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INVOLVING PATIENTS IN THE RESEARCH PROCESS: A DESCRIPTIVE EVALUATION
Weiss MC, Sutton J, Adams C
Department of Pharmacy & Pharmacology, University of Bath,
Bath BA2 7AY (m.weiss@bath.ac.uk)

Background
Since the early 1990s there has been a growing interest in involving patients in research. July 2003 saw the establishment of INVOLVE - a group under the auspices of the Central Research & Development Committee, which actively promotes public involvement in the NHS, public health and social care research. When the authors received funding to undertake a research project exploring pharmacist supplementary prescribing, we decided to create a Patient Advisory Group to be actively involved in all aspects of the research process.

Aim
The aim of this study is to describe the ways in which patients were involved in this research. Ultimately our aim is to reflect upon the benefits and difficulties of this approach so the patient perspective can be accommodated more fully in future research projects.

Method
The project uses an ethnographic approach to describe the process of involving patients in research. The research draws from a number of data sources. These sources include a range of documents including papers circulated prior to the patient meetings and minutes taken afterwards, field notes taken during the meeting, tape recordings of the meetings (meeting 4) and reflective comments received from the patient participants themselves.

Results
Individuals were recruited through several chronic disease patient groups identified by the Patient Liaison Officer at the local Primary Care Trust. Prospective participants received an information sheet and replied to the researchers if they were interested in participating. In total, 10 individuals were recruited from two clinical areas: a diabetes support group and a chronic lung disease group. The group included 8 men, with an average age of approximately 60. The research project lasted one year, with the group meeting 6 times over this period, beginning two months before the project began. The remit of the group was to advise upon the conduct of the research to ensure that it maintained a strong patient focus, to comment on research materials such as interview topic guides, to discuss preliminary research findings and to make suggestions regarding the final report and its dissemination. A variety of techniques were used during the meetings including role play, small group work, brainstorming and the use of buzz groups.

Discussion
The use of a Patient Advisory Group in the research process was both challenging and highly rewarding. It necessitated a high degree of flexibility and offered a perspective which was completely different from the view of traditional project steering group. It is important for pharmacy practice research to incorporate the patient's perspective and a Patient Advisory Group is an effective method of doing this. Greater detail on the lessons learnt from this process will be subject of this presentation.


Presented at the HSRPP Conference 2006, Bath