A159
User involvement in a research collaborative: progress through participation
Katherine Froggatt1, Jane Seymour2, Jill Robinson1
1Lancaster University, Lancaster, UK, 2University of Nottingham, Nottingham, UK
Background
User involvement can help ensure that research is undertaken that reflects user priorities and perspectives. Within the Cancer Experiences Collaborative (CECo), a NCRI-funded Supportive and Palliative Care Research Collaborative, user involvement is being developed through engagement with research partners (members of the public and service users). In October 2007 a research partner forum was established.
Method
The forum has two aims: (a) to support individuals to become involved in the development of CECo initiated projects; and (b) to develop research partner led project(s)
Monthly meetings, facilitated by a CECo research fellow, are held to provide a regular contact between the research partners and CECo researchers. Further involvement occurs through specific project meetings and training events.
Results
The forum currently has 6 members with a range of professional backgrounds, personal experiences of cancer and other life-threatening illness and caring responsibilities. Six meetings have been held since October 2007. Forum members have also attended a research course (2 people) and attended the CECo Annual Scientific Meeting (1 person). Comments have been provided on 7 proposals. Initial ideas for the development of their own research are under consideration.
Conclusion
There are important benefits to CECo of this initiative. However, challenges exist regarding the demands placed upon individuals and resources required to sustain the involvement of all parties. User involvement requires an investment on the part of researchers and research partners in order to develop effective, sustainable relationships. Only then will quality research projects be developed that incorporate user perspectives.
