The PRIME Project: The challenges of developing a user-focused research agenda for ME/CFS research
2006 Conference
Chronic fatigue syndrome (CFS) or myalgic encephalytis (ME) can have an overwhelming impact on an individual’s life. The nature of the condition makes it difficult for individuals to make their voices heard through conventional channels of user involvement.
It is recognised that ME/CFS needs a more user-focused research agenda. The PRIME Project (Partnership for Research in ME) is contributing to this with an ‘evidence-base’ of experiences data, based on interviews with individuals with ME/CFS. We have worked closely with patients, charities, and other stakeholders to form the aims, methods, interpretations and presentation of the study. This evidence-base will be freely available on the internet via the PRIME e-community for researchers and people with ME/CFS to use.
In this presentation we will identify some of the key challenges in this work including:
- The different perspectives of patient evidence that are held by users, researchers, clinicians.
- How best to use the patient-based evidence to facilitate the development of a user-focused research agenda.
- How to use technology to facilitate the development and dissemination of a patient evidence-base.
We hope to promote discussion and consider how the aims of this project may also apply to other areas of work.
Authors
Badenoch ~ Douglas
Douglas Badenoch is a founder director of Minervation Ltd, a web design and knowledge management company specialising in health care. Douglas and the Minervation team have extensive experience of creating accessible, evidence-based web sites for patients and professionals. Douglas will discuss some of the technological challenges of developing a patient-evidence base.
View all articles by this authorCrowe ~ Sally
Chair, Monitoring and Implementation Group, James Lind Alliance. Sally Crowe originally trained as a nurse, and then re-trained in public health, with a particular interest in patient and public involvement in research and service delivery. She chairs the Monitoring and Implementation group of the James Lind Alliance, a national initiative that aims to tackle treatment uncertainties in health care, www.lindalliance.org. She is also a Director of Crowe Associates Ltd, which provides consultancy, training and project management for patient and public involvement in health and social care research.
View all articles by this authorStaniszewska ~ Sophie
Senior Research Fellow, Royal College of Nursing Research Institute, Warwick Medical School. Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Patient's Experiences Programme at the Royal College of Nursing Research Institute (RCNRI), Warwick Medical School. Sophie is an INVOLVE Associate, a National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) PPI Group member and co-chairs the Methods and Impact Sub-group of Health Technology International. Sophie focuses on developing the PPI evidence base.
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