22 January 2024
In this blog Linda Parton, a public contributor on the Personalised Primary care for Patients with Multimorbidity (PP4M) study, reflects on how she became a public contributor, the various ways in which she’s been asked to contribute to research and her advice for someone interested in becoming a public contributor.
PP4M is a project ARC West is contributing to in conjunction with three other Applied Research Collaborations: West Midlands, Wessex and South West Peninsula.
I got into patient and public involvement (PPI) rather by accident and without knowing anything about it.
After teaching in Staffordshire for 20 years, I went to volunteer in Namibia for two years with my husband. Those two years turned into 14 years during which I volunteered and worked in various countries in Africa and South East Asia. While in those countries, we lived and worked with some of their most disadvantaged populations. When I retired and came back to the UK, I knew I wanted to use my knowledge and skills for the benefit of my own community but didn’t have a clue how I could do that.
I was drawn to health issues because a lot of my work had previously been focussed on HIV prevention and mitigation, disability and inclusion. On a personal level, I had learned about the importance of taking responsibility for your own health. When you are 350km from a doctor or a plane journey away from secondary care you soon learn to manage your own conditions and appreciate the need for good, evidence-based information for patients.
I joined the Patient Participation Group (PPG) at my GP practice. One day, two people from Keele University came to talk to us about how we could support a pilot project where a physiotherapist from Keele would be working at the practice one day a week. The idea was that patients presenting with musculoskeletal problems could be referred to the physio rather than being referred immediately to orthopaedic surgery.
After that meeting, I was invited to join the LINK (Lay Involvement in Knowledge Mobilisation) group at Keele. I went along, not knowing what I was getting into, and immediately felt welcomed and valued. I especially enjoyed talking to researchers about their plans and making suggestions.
Through LINK I learned about National Institute for Health and Care Research (NIHR) and became a lay member of a Health and Care Service Delivery Research funding committee. This work involves looking at funding proposals and allows me to take learning back to the researchers at Keele.
During this time I also became very interested in writing plain language summaries of research projects. With the help of the PPI department at Keele, I put together information sheets on what a summary should contain, how it should be written and why it is important.
It is impossible to list all the PPI activities which I have been involved with and there’s lots that I feel I have achieved. I was especially thrilled to get my name on an academic paper for the first time when I was 72! If I were to give out advice about how to get involved with PPI it would be:
Through the LINK group, I became involved with the Keele Global Health ECLIPSE project. It is a project aimed at reducing stigma around cutaneous leishmaniosis in Sri Lanka, Ethiopia and Brazil and I am lay co-investigator on it.
Also, through LINK I became involved with a new paramedic course at Keele. I interviewed students and was invited onto the course board.
I persuaded the course director that communicating with people with hearing loss is important for paramedics and now deliver a session about it each year. I’ve also done sessions with students on helping people with their hearing aids.
I am also delighted to be involved with a project based at Aberdeen University about how to involve public and patients in statistics in research. Contributing to this project has taken me back to my maths degree and teaching experience.
People may not know that I have played international tennis.
I was part of the Namibia veterans’ team which travelled 19 hours (in a very small coach) to take on the might of a Republic of South Africa provincial team. We got thrashed – but it was great fun.
I also sang and danced with Beverley Knight. At the time I was Country Director for Theatre for a Change in Malawi, an organisation working on the prevention of HIV and AIDS. We collaborated with a group of former sex workers, working in bars to spread the message, who had a daily music and dance session which Beverley was happy to come along to.