Nothing About Us Without Us – The Role of Patient and Public Involvement in Health Research
Written by Patricia Darcy, Researcher at Centre for Health and Development, Staffordshire University & Aisling O’Connell-Martin, Patient Advisor
Patient and Public Involvement (PPI) is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Patients by their experience of living with a health condition may have different thoughts and perspectives on health outcomes and the research design than the researcher does. The objectives of PPI are to develop equal partnerships between researchers and patients, where the person with a lived experience acts as an advisor to the researcher, providing input/feedback from his/her experience/perspective. PPI can be included in any part of the research process from the very initial stages i.e., determining the research question right through to dissemination.
My research has involved conducting PPI with a chronic pain population (people with a lived experience of fibromyalgia) across the Republic of Ireland and the UK on two studies within my PhD (an exploratory app study and a follow-up intervention study). Working alongside people with a lived experience is central to my PhD, where patient advisors have been involved from the initial stages to ensure relevance of the research questions and appropriate and effective research designs. Additional aims include supporting recruitment and adherence, facilitating effective dissemination and delivering impactful research that has sustained benefits.
To facilitate effective and meaningful PPI, three PPI groups have been established in the ROI (West of Ireland, Dublin and South-East Ireland), and a central group at Staffordshire University, UK. Both face-to-face and remote meetings (e.g., skype/WhatsApp/phone calls) have been facilitated in both countries. A closed Facebook PPI study group page has also been set up, which enables patient advisors provide feedback on research items as they arise while also addressing any geographical or travel restrictions.
To date 28 advisors across the ROI and the UK have contributed on various aspects of the research. Advisors can contribute as much or as little as they like and can also choose at what stage to be involved. This has included providing input on the research design, assessing participant burden, identifying barriers to adherence, reviewing study information material, providing feedback on app content and design, piloting the app and the intervention components, and contributing to a dissemination plan.
The main challenges have been geographical considerations, where PPI partners are located throughout ROI and UK, resource limitations (i.e., funding to support PPI in PhD research), and time management considerations (i.e., time involved in setting up and organising PPI meetings, collating feedback and writing reports). I have been fortunate that FibroIreland have provided some funding to support PPI meetings in Ireland, and venues at various locations in ROI have been provided free-of-charge* to facilitate these meetings.
For each PPI stage, advisors are provided with a summary of the meeting and their input, with stage outcomes and resulting impact outlined. Communication is maintained with the group through emails and during COVID-19 we set up a Facebook page to share nature images and maintain contact during lockdown. We have also begun to conduct some PPI sessions virtually through zoom, skype etc as lockdown has begun to ease.
As a health researcher PPI is invaluable in informing my research. Every contribution is helpful, and even the smallest input can be significant in influencing the research design. Developing good relationships and approaching PPI in an open and creative manner is key. People have different strengths and skills, in addition to perspectives to bring, which ultimately adds to the research design and process. In my experience there are always ways of involving people with a lived experience throughout the research process, it’s just about looking creatively, creating opportunities, and ultimately asking for people’s involvement.
Patient Advisor’s Perspective
From a patient advisor perspective, being involved in the PPI process has given me a feeling of inclusion, a place to share my experience of Fibromyalgia in the hopes to help others with theirs. I’ve gained new skills and have seen first-hand how a research project is designed, developed and carried out. Being a patient advisor is very different from being a research participant. As an advisor, your role is far more active – you work ‘with’ the researcher and give advice ‘on’ the activities. This focuses attention on what study content etc. is acceptable or may need to be changed, as only someone suffering with the condition could make those judgement calls. It can be very upsetting to face the ‘challenges/symptoms’ of Fibromyalgia when you are involved in research, as it makes the condition very real. There is also a time and logistics commitment which can be difficult for patients with cognitive and pain issues. However, this process overall has had a positive effect on me. I have gained insight into the condition itself; the process of research and the value PPI has for all. I feel empowered, equal and valuable. It has helped my self-esteem. By being involved, I feel I am part of the change, part of the solution, a path maker in understanding and perhaps managing this condition.
The researcher would like to thank FibroIreland for providing funding towards PPI in Ireland; An Gairdín Beo, Botanic Health, Loughrea family resource centre, Portmarnock Integrated Arch club for providing venues in ROI*; and all PPI advisors in ROI & UK whose contributions have been invaluable.