Briefing note three: Why involve members of the public in research?

Why involve members of the public in research?

No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.

Professor Dame Sally Davies, Chief Medical Officer (Foreword in Staley, 2009)

As well as the practical benefits of helping to ensure research quality and relevance, the underlying reasons for involving members of the public in research are also informed by broader democratic principles of citizenship, accountability and transparency. The reasons for involvement might not always be clearly defined and at times will overlap each other. However understanding why you want to involve members of the public in your research will help you think who you want to involve and how you want to involve people.

Democratic principles

It is a core democratic principle that people who are affected by research have a right to have a say in what and how publicly funded research is undertaken. Public involvement is an intrinsic part of citizenship, public accountability and transparency. In addition public involvement in research can lead to empowering people who use health and social care services, providing a route to influencing change and improvement in issues which concern people most.

Research quality and relevance

Providing a different perspective

Members of the public might have personal knowledge and experience of your research topic or be able to provide a more general perspective. Even if you are an expert in your field, your knowledge and experience will be different to the experience of someone who is using the service or living with a health condition.

Improving the quality of the research

This might be by:

making the language and content of information provided more appropriate and accessible (for example in questionnaires, and patient/participant information leaflets)
helping to ensure that the methods proposed for the study are acceptable and sensitive to the situations of potential research participants
helping to ensure that research uses outcomes that are important to the public
increasing participation in research through:
– making the research more appropriate and acceptable to potential participants
– improving the information provided so people can make informed choices
– helping to include seldom heard groups.

As healthcare professionals we mustn’t assume we know more than anyone else does! You have to recognise that other people are experts and accept that other people have skills that will make your project work.

(Swithenbank 2010 page 15)

Making the research more relevant

For example through:

identifying a wider set of research topics than if health or social care professionals had worked alone
suggesting ideas for new research areas
ensuring research is focused on the public’s interests and concerns and that money and resources are used efficiently
helping to reshape and clarify the research.

In addition to these principles there is a growing interest in public involvement by research funders and research organisations as well as the commitment to public involvement in health and social care policy.

Interests of research funders and research organisations

Several funding bodies, as well as research ethics committees ask grant applicants about their plans for public involvement with an expectation that if they are not involving members of the public in the research then they need to have thought through why they have made this decision and explain the reasons.

For example, the National Institute for Health Research (NIHR) have developed a standard application form to be used by all their research programmes, including individual training awards. One of the sections on the form asks applicants to describe how they have involved the public in the design and planning of their study as well as their plans for further involvement throughout the research and if not, to explain why. Applicants are also asked to provide details of the budget they have allocated for public involvement in their research. Responses to these questions will be considered by the reviewers, research panels and boards (which increasingly include members of the public) and will influence funding decisions.

The National Research Ethics Service (NRES) will ask about the plans for public involvement in your research if you apply for ethical approval, and it will be part of their assessment process. NRES expects the involvement of the public in research, as it can help ensure that research planned is ethical, relevant and acceptable from a public perspective.

Find out more about public involvement and research funders:

NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)

NIHR Central Commissioning Facility (CCF)

NIHR School for Social Care Research (SSCR)

Asthma UK

Multiple Sclerosis Society

Health and social care policy commitment and initiatives

There have been a number of NIHR health and social care research initiatives that emphasise the importance of public involvement and health policy documents that demonstrate the commitment to public involvement.

In the foreword of the 2009/2010 NIHR Annual Report Earl Howe, Parliamentary Under Secretary of State for Quality, comments:

Moreover, in a healthcare system in which patients and the public come first, the Government is committed to supporting the emphasis that the NIHR puts on patient and public involvement in research.

The commitment to research and public involvement in research is referred to in the Government’s White Paper Equity and Excellence: Liberating the NHS published in July 2010 (para 2.3):

This [shared decision-making] is equally true of the partnership between patients and clinicians in research.