Authors: Lianne Kearsley-Fleet (researcher) and Natasha Shaw (patient partner).

Background

Researchers are often criticised for working in isolation, looking at outcomes in people they have never even spoken to in real life. A University of Manchester researcher, Lianne, and a patient partner on her research project, Natasha, discuss what it is like working together and what lessons they have learnt.

From a researcher’s perspective (Lianne)

Dr Lianne Kearsley-Fleet

Prior experiences of patient involvement in research: I have been researching outcomes in juvenile idiopathic arthritis (JIA) since 2012. However, with the start of my fellowship (my own research project) in 2024, I knew I wanted to include those with lived experiences of JIA as part of a core group of advisors, known as patient partners. I felt that this was particularly important to ensure that the research I did was relevant and important to those living with JIA.

Recruiting patient partners to be involved: I assumed it would be extremely challenging to find someone interested to participate as a research partner, a role involving multiple online meetings a year with other members of the research team. However, after reaching out to national arthritis charities to share the opportunity to be a ‘patient partner’ for my research project, I received many responses of interest.

My first meeting: For my first full team meeting with patient partners, researchers, and collaborators, I was extremely nervous. I was aware I had little progress to report and was anxious to not waste everyone’s time. However, I knew the importance of bringing everyone together for the project to succeed and was pleasantly surprised by how engaged each person was during the meeting. Whilst the agenda was minimal, the conversations we had were useful and sparked ideas for what we could do in the future. After the meeting, I spent a lot of time reflecting on the processes and what I could have done better. I emailed the patient partners to get their opinions and have aimed to implement as many of them as possible – see suggestions below.

From a Patient Partner’s perspective (Natasha):

Prior experiences of patient involvement in research: I am in my late 20s and have had JIA since I was 1 year old, with uveitis on and off. Whilst I’ve been involved in past arthritis research as a study participant through giving samples as a child with my parents’ consent, I’ve not had much direct experience working with arthritis researchers before, so this has been a different aspect for me in my arthritis volunteering. I’ve been involved with arthritis research since around 2021 through volunteering on the Versus Arthritis Young Peoples Panel, and have attended conferences such as BSR and the Adolescent Rheumatology Symposiums to learn more about current advances. I’ve also been able to conduct my own research and present an abstract based on healthcare communication and access issues for young people with arthritis.

Becoming involved in this project: I found this opportunity through a young people with arthritis event. When I saw it, I knew I had to get in touch! It’s been a good experience so far! Lianne keeps regular contact and I’ve been able to help review social media, input on survey design and questions, and be involved with paper outputs from the research. I feel like my suggestions have been taken on board and I like that I’ve been able to get involved as much or as little as I’d like.

Call to action!

Before a meeting, researchers should:

• Set clear expectations for the patient partners including an outline of roles and responsibilities.
• Share an agenda with everyone before the meeting and highlight items where you want input from patient partners.
• Highlight agenda sections that might be ‘science heavy’ so no input needed (unless they want to).
• Make every effort to pay travel to the meeting (if in person) beforehand so that nobody is out of pocket.

During meetings, researchers should:

• Create an inclusive environment, for example, first name everyone to avoid use of titles (i.e. Professor).
• Not assume the patients won’t understand and skim over sections; make an effort to explain everything.
• Make time at the end of the meeting for just the patients to remain to discuss the meeting, action points, questions, and provide an opportunity for additional comments that couldn’t be said during the meeting itself.

Patient partners should not be worried about speaking up in meetings.

After the meeting, researchers should:

• Share minutes with everyone after the meeting (preferably quite quickly after the meeting whilst it is still fresh in everyone’s mind).
• Send separate follow-up emails regarding any individual patient requests.
• Immediately organise payments to patients for the meeting.

Patient partners should make sure they’ve understood everything from the meeting, and email afterwards if there are any questions.

Final remarks

From both sides I think we can agree that it all still feels very new, and we all have a lot to learn. The experience has been great so far, and we are both looking forward to seeing how this progresses into the future. To date, this collaboration has resulted in one co-author publication (look out for future blog posts for a sneak peek), one planned joint campaign to understand how researchers use people’s data, as well as pushing this project forward with those with lived experiences at the heart of decision making.

For anyone wanting to get involved in research as a person with lived experiences of the arthritis, most of the national charities have patient partners or groups that you can join, for example Versus Arthritis Patient Partners, and JAR VIP Panel. Additionally, if you see that some research is being done that is interesting to you, contact the researcher and just ask – I am sure they would be delighted to point you in the right direction!

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