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
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
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
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
Dr. Robert Evans
Principal Investigator. Senior Lecturer. Tel +44 (0)2920 874 034
Dr. Inna Kotchetkova
Research Associate, QUALITI. Tel +44 (0) 2920 875123
Address for correspondence:
School of Social Sciences
King Edward VII Avenue