The following is the news release put out today by the National Institute for Health Research (NIHR) Clinical Research Network with new survey data about public opinion on clinical research and the role of the NHS.
A new survey conducted on behalf of the National Institute for Health Research Clinical Research Network (NIHR CRN) shows that 89% of people would be willing to take part in clinical research if they were diagnosed with a medical condition or disease – with an all-time-low figure of just 3% saying they would not consider it at all.
The survey also revealed that 95% of people said it was important to them that the NHS carries out clinical research.Last year over 600,000 people took part in research which aims to improve diagnosis, treatment and care of patients in the NHS. The growing importance of clinical research to the general public and their increased willingness to take part suggests that this number is set to rise.
Commenting on the findings of the survey, the NIHR Clinical Research Network’s chief executive, Jonathan Sheffield, said:
“It is important that we make information about clinical research opportunities widely available to NHS patients, through as many routes as we can. This survey shows that people want to participate and we need to ensure they are made aware of the research opportunities available to them. Through our local Clinical Research Networks, we will continue to actively work withal parts of the NHS to promote research opportunities for patients.
“The survey also shows that although 77% of people are awarethat clinical research happens in hospitals, they are less informed about opportunities to take part at their local GPs – even though our data shows that one in three GP practices is research active.
“Clinical research happens in the majority of healthcare settings from hospitals to Ambulance Trusts and from Mental Health Trusts to Community Hospitals. I would urge people interested in research to examine all opportunities as anywhere there’s an NHS patient, there should be an opportunity to get involved in research. Part of our role is guiding healthcare professionals to ensure that they are promoting research and we have produced materials to help them do that.”
When asked about motivating factors for taking part in clinical research, nearly half of the people surveyed said that receiving a diagnosis for a medical condition or disease would be a factor most likely to motivate them. One in five said that they would be motivated if a friend or family member was seriously ill and an appropriate treatment had not yet been developed. On this Jonathan Sheffield said:
“It is important to know that many research studies also involve healthy volunteers. We see a lot of carers, friends and family members of patients who are diagnosed with a condition or disease come forward to take part in research. It can be reassuring for them to be able to contribute something which could help a loved one.Research gives people the opportunity to affect future care, whether they are affected themselves or not and patients can find that very empowering.”
Simon Denegri, NIHR National Director for Patients and the public and Chair, INVOLVE said:
“Patients, carers and their families want to see their local NHS carrying out research to improve care and they want to help to make this happen. That is clear from this survey as well as the hundreds of thousands of people who volunteer every year to take part in clinical research.
“Our hospitals and GP surgeries need to be makinginformation readily available to patients so that they know it’s ‘OK to ask’ about research. The research we do with patients today is the quality care that our NHS will deliver tomorrow.”
Minister for Life Sciences George Freeman said:
“The NHS provides a unique setting for the development of new treatments that can bring real benefits to patients. We have world class research facilities and it is clear that patients want the opportunity to take part in clinical trials. Ensuring that the NHS continues to embrace research will help us realise our ambition of making the NHS is the best health service in the world."
Patients interested in research can visit: http://www.crn.nihr.ac.uk to find out more about taking part and see what research is happening in their local area.
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NOTES TO EDITORS:
About the NIHR Clinical Research Network
The NIHR Clinical Research Network is part of the National Institute for Health Research. We provide researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part. This practical support includes:
• reducing the “red-tape” around setting up a study
• enhancing NHS resources, by funding the people and facilities needed to carry out research “on the ground”
• helping researchers to identify suitable NHS sites, and recruit patients to take part in research studies
• and advising researchers on how to make their study “work” in the NHS environment.
Patient case study
Lucy Norman was diagnosed with Parkinson’s aged 38 when she began to struggle with her job as a former NHS PA in London. After taking part in research Lucy’s quality of life has greatly improved. Lucy now volunteers with charity Parkinson’s UK and is involved in village life, from being co-chairwoman of the village hall management committee to helping run the monthly market.
Angus, Lucy’s husband, aged 64, also took part in the five-year study alongside his wife Lucy as a healthy volunteer, at Oxford’s John Radcliffe Hospital. The study is looking at a test to speed up early diagnosis for Parkinson’s sufferers.
“Taking part in the study was so beneficial because it was something that I could do personally to help Lucy,because sometimes you can feel helpless in situations like that. The opportunity to take part and give something back really illuminated the whole concept of clinical research for me.
“I understand how important and valuable it is now. And it wasn’t hard at all; I simply took the same tests that Lucy did. It’s something we can do together for Parkinson’ssufferers. It may seem like a small contribution in the world of clinical research, but personally, it’s a big contribution for me, to help my wife and others like her with medical conditions – and that’s a fantastic achievement.”
• http://www.crn.nihr.ac.uk – Website for the Clinical Research Network (CRN)
• http://www.crn.nihr.ac.uk/can-help/patients-carers-public/ – The CRN’s general patient and public information pages
• http://www.nihr.ac.uk/get-involved/ok-to-ask.htm – About the NIHR’s OK to ask campaign
• http://www.crn.nihr.ac.uk/patientstories – About the CRN’s Patient stories campaign
For interviews, images and more information: