RAND Europe was commissioned by The Healthcare Improvement Studies (THIS) Institute to conduct a rapid review of the evidence base on PPI in research. This report reflects on what we know and on knowledge gaps. It aims to help inform THIS Institute's efforts to establish and implement an effective PPI strategy, and should also be of relevance to other organisations and initiatives seeking to involve patients and the public in research.

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Patient and public involvement in research

Enabling meaningful contributions

by Sarah Ball, Amelia Harshfield, Asha Carpenter, Adam Bertscher, Sonja Marjanovic

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Research Questions

  1. What motivates patients and the public to engage with research?
  2. Why do researchers involve patients and the public in their studies?
  3. How are patients and the public involved in research?
  4. What are the challenges to patient and public involvement in research and how can they be addressed so that contributions are effectively enabled and rewarded?
  5. What is the impact of engaging patients and the public in healthcare research?

In recent years, we have seen an expansion of patient and public involvement (PPI) activities in research. This has been accompanied by a growing interest in understanding how PPI can best be mobilised and enabled, and in how it can contribute positively to the research process and to impacts from it. The body of literature on these issues has expanded rapidly in the last decade. However, the evidence base on what works, how and why remains fragmented and inconclusive.

RAND Europe was commissioned by The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge to conduct a rapid review of the evidence base on PPI in research. This report reflects on what we know and on knowledge gaps. It aims to help inform THIS Institute's efforts to establish and implement an effective PPI strategy. It should also be of relevance to other organisations and initiatives seeking to involve patients and the public in research in a meaningful and effective way.

Based on a rapid evidence assessment and interviews with experts, the report examines why and how patients and the public get involved with research, what enables meaningful involvement, associated challenges and potential enabling mechanisms, the impact of PPI, and the evaluation of this activity. Based on these insights, we provide a series of recommendations for THIS Institute and other organisations to inform strategies for engaging patients and the public.

Key Findings

Motivations for involvement

  • Patients and the public engage with research for a variety of reasons spanning: (i) interest in a healthcare topic, often driven by personal experience of a disease or of the health service; (ii) altruistic motivations to contribute to a better healthcare system through research; (iii) a desire to influence and reflect patient perspectives in research; and (iv) a more general interest in research activity and in contributing to scientific knowledge.

Approaches to involvement

  • PPI in health research can take place across different stages of a research cycle and at the level of an individual project, a portfolio of projects or at the organisational level. The duration, frequency or regularity of patient and public engagement can range from ad hoc, task-based contributions to long-term engagement across the lifetime of a project or research organisation.

Challenges, enablers and impacts

  • Challenges to effective PPI in research relate to governance and management issues, the capacity of individuals to engage, administrative challenges and challenges related to culture, values and attitudes. However, the growing focus on and increased commitment to PPI within research over the past decade has also revealed some key enabling mechanisms and rewards (e.g. feedback on contributions and on project progress and impacts; acknowledgment and recognition of contributions; learning and personal development opportunities).
  • The core categories of potential or realised impact from PPI in research span impacts on individuals (e.g. empowerment, influence), on research quality and relevance and on the wider research system (e.g. accountability for resource-use).

Recommendations

  • Think carefully about who to involve and why.
  • Ensure roles of PPI contributors are clear and well communicated.
  • Ensure that PPI contributors are well informed and supported to effectively engage.
  • Think about ethical considerations.
  • Build in monitoring and evaluation mechanisms.
  • Report on the methods used to engage patients and the public and on involvement outcomes.
  • Design efforts to recruit and retain patient and public contributors in a way that reflects the diverse factors which motivate them.
  • Consider the mix of approaches that will allow for effective awareness raising and recruitment.
  • Enable engagement through a mix of levers.

Table of Contents

  • Chapter One

    Background and context

  • Chapter Two

    Profile of the reviewed literature

  • Chapter Three

    Why does patient and public involvement in research happen?

  • Chapter Four

    How patients and the public are involved in research: an overview of approaches and methods

  • Chapter Five

    How can effective contributions from patient and public involvement be enabled?

  • Chapter Six

    What are the challenges and barriers to patient and public involvement with research?

  • Chapter Seven

    The impacts of patient and public involvement in research: what we know and what we do not know

  • Chapter Eight

    Reflection on key learning points and areas for consideration in future practice

  • Appendix A

    Examples of patient and public involvement in practice

  • Appendix B

    Study design and methods

Research conducted by

The research described in this report was commissioned by The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge and conducted by RAND Europe.

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