Introduction to Patient and Public Involvement and Engagement

In this step, Karen Turner, Cancer Research UK Senior Research Nurse writes about Patient and public involvement (or PPI) in clinical research is about involving patients, carer’s, service users and the public in the development, management and dissemination of clinical trials.

By involving the very people for whom the trial will be relevant, you can put the needs and preferences of patients, carers, service users and the public at the heart of the research. PPI is different to patient and public participation, which refers to the actual recruitment and randomisation of individuals into a trial, as trial participants. It also differs from public engagement, where information and knowledge about research is provided and disseminated amongst patients and the public. This will be introduced briefly at the end of this article.

INVOLVE, an organisation funded by the National Institute for Health Research supporting public involvement in research, defines PPI in research, as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

what is patient and public involvement

This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.

When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.

Why it is vital to work collaboratively with patients, carers and members of the public?

People who are affected by research have a right to have a say in what and how publicly funded research is undertaken.
Patients and members of the public might have personal knowledge and experience of your research topic or be able to provide a more general perspective.
People who are affected by disease may have different perspectives on which topics are meaningful to fund for research.
Their input can lead to better and more targeted information being provided.
This insight can drive trial design to incorporate more practical methods for data collection and timely interventions.
Participant recruitment can be improved.
Data will be richer and findings will be more relevant to the patient population.
Dissemination of results can be targeted in the best way.

Benefits to the Researchers

It should now be clear to see PPI brings many benefits to your research, but it will also benefit you, the researcher.

PPI will give you a greater knowledge and understanding of the issues faced by service users / those with the clinical condition you are studying.
This unique relationship will lead to greater satisfaction and enjoyment of the research project.
Researchers gain an increase in credibility and public trust when they have developed research in collaboration with patients, carers and members of the public.
It can improve relationships within communities and develop partnerships to effect change.

Benefits to the PPI Representative

Collaborating with researchers on clinical trials is an exciting opportunity. It can be very empowering to help ‘give back’ and contribute to research for future generations. Some people have said it:

Develops new skills and knowledge
Provides support and new friendships
Is enjoyable and satisfying
Is exciting to help look for better treatments and care to help others

What do we mean by Collaboration with PPI and Researchers?

People may be involved with your research from a basic level of “our study is now under way, but we need some patient, carer and public perspective. Can you help?” Or you can work your way towards greater collaboration gradually through stages, for example:

“We’ve produced our research proposal - what do you think?”

“We’re in the process of producing our research proposal, we would like you to look at the lay summary”

“We have an idea for out next research project. Could you help us develop it?”

“Can you help us to identify and prioritise some new research topic ideas?”

There are many ways you can involve patients, carers and members of the public in research, here are a few examples in the image below, but you may have come across other areas that would be good to share with every-one else in the discussion below.

Things to Consider

It can be easy to feel overwhelmed as a researcher with all the regulatory aspects of conducting a clinical trial and so often, PPI can be felt to be a ‘tick box’ exercise. Effective collaboration with PPI representatives is hugely rewarding and vital to the validity of the research, however, there are some very important things to consider.

Public Engagement

So far we have introduced involving the public in research. It’s important to also mention public engagement at this point, as ‘involvement’ and ‘engagement’ are two different important activities, which can work well together.

Public engagement relates to the provision and dissemination of information and knowledge about research amongst patients and the public. It might involve social media, talks, exhibitions, focus groups, surveys or advisory committees.

This is a two-way process, as engagement also encourages researchers to listen and interact with the general public, better informing future research. Rather than focussing on a specific research project (as for patient and public involvement), public engagement considers science and research on a more general level. Such activities can help establish links between researchers and the public prior to a specific topic or may help generate ideas for future research.

Public engagement can occur throughout the research cycle. The Public Engagement Onion (developed by the Welcome Trust) provides a model of public engagement activities and can be used as a useful toolkit by researchers.

The closer the ‘activity’ is to the ‘core’ of the model, the more impact public engagement is likely to have on a future research project. Researchers are encouraged to employ activities from several segments of the public engagement onion model, to really develop effective engagement and involvement.

Conclusion

PPI is changing the culture and the way in which we design, conduct and report on clinical trials. Researchers at all levels have a responsibility to develop collaborative ways of involving patients and members of the public in their research.

In 2015, a review of patient and public involvement in research was published by the UK National Institute for Health Research (Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research).

“By 2025 the department of health expect all people using health and social care, and increasing numbers of the public, to be aware of and choosing to contribute to research by:

Identifying future research priorities/questions

Informing the design and development of innovations

Participating in research studies

Advocating for the adoption and implementation of research in the NHS.”

The main message is that we should all start involving patients and public in research, even if it is a small activity at first.

Be flexible, offer options for everyone depending on where they live and how much time they can offer. Start early and build costs of PPI into the grant application.

Be broad when forming your PPI group or identifying representatives.

And if people can’t commit long term, let them dip in and dip out as necessary, but be clear about what you are asking people to be involved with - great PPI comes from clear communication about expectations, delivery and evaluation of the involvement.

References

GRIPP2 Reporting Checklists: https://www.bmj.com/content/358/bmj.j3453

Impact of Patient and Public Involvement on Enrolment and Retention in Clinical Trials: Systematic Review and Meta-analysis: https://www.futurelearn.com/links/l/daceg55evnoh9h8voavzy42mq66yo3f

Involve: https://www.nihr.ac.uk/career-development/health-and-care-research-introduction/involve-patients

Wellcome: https://wellcome.org/

Going the extra mile: https://www.nihr.ac.uk/going-the-extra-mile

Collaborating in applied health research: https://www.nihr.ac.uk/about-us/what-we-do/infrastructure/applied-research-collaborations

The European Patients Academy (EUPATI): https://www.cancerresearchuk.org/funding-for-researchers/patient-involvement-toolkit-for-researchers

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