Evaluating the impact of patient and public involvement in health research

Involving patients and public in the design and delivery of healthcare research is a well-established practice in the UK and, increasingly, a prerequisite for funding. Funders are now turning their attention to the impact of the patient and public involvement that they fund. 

So, how do we evaluate the impact of patient and public involvement in research?

Before addressing the “how”, it is useful to consider what we mean by impact and why we evaluate the impact of patient and public involvement. 

• ‘Doing human’: ways for researchers to make patients feel comfortable to express themselves
• What underpins effective patient and public involvement in health and social care research?
• Resource collection: what is research excellence and how can universities achieve it?

Impact as a measurable variable can include the influence of patients on decision-making (that is, changes made to the research as a result of patient involvement such as altering the wording on participant recruitment materials or on a questionnaire), the effect on the patients (such as increased confidence, new skills or expanded social networks) or the extent to which patient involvement plans and activities have met agreed standards or criteria (for example, the UK public involvement standards).

In terms of why healthcare researchers measure the impact of their work, the focus is less on proving that involving patients and public is a “good thing” and more on improving how we do it, within a project and to inform other projects. What is working well? What can we do better? 

Here are tips to consider when measuring the impact of patient and public involvement in healthcare research projects.

1. Build evaluation throughout the project. Evaluating only at the end of a project limits the extent to which you can make improvements within a project. Only by evaluating throughout the project will you be able to learn and drive improvement in your patient and public involvement plans and activities.
2. Consider who should be included in the evaluation. Obviously, the patients who are involved in your research should be included. But a research project will also involve other stakeholders including researchers. Any potential changes that emerge as a part of your evaluation will affect other stakeholders and so you may want to seek out their views on your patient involvement activities.
3. Ask stakeholders what you could do better. Don’t just ask about how well, or badly, your patient and public involvement activities are going. This is valuable information but a key purpose of evaluating impact is to drive improvements in your project. 
4. Be clear about what it is you are evaluating. Work with your research team and patients at the beginning of the project to determine what is important to evaluate. Is it impact on decision-making? Is it impact on the patients themselves? Is it on the extent to which you have adhered to pre-agreed standards? Is it all these things? Don’t be afraid to be flexible. It may be that a type of impact emerges that you had not anticipated. Make sure it is captured.
5. Be proportionate. There is the potential for an evaluation project to become bigger than the research project itself. Consider the size of the project and the resources available when developing your evaluation plans.
6. Seek feedback from patients on your evaluation. When writing up evaluation reports, share these with the patients involved in your research to ensure that your reports reflect their feedback.
7. There isn’t one “right way” to evaluate patient involvement. Various valuable tools and approaches can be adopted. However, don’t be afraid of developing your own approach. You will know what resources you have, the group of people with whom you are working and what approach would best suit them. 
8. Disseminate your evaluation. This will help us develop the evidence base for what activities work and why and help drive up improvements in patient involvement in research.

In my experience, a key challenge when evaluating patient and public involvement activities is in ensuring that evaluation is embedded into the project and makes a difference rather than being merely “bolted on”. 

Two things are key. First, make sure that evaluation plans are included in the research proposal and costed in, including reimbursement for those patient and public contributors for taking part in the evaluation. Second, ensure that the evaluation reports are fed into the governance of the project – for example, evaluation reports can be an item on steering or other research management committee agendas. 

Evaluating patient and public involvement activities is important to justify funding in these activities and driving up improvements in research. It will also play a role in developing patient and public involvement as a discipline, helping us build the evidence base and credibility for patient and public involvement. 

Gary Hickey is senior research inclusion manager in the National Institute for Health and Care Research at the University of Southampton.

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