Wednesday 30 May 2018

Public urged to take part in clinical research to find new NHS treatments

A new survey reveals public misconceptions clinical research.

In a recent survey carried out with the public, it was revealed that only 14% of people have ever taken part in a clinical trial, despite 85% saying they want to help the NHS find better treatments.

Based on these data from a survey of 2,000 UK adults[1], the National Institute for Health Research (NIHR) has issued a call for more people to join clinical trials and get involved in research.

Simon Denegri, NIHR National Director for Patients, Carers and the Public, said: Research has played a massive part in transforming the healthcare that patients have access to today from the discovery of penicillin to the production of the contraceptive pill – and it remains one of our best chances to develop the care and treatment we receive in the future”.

Misconceptions of clinical research

The survey revealed a number of public misconceptions;

  • 23% think clinical trials are only for people who are ill
  • 58% think children cannot take part in trials
  • 38% think all trials involve testing a new drug
  • 66% think you have to be invited to participate in a trial
  • 27% think trials only take place in hospitals
  • 40% do not realise that most hospitals in England undertake trials
  • 40% do not know that patients and the public can help to design

Over half (56%) of adults said concerns about getting a treatment that was not safe or had side effects would stop them from volunteering. But separate data indicate that the overwhelming majority of patients who participate in research have a positive experience (87%) and would be happy to take part in another study (83%)[2].

Research in Newcastle leading the way

The survey also revealed a number of regional differences, with many regions having as low as 7% of people participating in trials. In Newcastle however, almost one in four (23%) of people surveyed said they has taken part in a trial.

Public involvement in research is fundamental to the delivery of better treatments in healthcare, yet despite this, a third of survey participants said they had never seen any information on clinical trials. For those who had, one in five said it had been in a GP’s surgery and a third said it had been in a hospital setting. This suggests that better access to information could help to increase participation.

In addition to helping to recruit patients and healthy volunteers onto clinical trials, the NIHR provides many other opportunities for people to become involved in research.

Simon Denegri said: “There are a number of ways people can get involved, from speaking to their doctor or healthcare professional about taking part in a trial, to suggesting a research topic or helping to design a study. The NIHR will continue to forge strong links with hospitals and GP practices across the country to expand these opportunities for patients, carers and the public.”

NIHR research in Newcastle

Newcastle hosts one of 20 NIHR-funded Biomedical Research Centres – partnerships with leading Hospital Trusts and Universities, responsible for conducting translational research to transform scientific breakthroughs into life-saving treatments for patients.

Through the NIHR Newcastle Biomedical Research Centre (BRC), which focusses on improving lives through world-class research in ageing and long-term conditions, the public are encouraged to take part in trials that have led to significant discoveries in our key disease theme areas. Ways in which we engage with patients are through; dedicated disease specific cohorts such as UK-PBC etc, through our outstanding NIHR-funded Clinical Research Facilities, based in Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University, and through public engagement platforms such as Voice which encourage all citizens to partake in research, nationally.

Giving the public a say in research

According to the survey, seven in ten adults also think the public should have a say in decisions around what research receives funding.

The NHS celebrates its 70th birthday this year. Asked what should be the NHS’s top three research priorities for the next 30 years, 68% of survey respondents said cancer, 58% said Alzheimer’s or dementia and 32% said genetic diseases such as cystic fibrosis. Other priorities highlighted were diabetes (24%), bone, muscle and joint problems (17%) and depression (16%). One in ten selected HIV / AIDS and 14% obesity.

Professor Avan Sayer, Director of the NIHR Newcastle BRC commented: “With dementia being one of our key research themes here in Newcastle, we’re very positive that we’re responding to needs in the health service, as well as areas that the public feel are real priorities.

“Here in Newcastle we are also facilitating the process of older participants being involved in trials, with the addition of Miles Witham, Professor of Clinical Trials in Older People. What we have learned from previous research is that we do not have enough data on age groups that we have an increasing need to represent in research, and we’re positive that with commitment in this area we can include the growing number of older people with complex health needs, going forward”.

[1] An online survey was conducted by Atomik Research among 2,003 men and women aged 18-60. The research fieldwork took place between 6th and 9th April 2018. Atomik Research is an independent creative market research agency that employs MRS-certified researchers and abides to MRS code.

[2] Data from the NIHR Patient Research Experience Survey 2017/18, based on the responses of 4,312 people already participating in, or who had recently completed a research study in England.