Thursday 12 June 2014

A brief summary of public involvement in research

These notes provide a brief summary of concept and evolving nature of actively involving the public in research governance, process and practice This is developing momentum in many countries across the world. The summary was prepared for the Ca-Pri Conference in Canada.


The earliest recorded example that mentions the public being equal partners with researchers is an article from 1976 on obstetric practice written by Sir Iain Chalmers. The Oxford Consumer Group reported that the public made more adverse comments about maternity services than any other branch of the National Health Service (NHS). From its inception in 1978, lay members were included in the National Perinatal Epidemiology Unit’s Advisory Group.

Individuals from other patient communities also began to ask questions, advocate for greater involvement and make demands to have a greater say in research. These movements for change can be found particularly in the HIV/Aids, Mental Health and Cancer communities. At the same time there were discussions amongst researchers, policy makers and government about how best to engage and involve the public.

Twenty years later in 1996, the UK set up the Standing Advisory Group on Consumer Involvement in the UK’s National Health Service Research and Development (NHS R&D) Programme. This later becomes Involve. The Group's first report to the Central Research and Development Committee stated…

The involvement of consumers in research changes the priorities for research. Simply having consumers present at research committee meetings can have a powerful effect - they remind researchers of the purpose of their work. Yet, with a few exceptions, consumers have had little say in how research is prioritised, undertaken and disseminated.

In 2001 the Consumer Liaison Group (CLG) was established in cancer research as was a similar group with the Medical Research Council. There is now a much greater presence of members of the public on committees, boards and at conferences as speakers and workshop facilitators. (A broader account of the CLG can be found here)

The James Lind Alliance Priority Setting Partnerships provide an effective approach to identify unanswered questions and set research priorities. In 2006 INVOLVE became part of the National Institute for Health Research (NIHR) in England.

The Exploring Impact Report offers examples of the difference involvement is making. More recently a study by King’s College London showed that involving mental health patients in the design and implementation of research programmes increased the likelihood of studies recruiting to target.

Much of the advice and literature reflects the process of involvement rather than its purposes - from improving patient information leaflets through to the more democratic principles of increasing openness and transparency. The latter being most relevant when the source of funding is public money gathered through donation or taxation. The former simply practical.


The National Institute for Health Research, is reviewing public involvement in research and is inviting views and comments on how it can build on its achievements in public involvement so far to create the sort of active collaboration between the public, researchers and clinicians essential to the delivery of its future ambitions for research and a healthier nation.

The British Medical Journal is now also demonstrating leadership in this sphere of patient revolution.

Some Examples of Public Involvement in Research
from Across the World

United Kingdom

INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by and part of the National Institute of Health Research (NIHR).

In Wales the organisation Involving People helps bring patients and researchers together. Scotland has focused more on getting people into research with SHARE.


Active involvement in Australia is known as consumer and community participation in health research. The website, Involving People in Research offers many very practical resources and advice.

The Consumer and Community Participation Program is a joint venture between The University of Western Australia's School of Population Health and the Telethon Institute for Child Health Research.


The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Composed of 13 Institutes, CIHR provides leadership and support to more than 13,200 health researchers and trainees across Canada.

The Strategy for Patient-Oriented Research (SPOR) is a coalition of researchers, charities, policy makers and patients, to ensure that the right patient receives the right intervention at the right time.


The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.


The European Patients' Academy (EUPATI) provides scientifically reliable, objective, comprehensive information to patients on the research and development process of medicines. It will increase the capacity of patients and the lay public to be effective advocates and advisors


NICE Welfare takes up the challenges that relate to the development of inclusive and innovative welfare societies, as they are described in Research2020 and Horizon2020. The project combines fields of research within the social sciences, statistics and medicine that are emphasized as central in both research plans.


Health Talk Online established in UK to gather people’s experience of care and research has partnerships in Australia and Canada.


Chalmers I. British debate on obstetric practice. Pediatrics 1976;58:308-312
Chalmers I. Minimising harm and maximising benefit during innovation in healthcare: controlled or uncontrolled experimentation? Birth 1986; 13:155-64
Mental health and survivors' movements and context:
Research: What’s in it for Consumers – report published by NHS R&D
Ennis, L. et al. Impact of patient involvement in mental health research: longitudinal study British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818

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