Emergency admissions to hospital are expensive to the NHS and very distressing for patients and their families, with around 350,000 cases in Wales last year. Now a Swansea University-led research team, which focuses on improving emergency care, has been commended for its work involving the public in research, winning an award from the National Institute for Health and Social Care Research.
The team forms part of the TRUST (Thematic Research for emergency, UnScheduled and Trauma care) network, 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.
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.
Research into emergency care is particularly important in Wales, which has the highest proportion of older people in the UK. Older people are the most likely to be admitted to hospital as an emergency. Many admissions are for people with long-term chronic conditions:
• 45% of all hospital admissions in Wales are emergencies
• 23,000 emergency admissions (2011/12) for diabetes, heart disease
• One-third adults in Wales with a chronic condition –highest in UK
• £1750 average weekly cost of a bed in hospital.
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”
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.”