Patient and public involvement and engagement in research: Enabling meaningful contributions

Background

In recent years there has been 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 organised and encouraged, how it can contribute positively to the research process and potential 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.

Goals

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. 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.

Methodology

RAND Europe conducted a rapid evidence assessment of relevant literature alongside interviews with a range of individuals with expertise in the field. This review is primarily concerned with active PPI in healthcare research, such as helping shape research questions or priorities, or contributing to data gathering, analysis or interpretation. Considering patients and the public as study participants does not qualify as active involvement.

Findings

• Patients and the public engage with research for a variety of reasons spanning:
  • interest in a healthcare topic;
  • wanting to contribute to a better healthcare system through research;
  • a desire to influence and reflect patient perspectives in research; and
  • a more general interest in contributing to scientific knowledge.
• Researchers involve patients and the public in their studies for various reasons. Among these are beliefs that it will improve the quality and relevance of research as well as pragmatic considerations, whereby involvement is identified as a condition of research funding, as a response to a policy drive to share power and control in research between researchers and the wider public, or as a practical way of helping with recruitment and retention of study participants.
• PPI in health research can take place across different stages of a research cycle, for example through:
  • contribution to priority-setting exercises;
  • developing or reviewing funding applications;
  • helping design studies;
  • assisting with recruitment of study participants;
  • engaging with data collection and data analysis;
  • facilitating dissemination and research uptake; or
  • contribution to evaluation activities.
• A range of challenges to effective PPI exist in the research system. However, the growing focus on and increased commitment to PPI within research over the past decade has also revealed some key ways to aid engagement and rewards. The rewards for engagement that matter most to patients and the public include feedback on their contributions and on project progress and impacts; acknowledgment and recognition of contributions; and financial payments or compensation.
• Some of the challenges to effective PPI include: inappropriate financial resourcing; limited patient and public awareness about involvement opportunities; recruitment and retention strategies based on insufficient understanding of what motivates PPI contributors; insufficient clarity on PPI contributor roles; ineffective communications due to overuse of scientific jargon; public and patient reservations about their ability to influence.
• Some factors that enable effective PPI include: compelling and clear communication about the goals of the research and why PPI contributions can make a difference; training and support for PPI contributors on how to effectively engage with research; establishing ways to involve patients early on to ensure a sense of shared-ownership of the research challenge; the use of accessible language; feedback on the impact of individual contributions and on research progress; flexibility in timing of engagement and on mechanisms for contributing; effective management of reimbursement and reward for PPI contributors.
• The evidence base on the impact of PPI in research is piecemeal and inconclusive, with many studies reporting hypothesised and perceived impacts. The core categories of potential or realised impact span impacts on individuals, on the quality and relevance of research projects and on the wider research system. Impacts on individuals can include the empowerment of patient and public contributors through learning new skills. The impact on the quality of research studies can happen through influencing research priorities and influencing how data is collected, analysed and interpreted to ensure a patient and public perspective; and impacts on the wider research system could occur through an effect on access to research funding.
• There are some unintended consequences associated with the conduct of PPI that researchers can try to reduce. For example, dismissive researcher attitudes may make patients feel unheard or unvalued, and conversely, where a researcher feels mandated to involve patients and the public, this can demotivate researchers and accentuate tokenistic practice.

Challenges to and enablers of effective patient and public involvement

Driver of effective involvement	Challenges	Enabling mechanisms
Governance, management and infrastructure	Inappropriate financial resourcing for PPI. Poor reporting on PPI processes and limited monitoring and evaluation. Little coordination and shared learning between different PPI bodies. Lack of a common definition of PPI leading to confusion about what it entails. Limited patient and public awareness about involvement opportunities. Recruitment and retention strategies based on insufficient understanding of what motivates PPI contributors. Insufficient clarity on PPI contributor roles. Lack of in-built feedback mechanisms. Administrative challenges related to limited support capacity, administration costs and/or system bureaucracy. Mandating PPI in the absence of evaluation, leading to tokenism.	Ensuring sufficient resources for PPI activities. Effective management of financial reimbursement or upfront payment for PPI contributors. Ensuring clearly specified goals of PPI in projects and clarity in PPI contributor roles. Establishing mechanisms to involve patients early on in research design to build a sense of shared ownership. Mechanisms to nurture relationships throughout a project or initiative. Flexibility in timing of engagement and in how contributions can be made. User-friendly online platforms (e.g. well-designed, relevant and engaging online websites and portals).
Individual and organisational capacity	Scientific language and jargon posing challenges to effective communication. Lack of experience, knowledge, skills or confidence among PPI contributors. Risks of initiatives over-professionalising PPI and losing lay perspectives. Challenges to representativeness of contributors. Challenges relating to individual health or wellbeing (e.g. inability to travel).	Training and support for PPI contributors on how to effectively engage with research (e.g. training on a topic area or the language and process of research). Training for researchers on how to conduct effective PPI. Designated leadership for PPI within research organisations. Individuals feeling well enough to engage through the required mechanisms (and flexible and accommodating engagement mechanisms).
Culture, attitudes and behaviours	Tokenism impeding the implementation of articulated PPI strategies and approaches and their integrity. Dismissive attitudes of some researchers creating a barrier to effective relationships. Public and patient reservations about their ability to influence. Challenges for researchers in managing expectations of PPI partners (e.g. about roles and goals). Managing group dynamics (e.g. power-dynamics between researchers and PPI contributors, and between individual members of PPI groups).	Receptive researcher attitudes to PPI. PPI contributor openness to views other than their own. Investment in collaboration and co-learning. A commitment to providing feedback on how an individual has impacted on research, study progress, results and impacts. Acknowledgment and recognition of contribution and rewards (e.g. vouchers). A commitment to learning through PPI evaluation. Mechanisms to enable connected PPI contributor communities.

Recommendations

To inform strategies for engaging patients and the public in healthcare research, we offer the following recommendations:

• Think carefully about who to involve and why. Finding the right contributors is key for achieving desired impacts from PPI input.
• Ensure that the roles of PPI contributors are clear from the outset, communicated in accessible language, and that there is a shared understanding and belief in the aims of the research. The mutual management of expectations between researchers and patient and public contributors is key to effective engagement.
• Ensure that PPI contributors are well informed and supported to effectively engage. This includes:
  • providing sufficient background information about a project and contributors’ roles;
  • committing to transparency in the goals and expected outcomes of both the project and of PPI contributors’ engagement;
  • carefully planning for PPI contributors’ induction into a project; and
  • ensuring contributors receive training if needed.
• Think about ethical considerations beyond informed consent and formal ethical approval process requirements. This includes considering realistic timeframes for involvement, how PPI contributions will be acknowledged and recognised, and how research opportunities and outputs will be made accessible.
• Build in monitoring and evaluation mechanisms to learn from experience and inform future PPI activities.
• The publications stemming from projects should also report on the methods used to engage patients and the public (who was involved, how) and on the outcomes of involvement.
• Design efforts to recruit and retain patient and public contributors in a way that reflects the diverse factors which motivate people to engage with research.
• Consider the mix of approaches that will allow for effective awareness raising and recruitment, within the resources available.
• Enable engagement through ensuring appropriate management, governance and administrative arrangements; nurturing the requisite infrastructure for engagement; and ensuring that organisational values are reflected in the behaviours and attitudes of both researchers and PPI contributors.

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