What is user involvement?...
INVOLVE, an organisation that supports greater public involvement in NHS, public health and social care research (http://www.invo.org.uk/), defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.
User involvement & RAPID...
RAPID Launch meeting, March ‘13
At Birmingham, we have been involving user groups (Patient Research Partners) in several of our projects and they can have an important impact on the research conducted. For example, the need for the RAPID project has, in part, been identified by members of the user group supporting the DELAY (www.earlyarthritis.co.uk) study. Currently we have around 12 people on the user panel for the RAPID study. Ultimately we hope that the user panel for the RAPID study will include both people with RA or other forms of inflammatory arthritis and members of the public without a history of arthritis.
We already had a number of meetings and consultations with members of the panel. Several important changes to documentation and research design have already occurred as a result. Members are also advising us on the content of this website.
Other tasks we hope our panel can help us with during the course of the project include:
- Feedback on the questions we develop for the big survey and suggestions for additional questions.
- Involvement in the development of lay summaries of the key research findings.
- Developing ways of looking at how people search for information on RA and what information is available to the general public.
- Input in the development of public awareness interventions.
At the University of Birmingham, we have recently set up the Birmingham Rheumatology Research Patient Partnership (also known as R2P2). R2P2 is a group of patients with RA or Sjögren’s, family members, and members of the public who support various research studies (including RAPID) at the University of Birmingham, Sandwell and West Birmingham Hospitals NHS Trust and University Hospitals Birmingham NHS Foundation Trust. As a group, R2P2 also works closely with patient organisations such as the Birmingham Arthritis Resource Centre.