Involving people in research is about giving the people who are meant to benefit from this research a say in shaping the research agenda. It requires lay people to be involved on an equal basis to academics and health care professionals. This includes not just participating in research that has been initiated by academics, but also in shifting the power balance so that users and carers can initiate research and work collaboratively with academics.
Researchers and clinicians often experience healthcare services from a specialised and expert point of view. Sometimes this means they stop noticing things that seem obvious to patients and members of the public, or they are too well trained to think of the more basic questions.
Patients, service users, carers and family members provide a different way of looking at things that can ground the discussion in real and practical experience. They can ask the seemingly obvious questions and provide insight into their experience as service users.
Patient advisor Leon Farmer tells us what being part of research has meant to him:
In July a group of nine public collaborators met with our researchers in an online workshop to discuss the conditions that will be investigated in the study. Meeting this way meant that people with challenging health conditions, from across the country, could take part and have their say from the comfort of their own home.
The purpose was to review the list of long-term conditions put together by researchers and health professionals, to see what was missing. This list is a vital part of the GEMINI study and will underpin all our further analysis. The list needs to be as complete as possible, and the PPI workshop has been a key part of that, in particular to help identify conditions of real importance to patients. The initial list was based on conditions found in the data sources available to researchers.
Over two hours public collaborators discussed conditions that they felt were missing and came up with 59 suggestions. For each suggested condition researchers considered:
This helped to decide which conditions could be added to the GEMINI condition list. From the 59 suggestions 28 have been added to the study.
You can read the full report to see how the decisions were made:
Professor Tim Frayling, lead researcher on the project, said: “It was great to involve patients in the GEMINI research. It was especially important to hear from them about the sex specific conditions, such as enlarged prostate, that we had not paid enough attention to before!”
Elsie Tata, GEMINI Researcher said: “I’m very grateful for the PPI workshop. Having an open and honest discussion together meant we were able to identify weaknesses in our research without judgement, and figure out how to improve them.”
Leon Farmer, GEMINI co-investigator and public collaborator said: “The Gemini team aims to investigate conditions that patients and the public consider important. Mary, my fellow co-investigator, and I suggested several conditions to be included in the developmental phase but we wanted to widen the breadth of opinion on which conditions to include in the main study. We held a workshop with six other public collaborators.”
Elsie, our researcher focussed on the Coding of conditions, gave a brilliant presentation, including an explanation of the criteria used when considering including a condition.
Two of the main criteria were:
Aware that some of the conditions we suggested might not be included if they didn’t fit the criteria, we considered different body systems such as the brain and mental health or the circulatory system and had very lively discussions producing suggestions of 59 conditions to be considered in the study. 28 of these were included as a result, clear evidence of how the patient or public has a voice in shaping research.
Mary Mancini, GEMINI co-investigator and public collaborator said: “It was good to hear the experiences of other people who have multimorbidity and see the GEMINI researchers take these on board. I found the workshop interesting because I heard about conditions I didn’t know about and was surprised to see the range of conditions and how they affect people, such as tinnitus. I was struck by the discussions around conditions that only affect women or men and how, before the workshop, these had not been given enough consideration by the research team. One thing that stood out was hearing the passion of people and the work they do to get recognition for their conditions. Afterwards, at the GEMINI project meetings, it was encouraging to hear the researchers discuss the additional conditions and see them think deeply about whether they could be included in the project.”
Would you like to join our Patient and Public Involvement group? Want more info? We’d love to hear from you!