Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi

Anna Kearney1, Paula Williamson1, Bridget Young2

  • 1Clinical Trials Research Centre (CTRC), North West Hub for Trials Methodology, University of Liverpool, Liverpool, UK.

Abstract

Insights

This study identified top UK research priorities for patient and public involvement (PPI) in clinical trials. Key areas include building researcher-PPI relationships, selecting patient-important outcomes, and improving trial information accessibility.

Area of Science:

  • Clinical Trials Methodology
  • Health Services Research
  • Patient and Public Involvement (PPI)

Background:

  • There is a growing international interest in patient and public involvement (PPI) in clinical trials.
  • However, evidence on efficient, effective, and acceptable methods for implementing PPI in clinical trials is lacking.

Purpose of the Study:

  • To identify the methodological research priorities of UK PPI stakeholders.
  • To address uncertainties surrounding the implementation of PPI in clinical trials.

Main Methods:

  • A modified Delphi process was employed.
  • This involved a two-round online survey and a stakeholder consensus meeting.
  • A total of 219 participants completed the surveys, and 25 attended the consensus meeting.

Main Results:

  • The top three prioritized research topics were identified.
  • These include developing strong working relationships between researchers and PPI contributors.
  • Other priorities involve exploring PPI in selecting trial outcomes and improving the accessibility of trial information for participants.

Conclusions:

  • The prioritized topics highlight critical areas of uncertainty in PPI for clinical trials.
  • Addressing these research gaps is essential for enhancing PPI effectiveness.
  • Findings can guide the planning and funding of PPI research to minimize waste and focus efforts.

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