161. Patient Involvement in Musculoskeletal Research: A Qualitative Evaluation of Impact

Abstract

Background: There is a need to evaluate the effect of patient involvement activity on research, but gains provided by patient involvement may be diffuse and hard to quantify. Therefore, it has been suggested that an effective way to evaluate patient involvement is to examine impact on stakeholders, particularly patients and researchers. This poster presents findings from a recent evaluation of the impact of a patient involvement group on patients and researchers. In July 2010 the Patient Experience Partnership in Research (PEP-R) patient involvement group was established. Seventeen patients have been involved in this group, all have had personal experience of musculoskeletal conditions and treatment. The group meets with researchers every 8 weeks to inform the design and delivery of studies within a musculoskeletal research unit. Through facilitated group sessions, PEP-R provides input into refinement of patient recruitment materials, intervention development, readability of outcome assessment tools, and dissemination of findings. Patients also sit on steering groups and receive training. Methods: Impact of patient involvement was evaluated through administration of qualitative questionnaires to patients who were members of PEP-R (n=8) and to researchers (n=14) who had attended PEP-R meetings during the evaluation period (July 2010- November 2011). Participants were asked to identify the impact of the activity on themselves and the research. Responses were analysed using a qualitative framework approach. Results: During the period that was evaluated, patients met in group sessions 10 times to provide input into 21 studies and study ideas. These included: a pilot randomized controlled trial (RCT) of physiotherapy exercise classes for patients following total knee replacement, a longitudinal qualitative study to understand the patient experience of total joint replacement, and a RCT concerning intraoperative methods of wound anaesthesia in hip and knee replacement surgery (the APEX trial). Patients expressed their interest in learning about the topics and research in general and described the impact of PEP-R on research projects in terms of changes to research design. They particularly valued feedback about how PEP-R's input had shaped studies. Researchers identified the benefits of obtaining patients' views on the importance, relevance and feasibility of their projects. They welcomed the opportunity to speak to an interested and knowledgeable group and stressed the importance of early involvement. Researchers identified changes to aspects of their research based on PEP-R's involvement, and also commented that if they could not incorporate suggestions immediately, they could do so in future projects. Conclusion: Patients and researchers see patient involvement as beneficial. The model used in PEP-R facilitates patient involvement in the design and implementation of musculoskeletal research.