who are active in research and who are leaders of patient organizations have often accrued experiences that can be linked to different paradigmatic understandings of conditions. While many are having experiences with technologies in use now, their narratives may articulate their perspectives of new technologies in relation to what was in use before. This then offers an understanding not only of novelty, but also of how incremental changes are perceived and whether these warrant special attention. Secondly, generation has to do with age, familial relationships and parenting. Given that there is increasingly a wish to include children in research and for technologies to be developed in child-specific ways, we wanted to pay attention to the stories that people might tell about their own diagnoses or experiences in relation to their children, the ways in which their children encountered and/or participated in medical knowledge production, and what role parenting and reproductive decision-making might play within these fields. In the following pages, we will highlight some of our findings.

Austria
With respect to generation, our research in Austria was limited due to legal and ethical regulations. For conducting interviews with patients under 18 years in clinics a special permission by the responsible ethics committee is required.

UK
Generation emerged as an important theme among interviews with migraineurs, especially regarding the way they came to learn about their condition. Migraine is believed to have a strong genetic component. Due to this, one of the first places people would have encountered migraine was within the home. Both men and women with migraine were able not only to identify/diagnose their symptoms by observing the experiences of people within their family, but they also learned skills as to how to manage their condition and techniques to treat it. More often than not, people told stories of how they watched their mother, or grandmother suffer with migraine attacks, and when they themselves started experiencing symptoms, they were able to identify what was happening. In cases where the migraineurs developed symptoms during childhood, it was with the help of their parents that they came to identify their symptoms as indicative of migraine.

Germany
Reproductive decision-making and parenting appeared as strong narratives within the interviews in Germany. Very often, amongst the individuals interviewed, reproductive decisions impacted on the family members rather than on the affected individuals themselves who were often already parents. While there is a significant amount of work done on prenatal testing, mitochondrial disease amongst those interviewed complicated the normative narrative of generational genetics which is more prevalent in the public view. An adult is tested for a genetic mutation prior to conceiving a child or the fetus is tested prior to being born. One of the families interviewed highlighted the intergenerational context of mitochondrial disease. In this case, a woman with a five year old boy gave birth to a girl who was diagnosed with mitochondrial disease in the first few days of life.

Conclusions regarding axes of difference
The HGM research considered the ways in which gender and generation were encountered by patients, especially in regard to their experiences of getting a diagnosis as well as their lived experience of their condition. While both gender and generation were important considerations throughout, the ways and extents to which these elements were encountered differed greatly according to the conditions. Across all conditions there was a significant amount of stigma attached to bodily and cognitive differences.

Relation of results to project funded in the same theme - EPOKS

HEALTHGOVMATTERS had a unique approach in that it explicitly proposed to carry out research employing for the main part a different unit of observation than many other European projects. Most European projects use as a unit of comparison the national level. The design and implementation of HEALTHGOVMATTERS instead suggests finer points of analysis at the micro-level as a means of generating knowledge that is relevant to European societies. This allows for a deeper analytical understanding of facilitators and barriers to the participation of patients, patient organizations and professional organizations in various modes of producing and governing medical knowledge and technologies. Where appropriate and as indicated by the data, we conducted comparative analyses at the national levels. This is particularly true for the report on 'Patient and Professional Organization Involvement in Governing Converging Technologies in Medicine' (WP1). This report contains a synthesis comparison of the various forms of organizations involved in the governance and production of medical knowledge and medical technologies and highlights structural differences in the in the UK, Germany and Austria that seem to shape the roles that patient and professional organizations play.

Two projects - HEALTHGOVMATTERS and EPOKS-European Patient Organizations in Knowledge Society - were funded in response to the call for proposals related to Topic SiS-2008-1.2.1.3 Governance in the production of health and medical knowledge. One of the dissemination activities, an international conference on the role of patient and professional organizations in governing medical knowledge and technologies in Europe facilitated the exchange of knowledge amongst scholars and activists involved with a number of European and international projects (including EPOKS) and health-related organizations (detailed below in our account of dissemination activities). Here, we would like to take the opportunity to highlight some of the combined knowledge resulting from the funding of two projects with distinct approaches. Given their related foci on health-related civil society involvement, both projects were mentioned in a recent article in the European Journal of Public Health.

Both the HEALTHGOVMATTERS and the EPOKS projects aimed at analysing the forms and conditions for patients' involvement, but with different foci and methodologies. The entry point of the HEALTHGOVMATTERS project was the focus on technological development and converging technologies, assuming that patients' organizations, individual experiences and public representations of these technologies are central to the understanding of various aspects in the development of health and medical knowledge. HEALTHGOVMATTERS employed a solid ethnographic approach to meet its research objectives. As outlined above, the foci emerged through the process of the initial research and fieldwork. This allowed the researchers to identify pressing issues and developments that were emerging. HEALTHGOVMATTERS looked at the forms of patients' and professionals' involvement on three different levels:

- the level of patients' and professionals' organisations,
- the level of patients' and professionals' experiences, and
- the level of public representation based on an ethnographic and qualitative approach.

HEALTHGOVMATTERS focused on neurological conditions that are difficult to diagnose and to treat and that, as such, pose a specific challenge for the development of new health and medical technologies and the representation of and communication about both the conditions and the technologies.

The EPOKS project aimed at conducting a comparative analysis of "the conditions of production and diffusion of lay knowledge, and at its statute [and] the role played by the European coalitions of patient and user organizations in the design of new modes of knowledge and know-how governance, allowing them to promote their involvement in the fields of medical and health research". EPOKS undertook a series of case studies, focusing on organizations related to: Rare and/or orphan diseases, Childbirth, Alzheimer's and, ADHD. The underlying logic for selecting the organization was based on the recommendation of the MEDUSE project and the differentiation between organizations according to "the proximity of patient/user/civil society organizations and movements to biomedical knowledge and practices […] and the stability of the web of expertise and issues."

The combined knowledge resulting from both projects is relevant to the future support of patients' and organizations' involvement in governance initiatives related to health and science. The results of the EPOKS project are very relevant to the HEALTHGOVMATTERS outcomes related to the focus on patient and professional organizations and the involvement of lay people, patients' organisations and professional organisations in discussions concerning the governance and implementation of new imaging technologies (predictive and diagnostic), computer implants and new pharmaceuticals and devices. EPOKS addressed the "different forms of action inspired by various sorts of activism (that) may co-exist and be articulated in multiple ways". HEALTHGOVMATTERS focused on the ways in which various organisations lobby for or against the development of new technologies and research or therapy directions and came to the conclusion that a differentiated analysis of these ways is necessary given the different types, forms and objectives of patient organisations and professional organisations. More specifically, our results suggest that "the initial categories of patient and professional organisations need to be reframed in the context of a general shift toward professionalisation and an increase in the knowledge base of these organisations. In this respect, the initial categories need to be rejected in favour of the concept of a continuum and against the background of hybridization."

The results of both HEALTHGOVMATTERS and EPOKS highlight the interest of patients' organizations in new scientific findings and research initiatives, their important function as diffusers of new knowledge and their active involvement in stimulating the debate on new technologies. The degree to which the different groups take action varies significantly, especially in those areas where medical treatment is still contested, such as is the case of autism where behavioural therapy is important. Still, in this area, one can identify a tendency towards a broad acceptance of new technologies, even though most of these, at least in the field of neurology, are still in the testing stage. This is particularly true in the field of neurological conditions where stigma remains an additional burden to sufferers and their families. The scientific and objectified representation of a condition and the reference to new developments of health and medical technologies provides an important source for communicating and "accepting" the conditions. We refer to this important finding of "scientization" in relation to the work of organizations, public representation of neurological conditions and the epistemologies and narratives of individual and family experiences. This finding relates closely to "evidence-based activism" in the EPOKS project for which three criteria were identified:

- patients' organizations contribute to the shaping of an expertise,
- social scientists play a crucial role as they engage in a reflexive collaboration with stakeholders and patients' organizations and thus contribute to their formalization, and
- "evidence based activism amounts to collective investigation, including all concerned groups in the exploration of diseases and their consequences."

Potential Impact:

The HEALTHGOVMATTERS project was fieldwork-intensive, employing rich multi-sited ethnographic methods. There are two sets of anticipated outcomes of the project. First, with respect to research in interrelated disciplinary and interdisciplinary fields such as medical sociology and anthropology, science studies, and science and health policy analysis, the findings from the project have resulted in:

1. The completion of much needed ethnographic research on experiences with converging technologies at the interface of medical research and biomedical practice;
2. The establishment of a set of key examples of emerging forms of representation and dissemination about the use of medical technologies in health research and care, as well as their relationship (or distance) from particular health conditions;
3. The implementation of an integrated approach to theoretical analysis and policy- relevant research pertaining to contemporary interfaces between clinical therapy and research practice and governance, which addresses the complexity of lived experience, differential policies and professional practice.

Policy Implications Emerging from the Research Findings

One of the objectives of the 2008 Science in Society work programme of the European Commission within which this project was funded was: 'to encourage greater public engagement and promote the participation of citizens and civil society organisations in research and science policy-making.' Our project approached this objective in a three-fold manner, attempting to understand the multiple forms that engagement and participation might take. We wanted to gain a sense of the formal and informal means by which people are involved in health and science governance. What forms does involvement take at the institutional and organizational level' What about those individuals who will be directly affected by medical research – and what is and is not funded'

Introduction: The implication of the governance concept
Our usage of the term 'governance' refers explicitly to processes of regulation, monitoring and decision-making that differ from those implemented top-down by governments. While the governance of health and science may still be quite strongly located within the domain of policy-makers, there is increasing pressure to democratize science and the policy-making process. The concept of 'governance' implies a multi-stakeholder approach. It is based upon the assumption that all stakeholders are able to take up their responsibilities. As we have explored in this project there are numerous barriers to doing so, faced especially by people affected by chronic, stigmatized and possibly isolating conditions. There is, however, also a strong movement toward action, the improvement of health and science literacy among non-scientist citizens, and formal inclusion of patients and patient representatives in governance initiatives by the state and regulatory institutions.

Unlike in traditional policy-oriented studies, the implications of the results of the HEALTHGOVMATTERS study do not just address the political system, but all stakeholders involved. Hence, we elaborate on 'policy implications' rather than speaking about 'policy recommendations'. There are, however, direct implications for policy-makers. Policy-makers hold particular responsibilities:

-Legislation: Setting an appropriate framework and being aware of social inequalities in the health sector
-Incentives-disincentives: Establishing suitable funding programmes to meet the challenges faced by individuals with chronic or rare diseases and currently under-funded conditions
-Persuasion: Establishing and supporting awareness-raising campaigns, helping to not only draw awareness to the need for health resources and medical research, but also to the need to de-stigmatize disabilities and fluctuating states of health

The responsibilities of other stakeholders are more diverse:

-Patients and relatives: Gaining an understanding of health, illness and disability and participating in self-care when possible. Taking part in discussions about what is necessary with regard to health care reform and science policy and offering expertise and challenges based on experience.
-Self-Help groups and professional organisations: Providing adequate support, participating on research committees, contributing to science and health policy discussions
-Doctors and health-care professionals: Professionalism and empathy. Interactions with other stakeholders.
-Research and Industries: Appropriate research and corporate social responsibility
-The Media: Knowledge-based reporting

Research and Technology: Private Research and Public Responsibility
The recent budgetary restrictions have had an impact on the governance of medical knowledge and have health implications. This finding is far from being trivial. Research in the medical field is becoming increasingly independent from industry. As medical research is costly, the industry stakeholders seem to concentrate on more widespread illnesses. This goes at the expense of chronic conditions and rare diseases, as public funding becomes more and more scarce. On the other hand, much of the research undertaken is focused on mere technology development. While we have noted that a high number of participants in this project placed significant value on the possibility that future generations would receive quicker diagnoses and that there is an increasing degree of diagnostic precision, just as high a number expressed certainty that a 'curative therapy' is nowhere in sight. What often remains under-discussed is the lack of research – and funding for research – into therapeutic interventions, especially for conditions which do not affect a high proportion of the population.

We would suggest that this situation is exactly a case that calls for a multi-stakeholder approach and the efficient use of public money:

-Priority setting for public health policy must include all relevant stakeholders. Specific attention has to be given to research on chronic and rare diseases. There is room for improving the use of the knowledge of patient organisations, of self- help groups and of professional organisations. Their knowledge is based upon interactions with individual patients and their experiences with new technologies, as well as doctors and other medical staff.
-The funding of these organisations is insufficient and does not facilitate the full benefit of their knowledge and experience being taken into account. Many of the organizations are volunteer efforts, lacking sustainability, especially due to the health issues faced by leaders. Increasingly, the organizations have to turn to industry sponsorship, which might decrease their impartiality.

We would argue that research and technology development in the health sector need public support:

-There is a need for the efficient use of public money.
-Setting the framework for a dialogue between all stakeholders should be encouraged and the dialogue should influence research and research policy decisions.
-European health and research policies should encourage the exchange of best practice models and better coordination of national research programmes.
-Whilst ensuring data protection and privacy, data related to the safety of devices, as well as 'social risks' must become available EU-wide, to all stakeholders, in order to ensure the patients' well-being.

Awareness-raising: The Key to Success
The value of awareness-raising activities was highlighted by the various stakeholders who participated in this research. For patients, awareness-raising activities make a condition, and very often experiences similar to their own, visible to the general public. In cases of rare conditions, they may also make a condition visible to an undiagnosed individual or may be the first opportunity an individual has to acquire more knowledge about their condition. For scientists and doctors, participation in awareness-raising campaigns has, in a number of contexts, become integrated into their professional practices. The shape that this participation may take is quite diverse. We interviewed clinicians who were extremely involved in medical associations with strong ties to the larger patient organizations in their field. We also interviewed scientists and doctors who became involved in public involvement projects, supporting citizen education about general health and science issues or specialized topics. Awareness-raising activities over the past few decades have also shifted the balance of authority over health and medical knowledge. This creates a platform, but also a need, for the development of new relationships and dialogues between patients, doctors and scientists about the diagnosis and management of conditions and, ultimately, the production of health and medical knowledge. Some of the key points that we have noted are:

Patients:
-There is uncertainty and ambiguity among patients.
-On the one hand, the expectations towards the new technologies are high; on the other hand, some patients feel like "guinea pigs".
-The expectations of the therapeutically-induced impact on the improvement of individual health are often exaggerated.
-The traditional doctor-patient relationship is somehow fuzzy and the authority of doctors' knowledge is questioned by many patients.

Doctors and healthcare professionals:
-There seems to be a gap between the younger and the older generation of doctors: For diagnostic purposes, the older generation of doctors are more sceptical towards the new technologies and rely on their experience; the younger generation is relying much more, and sometimes mostly, on these technologies.
-In a number of cases, the latter seem also to ignore the psychological aspects of the doctor-patient relationship: Their self-understanding is more a managerial one.
-A more balanced approach seems to be necessary.
-Awareness-raising is a challenge for all stakeholders involved
-Health authorities, in close collaboration with the stakeholders, have to play a role in awareness-raising.
-Patients with chronic or rare diseases are confronted with prejudices on the one hand, with a lack of understanding of their needs on the other hand.
-Prejudices against chronic and rare diseases vary across cultures.
-Training of doctors and healthcare professionals should increase patient-centred treatment.
-The understanding of the patients' needs increases the autonomy of the patients.
-Research is needed to define target audiences and topics for the awareness raising campaigns.

The role of the Media and of the Arts: Increasing the public understanding by knowledge and emotions
Print and broadcast media reach a high number of the general population and, thus, have a significant role to play in the circulation of sound medical knowledge, but also in raising questions concerning this knowledge, the implementation of technologies, and the management and public perception of certain conditions. In many ways, the media are knowledge gate-keepers. The selection of the topics on which they report often depends on the personal assessment of each journalist, and very often their editorial offices, about what is currently considered to be topical or 'sexy'. We have made the following observations:

-There is room for lobbying on the side of the patient organisations, self-help groups and professional organisations for coverage of particular conditions. Institutions of journalism education could become targets of the lobbies as well.
-Public health authorities have their role to play as well. Advertising in the media and PR- campaigns of the public health authorities should be part of the awareness-raising campaigns as well. This is particularly important for rare and/or stigmatized conditions that are under-represented in media reporting.
-Exhibitions seem to have an under-estimated role in the diffusion of medical knowledge. The examples reported in the study show that, whilst mostly presenting artefacts, they have a wider audience than any other communication media and are able to increase understanding about the functioning of, for instance, the brain or the general nervous system.
-Art, and especially self-representations and participatory projects, seems to hold the possibility to challenge the authority of 'scientific' representations of conditions, address social and ethical issues related to emerging technologies or medical research and therapeutic interventions, and is often accessible to a broader audience due to transformations from one medium to another and the increasing use of the internet for dissemination purposes.

Future Research Questions
A number of questions emerged over the course of this project, which are deserving of future research. Many of these were addressed in the presentation of the project's findings at a seminar held in the European Parliament in May 2012. Here we specify a few of them:

Main Dissemination Activities

Citizen Studies Workshop Series
The Consortium organised a series of what we referred to as 'citizen studies' workshops over the course of the project. The workshops had a unified aim of facilitating public engagement with science and stimulating conversations around the governance of medical technologies amongst people who may not be directly involved in decision-making regarding their implementation or use in specific contexts. Additionally, this series of workshops was conceptualized as a means of experimenting with different possibilities for 1) moving on- going social science research into public space throughout the course of the project; and 2) incorporating the outcomes, feedback and questions posed during the events into the further research and analysis of the project.

International Workshop
The Consortium organized an international workshop, entitled The Role of Patient and Professional Organisations for EU Health Governance, which took place in Brussels, September 21-22, 2010. The objective of the workshop was to bring together representatives from patient and professional organizations, representatives of civil society organizations, as well as researchers working in the fields of medical sociology and anthropology to exchange views about how new knowledge and emerging technologies are impacting on medical research, clinical care and stakeholders' mobilization. Organized by the ICCR and hosted by the Austrian Mission in Brussels, the workshop featured presentations by 12 speakers from diverse organizations. The workshop provided a solid overview of emerging issues in the governance of health care and medical research, especially with respect to the role of patient organizations and their interaction with professional organizations and the medical establishment.

Final Conference
A final conference entitled "Health Governance Matters: How to Govern Medical Knowledge, Converging Technologies and Neurological Disorders" was held at the European Parliament on May 16. 2012. This event was organized at the invitation of MEP Angelika Werthmann, whose office also co-hosted the event. The conference was conceptualised to inform policy makers, representatives of patient organizations, scientists, and relevant stakeholders about the results of the HEALTHGOVMATTERS project. One of the core aims was to shed light on a highly relevant issue, namely the production and governance of medical knowledge and related implications for science, policy, and health care, as well as patients and their families.

Other Presentations and Networking
The HEALTHGOVMATTERS project was designed as a multi-sited, qualitative study, which emphasized a "constantly comparative" approach, whereby the "units" of comparison were not fixed. This enabled comparative analyses along the lines of condition, gender, generation, political and cultural contexts, language, styles of implementing governance frameworks, legislation, etc. Approaching the fieldwork with an ethnographic perspective, and thus allowing what was going on during the time of our research to shape both the research questions and foci, opened up numerous possibilities for nuanced and comparative discussions amongst ourselves and with the individuals who have participated in the research in various ways.

Members of the consortium were active in disseminating preliminary findings and participating in informal and formal exchanges about the project and the cross-thematic issues that it addresses. One of the key successes of the project involved the intensive networking with various patient and clinician groups that took place throughout the project and the presentations of the preliminary results of the research to various audiences within the context of the project's lifetime. This enabled the researchers to receive feedback on the findings while fieldwork was on-going and analysis was taking place.

Publications

Main Research Reports
The main reports from each stream of our research will be made available for download from the HEALTHGOVMATTERS website. These reports provide detailed accounts of the research specific to the conditions and technologies on which we focused. The voices of many affected individuals, representatives of patient organizations, self-help groups and medical societies, scientists, and doctors are to be found within these pages. Additionally, these reports include our analyses and reflections on numerous public representations and communication initiatives. Each of the main reports was based on a series of working papers, distributed amonst the consortium and informing the larger analysis.

Brief Synthesis Summary Report
As part of our dissemination work package, we completed a brief synthesis of the research findings in accessible language to be disseminated to interviewees and made available on-line.

List of Websites:
http://www.healthgovmatters.eu