The great untold story of research

Source: NHE May/June 2018

Simon Denegri, national director for patients, carers and the public at the National Institute for Health Research (NIHR), advocates closer public involvement in NHS research and innovation.

The British people have high hopes for their healthcare. They believe that the NHS will throw ‘everything’ at it if they or a loved one is unwell. That ‘everything’ includes the very latest that research can bring to their hospital bedside, GP surgery or their home.

It’s a belief fuelled not only by their own experiences but by newspaper headlines and fly-on-the-wall TV documentaries showing health professionals battling against the odds with the help of amazing technological advances – all to turn those odds in favour of patients and families.

Time and time again, surveys show that the vast majority of the British public believe health research is important and a vital part of what the NHS does. When the Association of the British Pharmaceutical Industry (ABPI) recently asked people to identify the main reason for the UK’s lead in medicine and medical technology, the most popular answer was the NHS, followed by the UK’s scientific heritage.

They are also justifiably proud of the NHS’s track record. It is, after all, world-class. When asked in the same ABPI survey which British innovation in the last 70 years has had the biggest impact on health and medicine, 21% of people chose the first liver, heart and lung transplant, closely followed by the structure of DNA and the development of the CT scan.

Letting people in

To tie in with the NHS’s 70th birthday, the NIHR is showcasing how research has improved health and care over the past 70 years, as well as how our research is helping to shape the future. This includes spotlighting 70 discoveries – starting with penicillin – that have transformed outcomes for patients and the way the NHS works, and highlighting seven research legends whose findings have transformed care in our health service.

What is less recognised is the role that has increasingly been played by patients, carers and the public in this innovation story. Over three million patients, carers and healthy volunteers alone have taken part in clinical trials since NIHR was established in 2006. Many thousands have helped us identify research priorities and design and deliver the best research to meet people’s health and care needs. Up and down the country, citizens are actively co-designing the future of health and care alongside NIHR research, health professionals and NHS staff.

People like mother and daughter, Sophie and Sammy Ainsworth. Sophie was diagnosed with the life-changing condition lupus as a young girl and is now studying for her university degree. As well as taking part in clinical trials, Sophie is a member of our GenerationR movement of young people helping researchers design studies. Meanwhile, Sammy’s experience has led her to become a patient research ambassador at her local Preston hospital – being the face of research with other hospital users, raising awareness, helping to recruit patients to trials, and lending her insight and experiences to researchers.

I Am Research

NIHR has been at the forefront of the movement to involve the public in research over the last decade. It is the recognised world leader for the way in which it has made public involvement ‘business essential’ to the delivery of clinical trials. Now, charities and industry are catching up fast, and public involvement is becoming an important part of local innovation partnerships led by Academic Health Science Networks as part of the Life Sciences Strategy.

But at the end of the day, it’s the contribution of people like Sophie and Sammy from which we should draw inspiration. The NIHR aims to highlight this in its annual ‘I Am Research' campaign, timed to coincide with International Clinical Trials Day which took place on 20 May.

The campaign is both a cause for celebration and a call to action. According to a new NIHR survey of 2,000 members of the general public, just over 10% of people have taken part in a clinical trial; it is important that more people not only join us in this enterprise, but also understand that routine activities such as sharing patient data are essential to research into future treatments.

Dispelling myths – and becoming proactive

The challenge confronting NIHR, its NHS partners, industry and research charities is not that people are not willing – over 80% of respondents to the survey said they wanted to help the NHS develop better treatments – but that common misconceptions about research persist, and we are not making research part of the routine care and treatment that most people can expect when using their health service.

Those misconceptions include the fact that they have to be invited to take part rather than ask about opportunities; that research is not happening near them even though nearly all hospitals are research-active; and that whole groups in society, such as children, cannot take part in a trial.

Approximately 80% of people have never been invited to take part in a trial and many have not seen information about research in their local hospital or GP surgery. In fact, people are more likely to have seen information about clinical trials on the web than they are in their local NHS.

There is now growing evidence of the link between research-active hospitals and quality of care. This evidence suggests that the public’s gut instincts about what research means for the NHS and their own care has always been spot on. Perhaps, as in many other things, the public have been ahead of us all the time.

What seems clear is that they can have a bigger role to play in the innovation story ahead by taking part in studies and developing research that matters to them and the nation.

But first, we need to let them.


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