Public Views of Opportunities to Take Part in Research

There is a growing evidence base of patients and the public wanting to know more about research. 

Information4Access is way in which Trusts and the public can begin to work together to make sure that research opportunities are available to more people.

The following pulls together some of the key reports and findings over the past year.

UK Clinical Trials Gatewa 

In 2012, the NIHR asked Simon Denegri, the NIHR National Director for Public Participation and Engagement in Research, to review the UKCTG from a patient perspective.  His report and recommendations are based on the results of a patient and public feedback survey.

Simon Denegri, NIHR National Director for Public Participation and Engagement in Research, says:
“Patients and the public see the UKCTG as an important initiative to help people find out about and take part in clinical trials. Nevertheless as the results of the survey shows, there is a lot more we need to do to so that the UKCTG can become a tool that really supports patient choice in research. It is early days and I am looking forward to working with patients and other partners to improve the service and develop a bold vision for UKCTG for the future.”

Please note the public and patient survey is now available at:

Mystery Shopper - campaign

New report shows 91% of Trusts surveyed are not providing information to support patient choice

Many 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 published this week.

The mystery shopper investigation was commissioned by the National Institute for Health Research Clinical Research Network, and 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 centres, noticeboards and hospital websites), to assess whether patients have easy access to information about local clinical research opportunities, and how to get involved.

Results showed that:
• 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/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 about what to do next

• More than half of the sites (55%) were unable to provide useful information about clinical research through their Patient Advice and Liaison Service

National Cancer Patients Survey 2011-12 - See Pages 57-59 

Three new questions were asked about research, with 33% of patients saying that taking part in research had been discussed with them. Of these, 95% were glad to have been asked. Of the patients who were not asked about research, 53% said they would have liked to have been asked. 

Assessing Public Attitudes to Health Related Findings in Research 
Wellcome Trust Report - April 2012

During research involving human participants, researchers may find something that has direct significance for a participant’s health; for example, revealing an undiagnosed disease or an increased risk of illness. There is limited understanding of public attitudes towards these health related findings.

A One Poll survey - 2012 carried on behalf of NIHR Clinical Research Network

Survey 1

To question members of the public on some factors relating to understanding of, and attitudes towards, clinical research, with a view to using the findings in PR material
1000 adults in England

Key findings and messages

Many people don't realise that clinical research is part of the core work of the NHS

  • Whilst 48% of people "expected" that the NHS would be undertaking clinical research, only 21% of people said they know it is an official requirement 
  • That means there is much work to do to make patients aware of their right to research under the NHS constitution
  • People aged 18-24 were least likely to know that research is a key activity for the NHS

The survey shows people think it is important for the NHS to offer opportunities to take part in clinical research, so doctors can decide which treatments work best for patients

  • 82% of people overall rated it "important" for the NHS to offer patients the opportunity to take part in suitable clinical research studies. (Only 3% said it was unimportant, with 15% undecided).
  • The survey results showed that people are more likely to think that clinical research is important the older they get (31% of 18-24 year olds rated research opportunities as very important, compared with 58% of those in the 55+ age range)

Only a small minority of people say they would never participate in a research study
  • Just 7% of people surveyed said they would never consider taking part in a clinical research study The 25-34 age group was the least likely to want to participate in research
  • According to the survey, women and men had slightly different motivations for considering participation in a research study.  Women were more likely to take part in clinical research if they thought it could help them, or a member of their family.   Men were more likely to consider participation if it could help someone with the same health condition - even if they didn't know them.

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