Remote osteoarthritis peer-mentorship for socioeconomically underserved people (RaMIgO Study)
Tell us about your project:
The increased burden of osteoarthritis (OA) in people experiencing socioeconomic disadvantage and its personal and societal impacts necessitates alternative and better forms of self-management support. Our research addressed this through developing a remote peer-mentorship programme for people with hip and knee osteoarthritis experiencing socioeconomic disadvantage and then exploring how this programme was acceptable and useful to them.
How did you involve people?
People living with hip and knee osteoarthritis (OA), many also experiencing socioeconomic disadvantage, were involved at all stages of this research project as co-applicants, PPI group members and volunteer peer mentors
Early in project development, we engaged with people living with osteoarthritis to help us formulate research ideas. We wanted to develop a project which built on our previous research, developing and feasibility testing a face-to-face peer-mentorship intervention to support osteoarthritis self-management. Our public contributors highlighted that peer support needed to be more inclusive and reach diverse populations, to help overcome barriers and health inequalities which underserved (marginalised) groups often experience.
We invited two people with OA to be co-applicants on the grant application. Their insights and advice helped shape out grant proposal adding relevance and practicality to our research ideas. Our PPI co-applicants have continued to provide tremendous support throughout the study and are valuable members of the Project Team.
For the project, we established a Patient, Public Involvement (PPI) Group which is co-chaired by our PPI Co-applicants. This PPI group consists of eight people with OA from diverse backgrounds and locations who meet regularly; and are involved in key decisions about the project. They have supported recruitment through their local communities and contacts and are closely involved with project communication and dissemination. We also have a Project Advisory Group, with three PPI members, who provide independent advice on our research.
We work collaboratively with people with OA as well as community organisations who support people with OA from diverse ethnic groups and in areas of deprivation. Our project used participatory approaches to adapt and develop our peer mentorship support intervention to be delivered remotely and be suitable for people experiencing socioeconomic disadvantage. We held several public engagement activities, with representatives of community groups, people with OA experiencing socioeconomic disadvantage and members of our PPI group.
Our PPI members were instrumental in helping us develop an educational resource pack for peer mentors They advised on acceptability and style of content and took part in practice sessions to test remote delivery of the peer-mentorship programme. This enabled us to identify and adapt any delivery issues prior to starting the peer-mentorship programme with research participants.
We recruited 14 volunteers with OA to be trained as peer mentors to deliver the peer-mentorship programme. Several of our PPI members with peer-mentorship experience contributed to the training sessions. Their input was informative and encouraging to our new volunteer peer mentors.
The next stage of our project involves holding stakeholder discussion forums with PPI members and others living with OA to discuss our project findings and explore the challenges and solutions to wider implementation of remote peer-mentorship.
How did you find people to involve in your project?
We successfully recruited people living with osteoarthritis to be members of our PPI group through the UK’s National Innovation Centre for Ageing-VOICE®; individual contacts; social media, and via the research team contacts who were involved in the National Institute for Health and Social Care (NIHR) INCLUDE Socioeconomic Disadvantage Framework. We had established good relationships with people with OA from a previous study, some of whom were keen to be involved in this project. Our PPI members are diverse in terms of ethnicity, gender, age, socio-economic status and geographical location. They also vary in research knowledge and experience.
How did you support people in your project?
- We provide regular and ongoing one-to-one support and guidance to PPI members through our academic lead for PPI and our two experienced PPI co-applicants.
- Our volunteer peer-mentors are contacted regularly by a member of the research team and offered personalised support as required, to carry out their role.
- We communicate with people in the way they are most comfortable – e.g. email, text, WhatsApp, phone call, which has helped with their engagement.
- We hold regularly meetings with our PPI group and provide regular email updates about the project.
- We ensure that PPI contributions are valued and acted upon, feeding back when and how their input has impacted on the study.
- We are clear and upfront about offering payment for study involvement activities and process payment for PPI activities efficiently.
- We ensured that we had the appropriate budget to involve public contributors for every activity they support.
- We jointly developed and agreed clear terms of reference for our PPI group.
- We offered training through the NIHR Public Involvement and Engagement Training.
Can you give more examples of how you worked with them?
- Our PPI co-applicants helped us with patient facing materials, going through the documents with the researcher.
- We provide detailed information about the study and updates through regular meetings and emails and get input from our PPI members.
- PPI members have supported recruitment through their local communities and contacts.
- PPI members helped us to develop an educational resource pack for peer mentors, advising on the content and style.
- We held a two-day training event for our volunteers to train them to become peer mentors, supported by our PPI group and PPI co-applicants.
What impact did it have?
Very good engagement and support with the study. Our PPI members felt part of the study.
New approaches to recruiting research participants.
Improved educational resources for use in the study.
Improved communication and dissemination plans for the study.
What would you change if you could do it again?
It would be useful to have allocated more funding for PPI input/activities as the input provided by our PPI group, PPI co-applicants, PPI members of our Project Advisory Group was very valuable. More PPI meetings and opportunities for engagement activities. They like that and it makes them feel part of the study
What tips would you give another researcher?
Involve people with arthritis at the start of your project.
Continue to work hard to engage and involve your public contributors in real and meaningful tasks.
Incorporate PPI views, it will improve your study.
What challenges did you face and how did you overcome them?
Through the University, the system for paying public contributors is often complex. To overcome this, we streamlined the process and helped to complete the form with the public contributors.
It took time to recruit a PPI group, but with having established mechanisms for recruitment, we were able to involve people as valuable members of the project team.