Far too few National Health Service Trusts in England are providing easy access to information on clinical-research opportunities.
Worse still, patients who show an active interest in research participation are often hitting a “brick wall” when they want to find out more.
These were the conclusions of a 'mystery shopper' investigation recently commissioned by the National Institute for Health Research Clinical Research Network (NIHR CRN). It involved to 82 hospital sites across 40 NHS Trusts in England.
Constitutional commitment
NIHR CRN wanted to see to what extent Trusts are delivering on the commitment in the NHS Constitution to promote and conduct clinical research.
The number of patients involved in NHS research has more than doubled since 2007, with a record 595,000 patients taking part in studies last year.
Yet the mystery shopper survey indicated that many Trusts “are doing little to raise general public awareness about local clinical research opportunities, or provide basic information to support patient choice”, NIHR CRN noted.
This left 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”.
Points of contact
At each site visited, the mystery shoppers looked at the basic points of contact for patients (reception desks, patient-advice services, patient-information centres, noticeboards and hospital websites) to assess whether patients had easy access to information about local clinical-research opportunities and how to get involved.
They found that:
• 91% of the NHS sites did not have information on clinical-research opportunities in the obvious places where patients would expect to find it (information boards/centres, in reception areas or waiting rooms).
• Only 34% of the sites visited had information about clinical research on their websites that was useful to patients.
• 46% of reception desks told the mystery shopper that they did not do research, or failed to offer any suggestions on what to do next.
• 55% of the sites were unable to provide useful information about clinical research through their Patient Advice and Liaison Service.
Research nurses
NIHE CRN put the discrepancy between these experiences and the significant improvement in research participation through the NHS in recent years down to its own efforts to instil a research culture in the health service.
In particular it pointed to the special funding the Network provides to NHS Trusts to cover the cost of research nurses and other clinical-research delivery staff who can identify and approach patients about relevant research opportunities.
Some way to go
Recent polls have indicated that 82% of the public feel it is important for the NHS to offer patients the chance to take part in clinical research, noted NIHR CRN chief executive, Dr Jonathan Sheffield.
"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,” he added.
The Network is 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”, Sheffield said.
At the same time, though, NHS Trust Boards “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 insisted.
To sharpen awareness and engagement, NIHR CRN plans to launch a resource pack for NHS Trusts, with materials that will help them promote research opportunities to patients.
