Work with patients to identify research to address their needs
The public value medical research and the benefits it brings them.
A MORI poll conducted in October 2008 found that 57% of the public have donated to a medical research charity at some stage, 22% in the last year, and 11% do so by regular standing order.
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Since AMRC was formally established in 1987, medical research charities have had a massive impact on patient benefit.
A very public benefit: 21 years of charity support for medical and health research and innovation, AMRC; 2008
Charity medical research and you»
Medical research charities provide a direct link to the public.
Many medical research charities have strong patient groups, so involving patients and the public in research is ‘natural ground’ for them. AMRC explored the different and innovative approaches to involvement in our member charities.
The Natural Ground report outlines our members’ experiences and draws out key learning points for organisations wishing to involve patients and the public in research in a meaningful way.
Natural Ground: Paths to patient and public involvement for medical research charities, AMRC; 2009
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Many charities have patient groups actively focused on research
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Charities offer patients the opportunity to be involved in setting research priorities.
Asthma UK has around 100 Research and Policy volunteers.
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Involving patients and the public in research can bring invaluable insights that ensure studies are relevant and people-focused.
Members of Parkinson’s UK worked with researchers on a pilot study.
User involvement in a pilot study to inform the development of a clinical trial, Paterson et al; 2005
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The public are keen to be involved in medical research.
Public involvement is particularly valuable in the design of clinical research, involvement increases recruitment to all types of research and there are signs that it is valuable in qualitative research.
INVOLVE draws together examples of how public involvement is conducted, and looks at what difference it is making.
Exploring Impact: Public Involvement in NHS, public health and social care research (PDF 451 kb) INVOLVE; 2009
A recent survey by The Wellcome Trust found that just under a quarter of adult respondents or their family members had taken part in medical research and up to 70% would be willing to take part in research – depending on what was involved.
Wellcome Trust Monitor survey of 1,179 adults aged 18+, interviewed in early 2009
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Interactions with patients can help us identify what research we need to pursue.
Medical research charities, with their direct link to patients, can work with industry to input into the development of research strategies and help identify and address aspects of disease and treatment that are important to patients.
Patient and advocacy groups work with pharmaceutical companies
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An Essential Partnership: Principles and guidelines for working with industry, AMRC; 2008
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Uncertainties about the effects of medical treatments mean that in some cases treatments could be doing patients more harm than good.
The UK Database of Uncertainties about the Effects of Treatments (UK DUETs) identifies where more research needs to be done into the effects of treatments.
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