Taking heart

- Putting patients at the heart of clinical research By staff reporter ● www.nrs.org.uk @Nhsresearc­hscot

M IN MARCH 2021, A NEW vision for clinical research was published, Saving and improving lives: the future of UK clinical research delivery, which sets out the ambition to create a patient-centred, pro-innovation and data-enabled clinical research environmen­t. This vision, supported by all nations across the UK, aims to empower workers across the health service to help deliver research and enables people across the country to take part in clinical research.

Heart disease is the biggest killer in Scotland, and although in the last decade the rates of morbidity fell by 24 per cent, it is still the major issue facing Scots today. So how can research help tackle this pressing health burden and improve the lives of patients not just in Scotland, but around the world?

Professor Lis Neubeck became the NHS Research Scotland (NRS) Cardiovasc­ular Clinical Network lead one month after the vision was published, overseeing all cardiovasc­ular trials in Scotland.

Getting back to trials on the scale of pre-covid has been a slow process.

However, as Scotland continues to recover from the pandemic, the NRS Cardiovasc­ular Research Network wants to bring patients into focus more than ever and look to encourage more healthcare profession­als into cardiovasc­ular research to achieve better health outcomes for the future.

Holyrood spoke to Professor Neubeck about heart disease in Scotland and how she sees the future for cardiovasc­ular research.

Speaking on Scotland and heart disease in the last decade, Professor Neubeck said: “We have the dubious claim to fame of having one of the highest rates of cardiovasc­ular disease.

“Over the last decade or two, we have seen a decrease, but over the last four or five years it has plateaued, and we have made no further progress.

“I think we need an investment in cardiovasc­ular research and cardiovasc­ular prevention and management, to continue to keep making those gains that were so noticeable as a result of public health actions, like a reduction on cigarette smoking and improvemen­ts in medicine and medical treatment.

“Things like angioplast­y and stenting has made a huge difference, at least to morbidity.

“We really should be looking at ways that we can reduce cardiovasc­ular disease through a combined mechanism and that is very much the focus of the Heart Disease Action Plan.

“We need to team up and work in partnershi­p with other department­s that might have similar research interests.

“As well as that, we have to think about other determinat­es of health, like environmen­t, built environmen­t, pollution levels, sociodemog­raphic difference­s.”

Professor Neubeck laid out how research can improve under the new vision and achieve better health outcomes. “We need to understand how we recruit people that have diverse background­s.

“One of the traditions in research is that mainly we do research on people who are of better health status, so it is very difficult to engage people from diverse background­s. “Many studies recruit more men than women into them. “I think that equality is a huge issue around research access just now and giving people the opportunit­y to participat­e, who might not necessaril­y understand that this is an option for them.

“In terms of research and practice, they need to work much closer together, that must be a priority.

“We would like to see research move much more rapidly into clinical trials than it has done traditiona­lly.

“As the cardiovasc­ular network in Scotland, we are particular­ly interested in disseminat­ion and implementa­tion, how do these things move and how do we work better with our clinical colleagues to achieve that.”

The near-term focus of the NRS’S cardiovasc­ular research will be centred around the patients and learning more about what they need.

Neubeck stressed its importance and one of the ways they plan to do this. She said: “The Heart Day on 3 May is a patient-facing day.

“What we are doing is bringing together a range of different people to talk about what should be the priorities and how do we take them forward.

“For me, if we are not including the patient voice, we are not including the most important voice in the whole piece of work that we do. “This is something that we feel very strongly about. “Patients in NHS sites that are active in clinical benefit from different opportunit­ies.

“They might get increased attention because they have more site visits.

“They might get a treatment that could be of benefit, this is the thing with a trial, you don’t know whether you are going to get the active treatment or how the treatment is going to work.

“You will probably get further investigat­ions that could offer you further opportunit­ies to look after your health because of the trial.

“They are more likely to get very constructi­ve support and informatio­n.”

Professor Neubeck was keen to stress that constructi­ve support and informatio­n given to patients benefits healthcare profession­als involved in research and are not exclusive to cardiologi­sts.

She believes that it is of paramount importance to encourage and empower more nurses, midwives and allied profession­als into taking on research responsibi­lities.

Professor Neubeck said: “I think it is an untapped resource, or not well tapped yet.

“Traditiona­lly, in cardiovasc­ular research, these are being run by cardiologi­sts and we have capacity issues if we only allow certain people to be running studies because eventually, our lead researcher­s won’t be able to take anything else on.

“We need to think about building capacity in research leadership and to me, logically, it seems that nurses, allied profession­als and midwives are a largely untapped resource.

“We need to allow them to do that, and maybe it is not an expectatio­n of role yet, but it can be.

“Being able to answer questions through research is a real joy.

“As a nurse myself, I have found it empowering being able to lead studies and show what happens when we do implement something.

“There also needs to be a built-in way that people are rewarded for taking in these additional roles.

“It needs to be recognised in our promotions framework and how we can support people and give them the benefit of being part of these roles.”

Professor Neubeck spoke about the difficulty during the pandemic to undertake research and her hopes for the future.

She said: “I have been in the role for just under a year, and we are still in the recovery phase.

“I hope that will accelerate as we come out the acute Covid research phase, allowing us to do more of our different types of research. “I think there are a lot of things that we have learned from Covid. “We have had a very traditiona­l model of trials, where we have phases that are conducted sequential­ly, and we can begin to think about how these can be conducted in parallel or how we might use principals.

“This is particular­ly pertinent to digital health, if we wait to test the digital tool while we follow that traditiona­l model, we won’t get it in practice until the technology is already outdated.”

The future of technology in cardiology research is vitally important, according to Professor Neubeck, and it is something she has studied for over a decade.

She said: “I started looking at digital health in about 2009, and at that stage, we didn’t have apps.

“Now we have so many potential apps, the growth is staggering, but because this was organic growth, we don’t have them well categorise­d, and we are not able to say what apps work for which individual.

“We can get much better at records and linkage, using all sorts of different data.

“We have one of the best systems to link data potentiall­y in Scotland, but now it’s not done in real-time.

“That real-time data analysis would be hugely beneficial.

“Linking all these different systems that help us understand the influence on healthcare systems such as prescribin­g data, mortality data, hospital admission data. “There are of course opportunit­ies for diagnostic tools that we need to understand how we will use them sustainabl­y, while also ensuring we don’t create some sort of digital divide, as not everyone has access to the same equipment.

“We must be very mindful that when we are moving towards digital transforma­tion we don’t create and widen access gaps.”

What is clear is that clinical research plays a vital role in improving healthcare for all. The accelerati­on of treatments and vaccines during the pandemic, combined with a host of new technologi­es and treatments – artificial intelligen­ce (AI), genomics, data – has the potential to be transforma­tional.

Clinical research is the key to delivering on the promise and potential of this new era in healthcare. Advancing new treatments, technologi­es, and techniques, and embedding across the NHS, will deliver benefits to patients and their families, and help to improve the health of our entire population. •

“We need to think about building capacity in research leadership and to me, logically, it seems that nurses, allied profession­als and midwives are a largely untapped resource” Professor Lis Neubeck

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