| Home | Introduction1 | Contacts | Services | Information | News | Courses/Advice | Resources | Links |
Services > Patient and Public InvolvementThe value of engaging service users is widely acknowledged. Most recently, Best Research for Best Health: A new National Health Research Strategy (Department of Health 2006) highlighted the importance of involving patients and members of the public in the research process. This position is supported by other organisations, including: The National Cancer Research Institute, the Medical Research Council, the Health Technology Assessment Programme and the Cochrane Collaboration. User involvement is a requisite of applications to funding bodies such as the Clinical Trials Advisory and Awards Committee (CTAAC), the Department of Health (Research for Patient Benefit) and Trent RDSU Designated Research Team (DRT) awards.
User involvement refers to members of the public being active partners in the research process, rather than being involved purely as sources of data for research. Members of the public include: patients, informal (family) carers, users and potential users of health and social care services and organisations that represent people who use services.
INVOLVE is a national advisory group, funded by the Department of Health to promote and support active public involvement in NHS, public health and social care research. INVOLVE has just published a new Public Information Pack and leaflet on Good Practice, which may be ordered from their website. They describe three levels of service user involvement: Consultation: seeking people's views and using these views to inform decision-making; such as asking for comments on research proposals. These may not necessarily be adopted, but may influence the study. Collaboration: active, on-going partnership with members of the public in the research process; for example: generating research ideas, reviewing literature, participating in steering committees, lay reader, ethics and research governance panels, gathering and interpreting data, negotiating research findings and dissemination activities. User-controlled research: service users, rather than 'professional' researchers control all the stages of the research process. Service users may not necessarily undertake every part of this themselves nor are research 'professionals' necessarily excluded.
Different types of involvement will be appropriate for different research projects; however, involving service users should be more than a 'tick box' exercise to satisfy the requirements of particular policies or research commissioners. Involving service users in research is not an added extra - it is good practice. According to INVOLVE engaging members of the public in a meaningful way leads to research that is: more relevant to people's needs and concerns, more reliable and more likely to be used. An inclusive approach assists in ensuring that a variety or perspectives, which should take into account diversity and equality issues, are considered.
The value of working in a collaborative way with members of the public is illustrated by one project in which Amanda Clarke from Trent RDSU is involved: 'extending peer education for end-of-life care: working and learning from older people', which is funded by the Burdett Trust for Nursing. The research team includes volunteers, trained as peer educators to share information and lead discussions with their communities. A guide about end-of-life care, written and piloted with their help, is used to encourage these discussions and facilitate the development of new resources. The volunteers have enjoyed the experience of working collaboratively with other researchers as shown by their comments below: "I was very, very nervous at first, but everything just fitted right into place." "I felt we were among equals and our voices were heard. We listened to each other." "I'm not an academic and often wondered if anything relevant to my way of life comes out of research, but this is relevant and valuable." Although these comments demonstrate the potential benefits of user involvement there are also challenges.
Members of the public and service users may not want to participate in all stages of the research process; in the project outlined above, one volunteer did not want to facilitate discussion groups, but was happy to take notes. Some researchers may be uncomfortable with sharing control of the research process with service users. Therefore, clarity of the service users and 'professional' researchers role should be established from the start. In addition, there are implications for resources since collaboration from the time consuming and costly; for example, reimbursing travel expenses, paying for people's time and expertise, training, supporting and mentoring. Principles of good practice in active public involvement in research should be followed: for example, see Boote, Barber and Cooper's article on 'Principles and indicators of successful consumer involvement in NHS research' in NHS Research in Health Policy, February 2006 or INVOLVE. Engaging service users in an appropriate way requires committment and ongoing evaluation to ensure that best practice is adhered to and continually improved.
If you would like more information about user involvement, Trent RDSU has considerable experience of involving patients and members of the public in different ways in a diverse range of research projects. There is a dedicated section of information and resources on the Trent RDSU website and Research for Patient Benefit workshops continue to be run throughout the Trent region - a key theme of which is user involvement. In the Autumn, a one day introduction to actively involving members of the public in NHS, public health and social care research will be held in Sheffield. Trent RDSU also offers user involvement bursaries.
North Trent - Covering South Yorkshire and North/North East Lincolnshire Mid Trent - Covering Derbyshire, Nottinghamshire and Lincolnshire South Trent - Covering Leicestershire, Northamptonshire and Rutland |
Website Coordinator
Please contact the website coordinator if you have problems with any of the links or questions, comments and suggestions about the content.