When members of the public and patients take a lead in the design of health research in the NHS: Challenges and successes

2012 Conference

Abstract:
The NHS National Institute for Health Research (NIHR) Research Design Service (RDS) and their partners within the NHS and NIHR often bring together patients and members of the public with clinicians and academics to develop well designed research proposals and projects. While barriers and challenges can be inherent in this process, these can be overcome depending on how those involved work together, the viability of the research question and the quality of the proposed research design. This paper will examine three case studies examining barriers and successes experienced when patients engage in health and social care research within the NIHR framework.

Case 1: In 2011 Thyroid UK aimed to investigate diagnosis and treatment management by focusing on symptoms and treatments. The project however faced many barriers and the project was eventually not submitted to the NIHR.

Case 2: A service user associated with the Limbless Association and Isle of Wight Amputees initiated and is actively involved in a multi-stakeholder research project that aims to improve care for established amputees.

Case 3: In 2010 the initiative of service users led to developing a successful research bid with professionals from Cambridgeshire and Peterborough NHS Foundation Trust, clinicians and researchers from Anglia Ruskin University leading to the successful granting of NIHR funding for a project on shared decision making in psychiatric medication management.

We hope that this paper will facilitate discussion with the audience on challenges and successes in user-led and highly collaborative research.