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The PRIME project: developing a patient evidence-base.

Sophie Staniszewska¹, Sally Crowe, Douglas Badenoch

¹RCN Research Institute, School of Health & Social Studies University of Warwick, Coventry, UK. Sophie.Staniszewska@warwick.ac.uk

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Summary

This summary is machine-generated.

This study introduces patient-based evidence to capture lived experiences of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The PRIME project created a patient evidence-base offering in-depth insights for a more patient-focused research agenda.

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Area of Science:

Health Services Research
Patient-Reported Outcomes
Qualitative Research

Background:

Healthcare evidence traditionally prioritizes clinical and economic outcomes.
Patient contributions to evidence are often undervalued and difficult to integrate.
There is a need to formally incorporate patient experiences into healthcare evidence.

Purpose of the Study:

To propose and operationalize the concept of patient-based evidence.
To develop a patient evidence-base capturing the lived experience of ME/CFS.
To complement existing clinical and economic evidence with patient perspectives.

Main Methods:

The PRIME project conducted interviews with 40 individuals diagnosed with ME/CFS.
Participants represented diverse demographic characteristics and varying severity of illness.
Qualitative data collection focused on capturing the lived experience of ME/CFS.

Main Results:

A comprehensive patient evidence-base was developed through the PRIME project.
This evidence-base contains extensive data on patient experiences, organized thematically.
The data offers in-depth insights into the lived experience of ME/CFS for researchers and clinicians.

Conclusions:

The PRIME project's patient evidence-base is a valuable starting point.
Further conceptual and methodological development is needed for patient-based evidence.
Integrating patient-based evidence with clinical and economic evidence requires further exploration.