I attended the recent ‘Getting the most out of clinical research: AMRC-NIHR workshop” at Charles Darwin House, London.
The aim of the workshop was to aid more collaborative working, between the third sector and NIHR infrastructure organisations. The agenda had a number of inspiring speakers, including Dr Russell Hamilton CBE, Director of Research and Development at the Department of Health and Dr Liz Philpott Head of Research at ARMC and was buzzing with representatives from charities and NIHR infrastructure.
One of the really poignant things I took away from the day was the value of collaborating with charities and the unique connection many charities have with service user and patient groups.
Professor Dave Jones, NIHR Newcastle Biomedical Research Centre (BRC) and NIHR Dean for Faculty Trainees spoke about the research he has been involved in. PCB (Primary Billiary Cirrhosis) an auto immune condition, affecting approximately 20,000 people in the UK. He spoke of a partnership between the BRC and the PBC Foundation, a charity which provides support and information to PBC sufferers, their families and friends.
The PBC Foundation supports with the recruitment of research subjects via their website, but in addition to this the partnership has helped Professor Jones and his team understand the condition further, and the priorities for this patient group. In addition to highlighting priority research areas, such as fatigue which are less obvious to health professionals and researchers, the partnership also brought to light the stigma people face with this condition due to the name (Primary Billiary Cirrhosis). This often leads other people to wrongly assume the condition is inflicted through use of alcohol. He described how these false assumptions not only cause problems for people socially, but in some cases can also lead to more active discrimination with people receiving diminished levels of care from health professionals and even being refused mortgages and life insurance. In response to this the PBC Foundation surveyed patients and health professionals asking if they would support an initiative to change the name of the condition, with a majority response in favour for a change. Last month EASL, the European Association for the Study of the Liver, supported the name change to Primary Billiary Cholangitis, with their American and Asian counterparts expected to follow later in the year. Not only is this a real victory for people living with the condition, this has raised awareness of the real priorities for people with PBC and also supported Professor Jones and his team to further the research by the recruitment of 10,000 patients. He attributes the engagement of such a significant number of people within research to the partnership with the PBC Foundation.
Another example was from Dr Laura Gray from the University of Leicester / NIHR CLAHRC East Midlands, who worked on the development of a diabetes risk score tool in collaboration with Diabetes UK. There is still thought to be 500,00 people in England with undiagnosed diabetes and a further third of the population who are thought to be at risk of developing type 2 diabetes in the future. The need for a quick and accurate way to assess their risk of diabetes is evident but although there were 70 risk tools available, only four were being used by people. So by working closely with Diabetes UK the Leicester Diabetes Self Assessment Risk Score was developed and is now recommended by NICE and promoted nationally by Boots and Tesco’s stores, something Laura believes would not have been possible without the partnership with Diabetes UK.
It just struck me how working through charities really is a way to connect with patient and public groups who are interested and passionate about support a cause. So by writing this blog I hope to encourage researchers to think about third sector organisations as key players to involve within research.