TALKING TREATMENTS: ENGAGING CITIZENS AND PATIENTS IN HEALTH CARE PROVISION

The research project is part of the ESRC funded QUALITI node of the National Centre for Research Methods.

The research project is about the extent to which citizens and patients can contribute to the regulation of new medical sciences. The research is important because, although there is a growing consensus around the importance of more inclusive forms of regulation, there is much less clarity about how such forums should be organised, who should participate in them and what the purpose of this participation should be.

Research questions

The research will focus on the development of regulation of new treatment options for diabetes. The participants will be asked to consider risks and benefits associated with various treatments (including islet transplantation, various mechanisms of insulin delivery, vaccination, regenerative medicine) We are particularly interested to explore the views of experts, patients and the general public about stem cell research and the claims that it may provide a cure for diabetes.

Research focuses on two sets of questions. The first set of questions relates to the state of knowledge about diabetes, genetics and scientific research amongst different groups of participants. The second concerns judgements that these different groups make about the acceptability of different risks and scenarios. By combining the data on these two sets of questions, the research will provide both a critical examination of the potential for participation in the regulation of science and, in particular, insights in the following questions:

1. Risk and Trust: How do expert and lay groups assess risk and make judgements when faced with uncertain knowledge? To what extent do lay and expert groups argue in similar ways? What forms and levels of monitoring or surveillance do experts, patients and lay citizens think are appropriate? What rights should patients receiving experimental treatments be accorded and who should decide what is or is not acceptable?

2. Regulatory Institutions: How do different knowledge communities interact with each other and how are views changed (if at all) by these interactions? How does information and knowledge flow between organisations? What are the key social networks? What are the relevant spatial and/or temporal limits of regulatory networks? Do different institutional forms produce different networks? How effective are different institutional forms in building trust and contact between different social groups?

Data Collection and analysis

The research consists of three cumulative stages.

1. In-depth interviews with research scientists, clinicians, policy makers and activist groups. These will map the risk perceptions and agendas of elite groups, including research scientists, clinicians specialising in diabetes, representatives of Diabetes UK, JDRF and relevant regulatory and civil society groups such as Human Genetics Commission, Department of Health, the parliamentary Science and Technology Committees, Genetic Interest Group, GeneWatch, AMRC and other relevant organisations.

2. Focus groups and reconvened focus groups representing patients, their carers and the general public. These will explore how issues of risk, trust and regulation are viewed amongst these groups and assess the effects of different types of information on their perceptions.

3.A 'roundtable' conference at which data from all parties and preliminary analysis will be fed back to participants and form the basis of a final round of debate between expert, patient and lay groups. This conference will mark a significant break with traditional, segmented forms of regulation by bringing together key actors and agencies around a common agenda and in response to data collected from both interview and focus group stages.

An important feature of the research design is that it will facilitate networking across established boundaries. The project will both document the operation of the existing, largely incremental and segmented system of regulation and evaluate an alternative approach.

The findings will be published in journal articles for the academic and policy communities. We are also committed to disseminate our findings to the policy-making and regulatory authorities and will do so via reports and presentations.

Where are we now:

We have completed interviews with the professionals and are now analysing this data.

We were granted NHS ethical approval for our project and have worked with Llandough Hospital Diabetes Clinic to recruit patients for the focus groups.

Thank you to all who participated in our project, the outputs will be available shortly. Please contact Dr Rob Evans for further information.

Dr. Robert Evans
Principal Investigator. Senior Lecturer. Tel +44 (0)2920 874 034
evansrj1@cardiff.ac.uk

Dr. Inna Kotchetkova
Research Associate, QUALITI. Tel +44 (0) 2920 875123
KotchetkovaI@cardiff.ac.uk

Address for correspondence:

QUALITI
School of Social Sciences
Cardiff University
King Edward VII Avenue
Cardiff
CF10 3WT
Wales, UK