HEALTHGOVMATTERS

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

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 Obiettivo del progetto (Objective)

'HealthGovMatters explores patients' and professionals' formal and informal involvement in governing the production and mediation of health and medical knowledge. We use rich social science and ethnographic methods, including interviews and participant observation, to address forms of engagement with predictive, diagnostic and therapeutic technologies. Our interest is in exploring interactions between constellations of actors (patients, care-givers, health professionals, citizens, and patient and professional organisations) who become involved in mediating and articulating the definitions and lived meanings of health, illness and disease in the context of encounters with new health technologies. We will focus on new imaging (predictive and diagnostic) technologies, computer implants 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 are 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? Additionally, in what ways might the axes of gender and generation (and more specifically women and children) make a difference in how novel health technologies are conceptualised, developed, implemented or refused?'

Introduzione (Teaser)

An in-depth study of patient and professional involvement in governing converging technologies within the medical field may help bring about better policies related to disease diagnoses and health care.

Descrizione progetto (Article)

As new medical technologies, diagnostic methods and treatment options emerge, the concepts of health and disease are being redefined. In such a context, the way health professionals, citizens, patients and professional organisations consider and/or exploit medical technology is constantly shifting, prompting policymakers and authorities to define this new dynamic. The EU-funded project HEALTHGOVMATTERS used social science and ethnographic analysis to contribute to related efforts.

Looking at interactions among actors from caregivers to patients, the project team focused on four neurological conditions to complete their study, namely epilepsy, migraine, autism and mitochondrial disease. It investigated the links between neurology and genetics, in addition to rendering 'invisible disabilities' such as epilepsy and mitochondrial disease more visible through genome sequencing and imaging technologies.

The study of high-tech diagnostics involving genetic testing, magnetic resonance imaging, computer implants and new pharmaceuticals or devices furthered this quest, bringing together fields such as nanotechnology, biotechnology and information technology. The project team also looked at how patients, organisations and medical professionals are involved in new diagnostic, predictive or therapeutic solutions and who impacts their development.

Having conducted over 140 interviews with stakeholders, in addition to working with patient organisations, laboratories, clinicians and scientists, the project gathered a wealth of information on the topic. It outlined key findings in different areas such as patient organisations and professional organisations, considering as well the role of gender and generation in producing and governing medical knowledge and technologies.

In essence, such a study could have an important impact on research in interdisciplinary fields such as medical sociology, anthropology and science studies. More importantly, it could help analyse and improve science and health policy, as well as health governance, in ways that can benefit patients.

The results have been disseminated through workshops and the project's final conference, as well as through the http://www.healthgovmatters.eu (project website) and a series of publications. With more articulate policy implications and new recommendations, converging technologies can be harnessed in the best possible manner to support the health of Europeans.