Inverting the patient involvement paradigm: defining patient led research

Area of Science:

• Healthcare Research
• Patient Engagement
• Clinical Trials

Background:

• Patient and Public Involvement (PPI) is integral to UK healthcare research, driven by funders like the National Institute of Health Research.
• Existing PPI models often face criticism for tokenism and a persistent gap between patient priorities and funded research.
• Limited evidence shows patient involvement significantly influences the research agenda.

Purpose of the Study:

• To introduce a novel model for patient-led research, enabling patients to propose, design, and deliver their own studies.
• To demonstrate the feasibility and utility of the Patient Led Research Hub (PLRH) initiative.
• To address the mismatch between patient-prioritized research (quality of life) and industry-driven research (drug development).

Main Methods:

• Establishment of the Patient Led Research Hub (PLRH) hosted by the Cambridge Clinical Trials Unit.
• PLRH provides resources and expertise to support patient organisations in research design and delivery.
• Co-production of technically feasible projects, with patient groups retaining ownership and active roles in study management.

Main Results:

• The PLRH successfully supports patient organisations in initiating and conducting rigorous clinical research.
• Patient-led research produces credible studies directly relevant to patient needs and quality of life.
• This model allows research to proceed independently of academic or economic constraints.

Conclusions:

• Patient-led research models, like the PLRH, are effective in empowering patient organisations.
• This approach bridges the gap between patient priorities and research delivery, enhancing the relevance of clinical trials.
• The PLRH facilitates patient-driven research, leading to improved health outcomes and quality of life.