Volunteers in biomedical research: dissemination of findings
Lead Research Organisation:
University College London
Department Name: Science and Technology Studies
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
Publications
Morris, N
(2011)
Research volunteers workshop: Report on workshop proceedings. London: STS Department.
in STS Departmetn Occasional papers
Norma Morris (Author)
(2012)
Research participants : a potential 'public' for two-way dialogue on science?
| Description | Our general conclusion was that the question of research on (or with) human beings must involve consideration at both the macro and micro levels. Here, macro was understood as the level of the social and political, including issues of 'the politics of clinical trials', the inequalities of power embedded in social structures, the assumptions and characteristics of systems of research governance, and the immense diversity of both clinical studies and research participants which made generalisation difficult. The micro level embraced the experience and expectations of the individual research participant (still a relatively underinvestigated topic), as well as the scrutiny of individual clinical studies which makes up much of the day-to-day work of research regulatory systems (via ethics committees), and patient or consumer liaison groups. Recommendations for action at the microlevel included practical steps to enhance the role of patient and public/patient involvement groups, encouraging Ethics Committees and professional bodies to make feedback to participants a condition of their support, and emphasising the importance of working to develop good working relationships between researchers and participants. At the macrolevel the issues that Workshop participants agreed should have prominence were: o Trust - including threats to trust, and managing the delicate balance between trust and regulation o Gaps in regulatory systems - including attention to immediate issues of participants' but failing to address important social issues; variable scientific standards and lack of public involvement in commercial trials o Bureaucracy - simplification of regulatory system starting from patient/participant view on what they need' proportionate review o Knowledge-sharing - including (as now entering into UK Ethics Committee practice) patient-friendly information on available trials and information on trials with negative or inconclusive results. o Patient choice - effects of social structures, national policies and clinicians' recruiting practices on patients' freedom of choice to participate or not in clinical research o Expansion of public, patient and participant involvement and influence (PPI) - covering both increasing the proportion of clinical studies benefiting from PPI, including laboratory studies, extending the PPI role into the broad strategic 'macrolevel' issues raised earlier, improving methods of evaluation and campaigning for adequate finance to cover partnership costs. These action points are expected to be taken forward jointly or severally by organisations or individuals participating in the Workshop. Support for networking and an Information Resource are available on the website created as part of the workshop project at www.ucl.ac.uk/researchvolunteersforum |
| Exploitation Route | To inform the deliberations of policymakers; ethic committees, and hospital management; to influence the practice of clinicians and support staff involved in 'human subject' research (eg by providing feedback on research results to participants, seeking feedback from participants, involving patients/public in study design; to encourage more attention to participant issues in patient and PPI groups. A detaiied list of action points was formulated at the Workshop and these are expected to be taken forward jointly or severally by organisations or individuals participating in the Workshop. Organisations represented included for example the National Research Ethics Service, the Department of Health, the major funding bodies, and various patient groups. We have set up a website to facilitate and report on action. The published report has been disseminated to a wide range of interested bodies and individuals. |
| Sectors | Communities and Social Services/Policy,Healthcare,Culture, Heritage, Museums and Collections |
| URL | http://www.ucl.ac.uk/researchvolunteersforum |
| Description | Contributory influence on HRA policies concerning patient-volunteers and transparency over clinical trials/studies; promoting contacts between patient advocacy groups, hospital managers, researchers and research funders. Informed academic studies. Citations of a recent paper using data from ESRC-funded study (on reported stress and pain in patients attending for mammograms) in Nursing Journals suggest possible diffusion into practice over time |
| First Year Of Impact | 2016 |
| Sector | Healthcare |
| Impact Types | Societal |