What should I say about user involvement?

There are no unique definition of user involvement in health research or care. You may strengthen your rationale for user involvement in your project by applying some of the points below.

Three types of reasons for involving users in research *):

The epistemological argument states that health research can benefit from the experiential knowledge and personal insights of patients, carers and service users.
The moralistic argument states that the public have a right to be involved in any publicly funded research that may impact on their health status or the services that they receive.
The consequentialist argument states that public involvement helps to improve the quality, relevance and impact of health research.

You may argue along these line about why you will involve users.

You may define the kind of involvement:

consultation (where researchers seek the views of the public on key aspects of the research)
collaboration (an ongoing partnership between researchers and the public throughout the research process)
“publicly led” (where the public designs and undertakes the research and where researchers are invited to participate only at the invitation of the public) **).

You can also define benefit or impact of the user involvement on:

Research or research agenda
Care or practice
Professionals, care takers or family
The individual e.g. the patient
A group of users e.g. users with the same disease
A user organisation
The public in general
Better health, less pain
Health care services
Society and politics

User involvement will vary considerably with the kind of disease or health condition on your research agenda. You should adapt your rationale for user involvement to the actual user/patient group of your research. Typically, chronic diseases will require a different kind of user involvement than acute non chronic conditions.

Individual patients or family members will probably have a personal motivation for their involvement i.e. they want something back for themselves. Organisations have a different focus and motivation for participating. The outcome of these kinds of user involvements should be described according to their motivation and on what level impact may be expected.

Bottom line:

Why do you involve users?
What kind of users do you involve?
How will your research benefit from the user contribution?
How will the users benefit from participating?
How will the user involvement have a wider impact (from individual to society)?

AND if you are doing research where you will argue that user involvement is less important you may use the above to specify reason for not involving users in one or all of the phases of your research. However even if users will not be directly involved you should argue that there are users or stakeholders that will benefit from your research and that there is a need for your research.

*) Boote J, Wong R, Booth A. 'Talking the talk or walking the walk?' A bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expect. 2012 Oct 4; doi: 10.1111/hex.12007

**) 8. Boote J, Baird W, Sutton A. Public involvement in the design and conduct of clinical trials: a narrative review of case examples. Trials. 2011;12(Suppl 1):A82. doi: 10.1186/1745-6215-12-S1-A82.

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