2008 Conference

The Arthritis Research Campaign National Primary Care Centre has been working with patients and other people who use our research since 2001. We have defined “users” as patients and the public, but also include health care staff who will use the results of research (clinicians, managers and policy makers). We have set up two formal groups. First we have a User Involvement Forum which is made up of people with different types of joint problems. Second, we have a Knee Pain Forum to discuss issues of prevention of knee pain and disability. In our presentation we will give examples of the activity of these groups and what is it like being in a user involvement group. We will also cover how we work together on:

Individual project steering groups

Writing grant applications

Recruitment of research staff

Deciding on research methodology

We hope that people will learn about some examples of different ways to involve a wide range of people (patients, patient representatives and other stakeholders) in health care research.

We will highlight some issues for discussion that we have experienced including: matching national calls for research with patient and public involvement; payment; access, recruitment and workload.

Authors

Bird ~ Josephine

Representative from Keele User Involvement Forum. Josephine Bird has worked with the Centre for 3 years as a User representative. She was first interviewed as part of a study on knee pain. Jo was then invited to be part of a project steering committee and is now a member of the Keele User Involvement Forum.

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Jinks ~ Clare

Clare Jinks is a researcher who works at the Arthritis Research UK Primary Care Centre. Her research interest is Osteoarthritis. She has experience of setting up and running research users' groups. She has provided advice to researchers and clinicians who want to develop PPI in their research.

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