User involvement in research is not a new phenomenon. It has been practiced for many years with good results in other countries, particularly in Great Britain. The Department of Health has called for a greater degree of user participation in this country. The regional health authorities have therefore been asked to develop guidelines and introduce measures to increase user participation, as well as to introduce a requirement to state the reasons why users have not been involved in the planning and completion of research projects. Increased user participation is one of ten focus areas in the national report ‘HelseOmsorg21’. NYTT!!
Who are the users?
Users in this instance are those who benefit from the research results; primarily patients. Next-of-kin can also be considered users when they act on behalf of the patient, e.g. if the patient is a child, unconscious or suffers from dementia.
Note! Patients included in clinical trials are not considered as users.
Why include users – how can they contribute?
The primary goal of user participation is increased impact and quality of research. Research results have a greater impact and are implemented sooner if they are seen as useful to patients and relatives. Moreover patients have personal experience of particular illnesses, and therefore tend to give a more general perspective on issues within the research area. Professionals tend to have a different perspective and experience to patients who utilise a service or live with a condition. Finally, user participation has the important function of contributing to a democratisation of research by allowing the people who it affects to have an impact on publically financed research.
Users can participate on a strategic level, e.g. in steering groups or on other boards, or they can be more directly involved in research projects.
They can be included in different stages of the projects, e.g. planning, completion and dissemination of results (without being research participants). They can:
· Be members of steering groups
· Take part in the development of questionnaires
· Contribute to improved research design
· Contribute to increased recruitment of patients
· Contribute to improved participation among research participants during the project
· Contribute to dissemination of research results
How to get in touch with users
The hospitals’ user groups will appoint members to strategic councils and boards. Users for research projects may be identified by various means. Some hospitals will have user panels / patient advice committees for this purpose. User organisations in the subject area or the patients themselves may also be contacted.
Which research projects require user participation?
If users have not been involved in the planning and completion of research projects, the Department of Health requires a statement of why this is the case. Helse Sør-Øst RHF therefore requires a statement in every application for research funding about whether users are involved in the project, and if they are not involved, an explanation of why this is the best course of action.