4 July 2011
Making a commitment to meaningful patient and public engagement in health services research.
‘It is so refreshing to meet people who have sparkles in their eyes about their work’ said a patient describing their encounters with researchers as part of their involvement in the Patient Experience Partnership in Research group (PEP-R). Since July 2010 the School of Clinical Sciences Musculoskeletal Research Unit (MRU) has created opportunities, via PEP-R meetings, for researchers and patients to meet and discuss research. Going beyond simply receiving ‘knowledge’ from researchers, the 10 members of public in PEP-R use their expertise as service-users to help design, develop and refine research projects.
PEP-R group members are people who have had, or are having, treatment for musculoskeletal health conditions such as osteoarthritis. Meeting every 2 months they have so far advised on the design and organisation of 19 research projects, 6 of which are current ongoing projects and 13 are funding applications. Examples of their work include enhancing recruitment literature and prioritising areas for future research.
Dr Rachael Gooberman-Hill, Senior Research Fellow, instigated the group with MRU colleagues and with support from North Bristol NHS Trust. It reflects their commitment to meaningful patient and public engagement in health services research.
As with any new project part of Rachael’s initial focus was to get the practicalities and organisation of the group working effectively and she works closely with Patient and Public Involvement Co-ordinator, Amanda Burston, to do this. An evening meal is provided at each meeting and travel expenses paid (such as pre-paid taxis and parking). Agendas are planned so that if any materials need to be sent to PEP-R members prior to the meeting these are thoughtfully prepared to make sure that they are clearly written. At the meetings group members’ ideas are recorded on flip charts, and on individual documents which the members can either take with them to return by post, email or complete at the meeting. The whole process has been refined in the light of the group’s preferences and the group learns about research methods and timelines while discussing real-life projects.
Reflecting on the first year of PEP-R Rachael feels that the ethos of the group is one of ‘collaboration and dialogue leading to immediate and long-term, observable benefits. These benefits accrue to the University’s research, research staff, to group members and other stakeholders including the wider public and the NHS.’
Rachael recently spoke at the launch event of a new initiative ‘People and Research South West’ a collaboration between the University of the West of England, the University of Bristol and a partnership of NHS organisations. The initiative will aim to support the public and researchers to work together in health and social care research and through its events will promote the networking of groups working with similar engagement aims but in different areas of health research.
Speaking with Rachael was patient-partner Lynden O’Neill and together they described their experiences of PEP-R. Emphasising how important it was to the group to see their ideas carried forward, they discussed the need for continuity in this kind of engagement work so that group members can see their impact on research. ‘To this end we always provide information to group members about how researchers are working with their ideas. We do this at the next group session and follow INVOLVE’s guidance on good practice.’ Their commitment is clear; a project for which data is currently being collected was originally an idea generated by a patient-partner.
Dr Gooberman-Hill and colleagues are now working towards sustaining PEP-R by ensuring that future funding bids continue to build-in patient and public involvement throughout the research process.
Contact Dr Rachael Gooberman-Hill firstname.lastname@example.org or Amanda Burston email@example.com for further details.
INVOLVE is a national advisory group which supports public involvement in NHS, public health and social care research. Their website offers resources, news and events listings and a research database of current projects involving members of the public as partners in research.
People and Research South West - contact Catrin Richards tel; +44 (0)117 3288809 email; firstname.lastname@example.org