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.
Currently
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.
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.
Australia
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.
Canada
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.
America
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.
Europe
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
Denmark
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.
PLUS:
Health
Talk Online established in UK to gather people’s experience of care and
research has partnerships in Australia and
Canada.
Sources
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
Joseph Rowntree Foundation http://www.jrf.org.uk/ http://www.jrf.org.uk/publications/browse/category/u#user-involvement
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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