Refining research through public involvement: experiences of an early career researcher

What did you do?

I’m currently developing a project to explore the perceived impacts of participating in healthcare research. Specifically, research that is led by healthcare professionals from outside medicine. This includes nurses, midwives, allied health professionals (such as occupational therapists, physiotherapists, speech and language therapists, dietitians, radiographers) and pharmacists.

I felt that it was important to speak to individuals who had previously taken part in this type of research to discuss my proposed ideas and to gather their feedback. By involving such individuals at an early stage of my research I aimed to refine my research plan and tailor the design of the project to improve the acceptability of my research for potential participants.

 

What were you trying to achieve?

I wanted to find our what these individuals thought of the project in general, whether they thought it was a reseach area worth exploring and whether they had any suggestions for improvement; particularly in communicating the project to potential participants. I also wanted to begin discussing ideas for the qualitative interview questions for participants, and gather feedback on my plain English summary of proposed research.

 

Four steps in PPI - identify opportunity, speak to people, change plan, evaluate outcome

A basic overview of the public involvement process. Find out more about public involvement on the PERC public involvement resource hub.

 

Who did you involve and how did you find them?

I was looking for individuals who had previously taken part in healthcare research led by healthcare professionals other than doctors as this was most relevant experience relating to my research project. I prepared a brief advertisement for my planned public involvement activity with assistance from the Patient Experience Research Centre (PERC) which outlined who I was looking for, how they would be involved, the time commitment required to be involved and some brief background information regarding the project. PERC then sent out the advert to their exisitng public involvement groups, including the BRC public advisory panel and the Imperial Young Persons’ Advisory Network and we were able to recruit two individuals with relevant experience to be involved.

 

Were the people you involved given any training?

No training was required. Both public advisors were part of established public involvement groups and already had a lot of public involvement experience. I was most interested in their initial thoughts and opinions. I organised a brief one-to-one phone call with each of the public advisors to introduce them to the project and to answer any questions about being involved.

Design and checklist icons linked together

Did you achieve what you set out to do?

Yes! The public advisors were supportive of the project and provided extremly valuable feedback that included:

  • the simplification of the study title;
  • re-wording of the plain English summary;
  • additional suggestions for opportunities for patient involvement throughout the project
  • clearer use of terminology; and
  • additional interview questions and prompts.

These suggestions have greatly improved the relevance and clarity of my research proposal and have now been included within my fellowship application. There were no negative impacts. The patient advisors were engaged in the project and genuinely wanted to help.

Both advisors reported that they had found the discussion and review activities interesting and wished me well with the project. With support from PERC, I was able to offer some reimbursement for the time the advisors contributed to supporting this project. I found their input invaluable and believe that the project has improved thanks to their comments and suggestions.

What was the most challenging part of doing public involvement and how did you overcome it?

I would have struggled to find people and recruit the advisors without assistance from the PERC team. Their guidance also allowed me to incorporate demographic and experiential diversity among the public advisory team. I now have a good understanding of the process of identifying, recruiting, and working with public members.

What advice would you give other researchers interested in doing something like this?

Don’t be afraid to involve patients and/or the public in all stages of your research. It’s really helpful to have feedback from people outside the research team, with different backgrounds and life experience. Don’t feel that you have to develop a patient and public involvement group from scratch, there are lots of existing groups who are happy to help.

So, what’s next?

I am now waiting on the outcome for my fellowship application, if successful, I have planned (and costed in) further public involvement throughout the project.

 

Are you working on an Imperial Biomedical Research Centre project? Get in touch with the PERC team to discuss how you can also involve patients and the public in developing your research plans.

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