Many British NHS patients are hitting an information "brick wall" when it comes to finding out about clinical research, according to the results of a mystery shopper investigation commissioned by the National Institute for Health Research Clinical Research Network.
The investigation involved visits to 82 hospital sites across 40 NHS Trusts in England. For each of these, mystery shoppers examined the basic points-of-contact for patients (reception desks, patient advice services, patient information centers, notice boards and hospital web sites) to assess whether patients have easy access to information about local clinical research opportunities, and how to get involved.
Results showed 91% of the NHS sites visited did not have information on clinical research opportunities in the obvious places where patients would expect to look (info boards/centers, in reception areas or waiting rooms). Only 34% of the sites visited had information about clinical research on their web sites that was useful to patients. Forty-six percent of reception desks told the mystery shopper they did not do research or failed to offer any suggestions about what to do next. And more than half of the sites (55%) were unable to provide useful information about clinical research through their Patient Advice and Liaison Service.
Clinical research is considered to be a core business for all NHS Trusts and is in the NHS Constitution. This includes a commitment to the promotion and conduct of clinical research, and a pledge that the NHS "will do all it can" to make patients aware of relevant research opportunities. The NIHR Clinical Research Network mystery shopper initiative set out to test how well NHS Trusts were delivering on this Constitutional pledge with regard to clinical research.
The NIHR Clinical Research Network is working to develop a research culture in the NHS. It does so by providing NHS Trusts with special funding to cover the cost of research nurses and other clinical research delivery staff, who identify and approach patients about relevant research opportunities. As a result, the number of patients involved in research has more than doubled since 2007, with a record 595,000 patients taking part in studies last year.
However, the mystery shopper project shows most of the NHS Trusts visited are doing little to raise general public awareness about local clinical research opportunities or provide basic information to support patient choice. This leaves most patients unaware about the research possibilities that may be open to them, unsure about what to do if they are interested in getting involved and completely dependent on their clinicians for any information about local opportunities to participate in a trial or study.
NIHR Clinical Research Network's chief executive, Dr. Jonathan Sheffield, said, "From recent polls, we know that 82% of the public think it is important for the NHS to offer patients the opportunity to take part in clinical research. But we also know that there is some way to go before every doctor, in every department of every hospital, thinks about research as a possible treatment option and discusses it with his or her patient. We are doing everything we can to address this on the wards and in the surgeries, by working with doctors and nurses and encouraging them to engage with research. But NHS Trust Boards also need to step up to the mark, and make sure that they provide patients with the information they need in order to ask their doctor about research and find out if it is suitable for them.”
He continued, "All too often it seems that patients who ask about clinical research hit an information brick wall. Given the importance of clinical research in improving the quality of patient care, and helping the NHS to spend its budget wisely on treatments that really work, has got to be a real concern."
As a result, the NIHR Clinical Research Network plans to launch a resource pack for Trusts, offering materials to help them to promote research opportunities to patients.