The Breaking Barriers study aims to understand the challenges faced by patients when taking part in clinical research – and solve them so more people are able part in potentially life-saving clinical trials.

Cancer research underway (Image: The Clatterbridge Cancer Centre NHS Foundation Trust)

The study is led by Principal Investigator Emma Whitby, head of research delivery and research officer Dan Winsor.

So far, 116 patients have agreed to participate out of a target of 300 planned places.

Emma Whitby said: “Research should be for everyone. By listening to our patients and understanding their experiences, we can build a more inclusive and effective research environment and help more people participate.

“The study aims to amplify patient voices and remove obstacles that prevent equitable access to research opportunities.

Cancer research underway (Image: Clatterbridge Cancer Centre)

“Achieving this would not only be good for our patients and their families but improve research as there would be a more diverse pool of volunteers taking part in our studies.”

Breaking Barriers uses a custom-designed questionnaire to explore what helps or hinders participation in healthcare research.

Previous research found that patients from the most deprived areas are least likely to take part in clinical trials, despite often facing the highest level of ill-health.

Recent data from the National Institute for Health and Care Research (NIHR) has revealed that UK areas with the highest burden of disease – such as Merseyside – also have the lowest number of patients taking part in research.

The study is led by Principal Investigator Emma Whitby continued: “It is widely accepted that the majority of trial participants are currently white British and affluent, which is not representative of the diverse range of people affected by the conditions for which medications and procedures are usually being trialled.”

The ‘Breaking Barriers’ study is led by Principal Investigator Emma Whitby, (Image: Clatterbridge Cancer Centre)

Findings from previous surveys of patients on this issue have noted the following key themes:

  • Accessibility and Convenience: Transport and flexible scheduling are critical
  • Trust and Ethics: Confidence in confidentiality and healthcare professionals’ motivations matters
  • Perceived Benefits: Belief in the value of research and trust in the care team encourage participation
  • Practical Concerns: Travel, safety, and complexity of information can deter involvement
  • Representation: Under-representation of key groups, such as ethnic minorities and socioeconomically disadvantaged individuals, limits the comprehensiveness of research findings.

Emma Whitby added: “CCC is working to ensure that research is accessible to all – helping to build a more equitable and effective healthcare system for the future.

“We are encouraging all our patients to take part in this research and will be very grateful if they can fill in our survey.”