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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
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