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Involving service users in research

Julie Coleman, a Senior Lecturer in Occupational Therapy at Sheffield Hallam University, emphasizes the importance of involving service users in research. With 20 years of experience in mental health services, she advocates for a collaborative approach that avoids tokenism. By involving users from the start, providing them a defined role, and compensating their contributions, researchers can gain valuable insights. Coleman also highlights resources like digital storytelling to amplify user voices. For ethical guidelines, refer to the 2004 publication on survivor research ethics.

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Involving service users in research

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  1. Involving service users in research Julie Coleman

  2. Who am I? • Senior Lecturer in Occupational Therapy at Sheffield Hallam University. • State registered Occupational Therapist. • Researcher – worked with Dr Sarah Cook on her pilot RCT for Occupational Therapy with people with psychotic conditions. • Service user/survivor with 20 years experience accessing primary and secondary mental health services.

  3. How to involve us • To avoid tokenism: • Involve us from the very beginning and give us a clearly defined role. • Pay us • Meet us half way – don't expect us to travel all the way to you. • Remember we can only speak for ourselves from our own experience – I am not "representative" • Listen to our stories

  4. My story • Digital Storytelling • www.pilgrimprojects.co.uk • www.patientvoices.org.uk • click here to open the digital story shown on the day. (needs windows media player).

  5. Useful resource • The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors Alison Faulkner 2004 • downloadable from the Joseph Rowntree Foundation at http://www.jrf.org.uk/bookshop/eBooks/1861346662.pdf or http://www.jrf.org.uk/bookshop/details.asp?pubID=639

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