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Dr Aubretia McColl and Professor Sarah Pendlebury explain how they’ve tackled the challenge of recruiting older, frail patients with multiple conditions to trials within acute care in hospitals. They are running a trial exploring how digital biomarkers can help spot patients at high risk of dementia.
One of the main challenges for the UK’s health and care system is our ageing population. Over half of people admitted to hospital are aged 65 or over, and most of them will have more than one condition.
But despite the high numbers of older people who need hospital care, we know this group isn’t well represented in health and care research. One of the main issues is that it’s hard to get older patients involved in health research when they’re in hospital.
Hospitals are often very stressful environments for patients and their families, so it’s not always easy to find the time or the right moment to talk about taking part in research, especially when urgent treatment might be needed.
Researchers need to be persistent and determined and prepared to return sometimes several times, whilst also being mindful of patients and families’ needs. Often researchers will need to speak to a family member or friend, as the participant may be unable to make the decision themselves about participating in research owing to confusion or dementia. Healthcare staff are also often under more pressure in the acute hospital environment, which may be chaotic and under-staffed.
But if we’re going to improve care for these patients, it’s vital that more of them are able to take part in research to understand what works best for various conditions.
Can digital biomarkers help spot patients who are at risk of dementia?
Our research aims to develop a better way to spot patients at high risk of dementia, using information that’s already collected in hospital electronic patient records and brain scans.
We hope this could help to develop better ways to care for these patients, as well as spotting people who would be suitable to take part in clinical trials to prevent dementia. And so far we’ve had some real success in getting patients involved in our research.
How we’ve been successful with our trial
We’ve found that it’s been crucial for our research team to have close links with the clinicians in the hospitals where our trial is running. This has helped us to find and recruit suitable patients – but it’s something that needs to be supported with additional time and funding.
Our dedicated research staff work closely with healthcare staff to recruit and assess patients as part of our trial. Crucially, this is made easier by our study Chief Investigator and Principal Investigator who are themselves both busy clinicians looking after older hospital patients. They understand the pressures on patients and healthcare staff in this setting and help support recruitment.
In addition, we’ve followed a unique way of working where our research team has shadowed doctors during their rota when they are admitting new patients, which helps them make a list of patients who could potentially take part in our research. This means we’ve been able to approach consecutive potential participants as soon as possible after they’ve been admitted to hospital. We’ve also taken time to promote our trial in relevant hospitals – making sure clinicians knew about it and to raise the profile of the study more generally.
We also offer multiple methods of follow-up so participants can be seen at home or assessed over the telephone if they find attending the clinic difficult. We also follow-up our patients using medical records so that we have information even on those who feel unable to continue with the study.
As a result, we’ve now recruited over 330 patients – over half of the total number we need for our research and slightly ahead of schedule. We have also started follow-ups, with around 100 seen or with scheduled appointments to date, including via home visits.
Our tips for recruiting patients while they’re in hospital
Develop the research capacity within your department before you even think to start the study. Ensure the department is enthused about research that is relevant to older and often frail adults, explain the challenges to them and demonstrate how you (and your team) are working to overturn them.
At the Royal Berkshire Hospital we have done numerous ‘outreach’ sessions to colleagues, including presentations about research and research opportunities, webinars, and intranet posts. This has helped to increase awareness of research ensure the clinical staff are receptive to our presence and can advocate to potential participants on our behalf.
This has led to members of the department volunteering their “Supporting Professional Activities” time to help support the study – which has been a huge help. However, there still remains a constant struggle between the multi-disciplinary team’s clinical pressures and their interest in assisting in research.
Develop a close working relationship with Research and Innovation/Development Teams. Getting to know these teams will mean you’ve got good support for your research. These staff know how to get things done, and can help when you hit an inevitable snag.
Demonstrate constant enthusiasm for the trial and for staff who volunteer to assist with the trial! Popping into an office to say thank you (for example with a box of chocolates) when someone has helped with recruitment or overcome a study snag, demonstrates your appreciation and reminds them of your enthusiasm.
At a time when NHS morale for ‘shop-floor staff’ is generally low, being involved in a research trial – and being recognised for being involved in the trial – can really spark joy in an individual. And this also helps with staff recruitment/ retention in the long-run.
Consider including fewer sites for the trial but with more focus on recruiting successfully at those sites. This is much more cost effective than opening multiple sites. This process is lengthy and resource intensive, and can be less effective when some sites then recruit very few patients and/or those from unrepresentative groups. Having sites where clinicians on the ground working in the same clinical service are actively engaged in the study and helping to support recruitment makes a huge impact.
Taking research to where it’s needed most
It’s well-recognised across the research community that research doesn’t always happen where the burden of disease is highest. NIHR’s underserved communities programme aims to ensure research studies are delivered where the need is greatest, including among people with cognitive impairment, lack of capacity, functional impairment, and vision/hearing deficits – many of which affect older people in hospital.
Our experience shows that it is feasible to recruit older people who may be frail and have multiple health conditions from the acute hospital setting. Contrary to frequent perception, it is not therefore the case that older people don’t want to be involved in research or don’t want to be bothered when they are unwell. We found that when they are directly approached they are keen to participate and should be given equal opportunity to access relevant and appropriate clinical research.
We also believe there is a need for more ‘disease agnostic’ research – studies that don’t focus on people with a specific condition, but instead on more wide-ranging ways to improve care and treatment in hospitals or the community. To tackle the challenges of an ageing population, we need more focus on some of the harder problems in healthcare – outlined in NIHR’s areas of strategic focus. Research to overcome these challenges is crucial if we are to improve the health of people across the UK and beyond.
Dr Aubretia McColl, Consultant Physician, University Department of Elderly Care, Royal Berkshire NHS Foundation Trust and Visiting Academic Fellow, Wolfson Centre for Prevention of Stroke and Dementia, Nuffield Department of Clinical Neurosciences, University of Oxford
