The team forms part of the TRUST (Thematic Research for emergency, UnScheduled and Trauma care) network - a Registered Research Group funded by NISCHR - which focuses on emergency care and is led by Professor Helen Snooks of the College of Medicine at Swansea University.

TRUST has developed considerable expertise in involving the public in research.For example it has produced the first published guidance for involving service users in clinical trials.

NISCHR has funded Cynnwys Pobl: Involving People, a patient, service user and carer involvement research network for Wales within the NISCHR Clinical Research Centre.

The TRUST team recently won the Involving People case study award at an event organised by NISCHR CRC. The award was for their work on the SAFER2 project, which is looking at the best ways to support older people who have fallen and called 999.

The team aims to get people involved in the whole research process because they bring experience of using services as patients or carers, to complement academic and clinical expertise. This involvement is different from patients who are research participants and provide data to be included in the results of a research study.

Picture:  Mr Alun Toghill, a service user who works on research projects, with Marina Koniotou from the SAFER 2 research trial team.

‌People who are involved in carrying out research get involved in the following ways:

•    Designing a research project
•    Sharing in decisions at key stages of carrying out high quality research
•    Advising on layout and clarity of research tools (eg websites,  questionnaires, interview scripts)
•    Analysing results, offering different insights compared to a researcher
•    Disseminating findings, including into outlets where key groups can see them, such as newsletters
•    Taking part in meetings as a member of the research team and speaking at conferences

People often require training and support to be able to carry out these roles, which is why the Swansea team runs a network called SUCCESS, which is a pool of people with different conditions, such as diabetes heart disease or arthritis, who use health services. SUCCESS stands for Service Users with Chronic Conditions Encouraging Sensible Solutions.   

The team train members of the SUCCESS network, equipping them with the skills they need to work effectively as part of the research teams.   Between them, network members have worked on around 40 different research studies.

Comments from network members:

“We are hugely motivated with a strong desire to make things better – we are not to be ignored”  

“We’re all treated as equals – we’re not just the token older person”

Lead researcher Bridie Evans, of the College of Medicine at Swansea University, explained the benefits of involving service users in research:

“It ensures that research projects take account of the patient perspective, and that projects are as relevant to patients as possible.  It brings real experience into the research process.

The quality of the research is definitely better when service users work alongside researchers – we say that it’s better done together”

Picture:  Bridie Evans, researcher in the TRUST team who works on involving people in research
 
Angela Martin from NISCHR, Lead for Public Involvement and Engagement and contract manager for the TRUST network, said:

“TRUST has been an exemplar of public involvement.  They have consistently involved service users in developing and undertaking research.  

As NISCHR looks to the future, lessons learned and examples from the work of TRUST will be used to inform future developments.”

Involving People supports health and social care researchers based in Wales to make public involvement an essential part of their work. They do this by connecting researchers with the ‘Involving People Network’ - members of the public who can bring their knowledge and experience to the design and development of research. www.involvingpeople.org.uk

Involving People is part of the National Institute for Social Care and Health Research Clinical Research Centre (NISCHR CRC).

Natalie Simon, NISCHR CRC Public Involvement Team Lead, said “we established our Case Study Competition to give members of the public an opportunity to describe how their involvement was having a positive impact on research studies. The winning entry was a strong example of researchers, network members and public involvement organisations working together to deliver an excellent model of public involvement.”