Working with the public to generate ideas for health research

Alongside CLAHRC West’s call for research proposals in the spring of 2016, Andy Gibson and Rosie Davies from the People in Health West of England public involvement team ran four ‘generating ideas for health research’ workshops around the region.

Members of the public who came along had the opportunity to develop the ideas and issues they felt were important, into research questions. The workshops were lively and positively received by those who came along. The ideas developed were submitted to CLAHRC West for consideration by researchers, and we hope that some will be developed into new research projects. In this way the involvement team are helping researchers to identify research questions that are important to patients, service users and families.

Twenty eight people attended the workshops in February and early March which took place in Bath, Bristol, Gloucester and Swindon. Thirty one research ideas were submitted. They will be screened first by two members of the People in Health West of England team with two public contributors, and then reviewed by the Director and senior researchers at CLAHRC West. The outcome of this screening process will be announced by the autumn of 2016.

The workshops used a PICO (Population, Intervention, Comparator, Outcomes) framework to help participants structure their ideas. First of all participants shared their ideas in small groups and recorded key points. The PICO framework was then introduced and people were supported to apply it to their ideas. This helped to clarify who would benefit from the research they proposed, what they thought would help, such as a new treatment, service organisation or way of working, what people currently received and how they thought the research they proposed would improve people’s health. At the end of each workshop the participants were invited to submit their ideas for consideration by CLAHRC West.

People generated questions about health problems affecting lots of people, including heart conditions, mental health problems, stroke and dementia. Some ideas were focused on rarer conditions and more specific problems like ear hygiene, the diagnosis and treatment of thyroid conditions, support for new mothers to breast feed, and the emotional impacts of loss of eyesight.  One focused on the potential for increased access to hydrotherapy pools for people with long term conditions like muscular dystrophy to improve pain management, and maintain strength and flexibility.

Several ideas focused on the benefits of exercise and weight loss for back problems, joint problems and improving mental wellbeing. Another theme was a focus on people with several health conditions and family concerns that no-one seemed to have an overview about all the drugs being taken, worries about potential drug interactions, multiple-drug side effects and a potential waste of prescriptions and resources. Other general concerns were about the experience of older patients being admitted to hospital who were unsure about hospital routines, who was who and what all the different uniforms signified, and these problems leading to increased dependency and loss of confidence. One idea focused on the benefit of early emotional support to families with experiences of emotional problems or where there had been abuse.

Almost all participants in these workshops were members of the public and 46 per cent were men.  Most participants were white / white British and 25 per cent described themselves as having a disability.

For more information about these workshops contact Andy Gibson on Andy.Gibson@uwe.ac.uk.