Citizen Engagement in Research and Implementation
Contemporary health and social care research has repositioned the citizen – whether patient or member of the public – as active collaborator in health systems and health research processes.
This is variously referred to as involvement, engagement or participation, however there are numerous unanswered questions about this approach to knowledge production:
- How should we practically engage publics in health research?
- What competing rationales underpin citizen engagement in health and how these shape capacity for action?
- How different actors understand and respond to diverse forms of engagement?
- What are the effects on knowledge production and how can these be evaluated?
- What are the consequences of this reconfiguration of relations between experts, lay people and institutions?
Members of the group are considering these questions through a range of research studies and the hosting of a master's level module Engaging Publics in Health Research: Theory, Politics and Practices and two summer schools: The Challenge of Translational Research and Doing Social Science Research in Healthcare Settings.
For further information please contact Professor Chris McKevitt.
In this research group we are considering the question of citizen engagement in health systems, research and implementation through a range of studies, some of which also include developing and delivering methods of engagement.
We seek to develop appropriately sensitive epistemological and methodological frameworks for the research. We take an interdisciplinary perspective, drawing on anthropology, public health, organizational and policy studies, and using a range of methods including in-depth case studies, ethnography, surveys and documentary analysis.
Involving stroke survivors in health research
Engaging patients in translational research
Since 2005, Chris McKevitt and Nina Fudge have taken an ethnographic approach to investigate practices and understandings for user involvement policy as implemented in two enterprises in South London seeking to involve stroke survivors in service development and research. As part of this research they established a research advisory group - the Stroke Research Patients and Family Group with members drawn primarily from the South London Stroke Register. Nina's doctoral work drew on Lukes' three-dimensional view of power, embodied health movement theory, and biological citizenship to consider the implicit claims within user involvement policy that involving the public in the work of professionals will lead to patient empowerment, creation of new forms of knowledge and a transformation of unequal relations between patients and professionals. More recently their work has explored patient participation in research implementation as part of the EIS project.
Professional and patient understandings of self-management
The Biomedical Research Centre based at Guy's and St Thomas' NHS Foundation Trust and King's College London provides a site for social science work to answer questions of how to engage patients in translational research. Louise Caffrey and Chris McKevitt are investigating the theoretical and practical questions of recruitment to research in NHS sponsored studies.
Incorporating patient preferences in biomarker development
Euan Sadler was awarded the Stroke Association Research Fellowship to undertake an ethnographic study investigating the place of self-management in current physiotherapy practice in stroke rehabilitation. A number of studies of self-management interventions have reported mainly short term positive outcomes, such as improved confidence in self-management behaviours and improved quality of life after stroke. However, little is known about how health care professionals support stroke survivors and their carers to learn self-management skills at different points after the stroke, and how this fits with stroke survivors' own views and practices of self-management over time. Euan's work focuses on patient and professional understandings of self-management as a form of citizen engagement with health service delivery.
Exploring relationships between PPI and PES
Jean Harrington is a social scientist working as part of a multidisciplinary team to develop a biomarker test that will identify people who have had a kidney transplant who may be tolerant to their donated kidney and require less immunosuppression. However, biomarker tests are not 100% accurate and the benefits of reducing immunosuppression must be weighed against the risk of rejecting the donated kidney. The project has adopted a patient-centered approach early in the translational pathway, with Jean undertaking in-depth interviews with patients who have undergone kidney transplants so that thier views and preferences can be incorporated into the development and translation of the biomarker test.
Researchers' perspectives on engaging with PPI
Citizen-science movements are flourishing in Western societies under various guises - from people engaging in 'biohacking' activities to service users being actively involved in the design and delivery of health research. There is a strong need for a definition of citizen-science in order to reach a better understanding of what citizen-science is and entails. For over a decade two separate approaches to engaging citizens in scientific and health research have operated in parallel - Patient and Public Involvement (PPI) and Public Engagement with Science (PES). Through a systematic review, Clemence Pinel is exploring the relationships between these two approaches to engaging citizens with science and research.
Despite the wide recognition for Patient and Public Involvement (PPI) particularly by research funders, social science research shows that a majority of researchers are still sceptical about involving patients and other members of the public. As a result, involvement remains poorly integrated in the research process. This issue has so far been considered from the perspective of involved patients who experience ineffective PPI, but little is known about why researchers may resist patient involvement in their projects.
Aris Komporozos-Athanasiou is addressing this knowledge gap through in-depth interviews with researchers who have first-hand experience of doing PPI in the development of their research grant application. The interviews will explore researchers' day-to-day responses to the expectations for involving patients that are set by funding bodies; their understanding of the value of PPI in their projects; the difficulties they experience in involving patients in the context of other clinical targets; and the space and time limitations set by the research procedures.