Involving the public in research funding

Research is key to improving primary care. The NIHR School for Primary Care Research (SPCR) funds research to find the evidence to improve practice. The SPCR also supports the next generation of primary care researchers and clinicians by providing funding and training opportunities to develop their academic career.

As a publicly funded organisation, it is important that the research we fund will look at what matters to people. An important way to achieve this is by working with patients and members of the public to identify what research the SPCR should fund and asking our funded researchers to work with people throughout their research. That is where my role as Patient and Public Involvement and Engagement Manager comes in, to ensure we have processes and support in place to allow meaningful involvement to happen.

When the SPCR receives a research application, it is reviewed by academic experts and by patients and members of the public. Public reviewers will approach the task from a different angle to researchers. Rather than tapping into a wealth of knowledge and expertise gained throughout an academic career, public reviewers tap into their lived experience of using primary care services, living with a condition or being a family carer. Questions they might reflect upon when reviewing a research project are:

• Will the proposed research provide (long-term) benefits from a patient perspective?
• Has the research team discussed with patients, members of the public, community organisations or charities about what they want to research?
• Who are the public members they want to work with if the project receives funding and have they thought to work with a diverse range of people?
• If the research will recruit participants, have they thought about how to ensure the participants reflect the relevant (patient) population?

There is an anecdote I like to tell to illustrate the importance of involvement in research funding. When I worked for a different research funder, we received a study proposal that aimed to better understand a type of dementia. The methods the researchers wanted to use were good, using scans, tests, and interviews to answer their research question. They planned to ask the person with dementia to come in once and participate in all the different aspects of the study. By combining everything in one visit the threshold to participate would be lower, limiting the burden on the person living with dementia and their carer, whilst playing a vital role in generating new knowledge about dementia. It all seemed to make sense from the academic perspective. However, the people affected by dementia, who were reviewing the application, saw that differently. Based on their lived experience of living with dementia or caring for someone, they felt that a day of tests would be tiring and discombobulating for anyone, but especially when dementia already impacts your energy and memory. They foresaw incredible recruitment problems for the project, predicting people wouldn’t want to sign-up for such an intense day of tests and as such recommended to not fund the project in its current state.

By including people with lived experiences in deciding what research should be funded, organisations like the SPCR aim to fund research that is relevant and appropriate and will contribute to making a difference.

We would like to use this opportunity to say thank you to all the public contributors who are helping us in reviewing applications, taking part in interview panels and taking part in funding meetings. Their commitment helps us fund the research that has the potential to make a difference in the areas that matter within primary care.