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How Technology can Galvanise the Unrepresented Patient Population

By October 29, 2021February 16th, 2023No Comments

Participation in clinical studies is more accessible than it has ever been. This is, in large part, due to the uptake of decentralised clinical trial models, made possible by technological advancements, and accelerated by the COVID-19 pandemic. 

Decentralised clinical trials leverage available technology – such as smartphones, wearables, and telehealth – to reduce the burden of time, travel, and expenditure for patients, helping us recruit a more representative participant population.

When clinical trials are inclusive of a wide variety of races, genders, ages, incomes, abilities and locations, findings are more representative of the true patient population and lead to better clinical outcomes. Diverse recruitment benefits not just individual patients, but scientific progress.

Taking a virtual or hybrid approach to clinical trials benefits everyone. In lowering or eliminating the most common barriers to enrolment, as well as the reasons for patients dropping out, diversity initiatives are far more likely to succeed while significantly improving patient retention and engagement.

What are the common reasons patients don’t take part in clinical trials?

When we talk about galvanising an underrepresented population in clinical research, we first need to understand the reasons why these communities are less likely, and less able to participate in clinical research. 

  • Travel and time 70% of patients live more than two hours from a research site, and many live in an entirely different country to where the study is taking place. It can be challenging to take time off work, or away from family. This is especially true for people who work unpredictable shifts, have limited holidays, or who have dependents. 
  • Socio-economic issues – there is a financial burden to participating in clinical research. Many people don’t have the luxury of being able to pay upfront expenses and await reimbursement, or take unpaid time off work.
  • Health issues – if participants have rare diseases, complex medical needs, or any other condition that impacts their mental and physical health, then travelling to and from research sites, and disruption to their daily routines, can be untenable.
  • Awareness and education – many people are not educated about clinical research, and therefore may be unaware of their eligibility to participate in research, or understand the importance of participating. This goes as far as general practitioners, who often don’t understand the research options available to their patients. 
  • Trust – many minority communities have a deep mistrust of the medical profession due to historic poor treatment. Those without access to healthcare and health education are more likely to feel disenfranchised, and therefore unmotivated to take part in clinical studies.

Leveraging available and emerging technology to address each of these barriers gives us the opportunity to reach, educate, inform and enrol a far more representative – and more engaged – patient pool. 

Reducing and replacing travel

Communities in rural locations, or those living in communities with typically low incomes, are less likely to enrol in clinical trials because they don’t have the time or the means to travel to a research site. They’re also those least likely to have access to a high standard of healthcare. 

If we are to make clinical research fully inclusive and accessible, we must engage populations that are representative of these groups, many of whom are more heavily impacted by illness and disease. 

For sites and sponsors that regularly need to reach patients living hours away from a traditional study site, using technology to facilitate virtual trial elements is vital for serving these communities.

As well as replacing site visits with home health visits for patients, allowing them to gather data themselves through wearable technology, and have check-ins via video conference instead of face to face, technology can also facilitate a collaborative approach to research.

Sites across multiple locations – both large and small – can work together to form networks of labs or imaging centers, from which data can be gathered and sent digitally between sites, reviewed remotely by health care practitioners, and results can be delivered electronically too.

These types of collaborative networks mean the burden of patient care does not fall to one central site or team. Not only are patients able to eliminate or reduce travel time by visiting their local site, they also receive higher standards of care and engagement, making them less likely to drop out and giving sponsors a better chance of gathering the data they need for the trial to be a success. 

Accessing excluded communities

Technology makes it easier to reach the hardest-to-reach patients. If we embrace the decentralisation of clinical research that technology makes possible, we have more chance of reaching sites which are specific to minority communities. 

A lot of the time, studies fail to recruit diverse populations because sponsors and CROs don’t engage within diverse communities. Historically, local community clinics and hospitals have been excluded from clinical research because they’ve been deemed too small, or they may not have the support and infrastructure in place to conduct clinical trials.

However, a decentralised or networked approach, underpinned by digital communication and data sharing, means we can utilise more sites like this. These sites are trusted by communities, often with generations of families visiting the same community hospitals and health centres. This works to overcome the trust barrier, as well as reducing the burden of travel. 

Facilitating a friendly, local approach to a clinical trial – even if the study is being conducted from a long distance – can make participants much more comfortable, bringing a level of familiarity and trust that would not have been there otherwise.

Protecting patient health

When patients have rare diseases, or complex healthcare needs, technology is vital in facilitating their participation in clinical trials. Studies have found that in 50% of clinical trials, participants find it difficult to stay enrolled due to poor health.

Whether or not they are suffering from a chronic or pre-existing condition, if patients aren’t feeling well then it may be at best cumbersome and at worst damaging for them to leave their homes and attend a site visit. If you have a high frequency of visits, with patients required to attend a site more than once a month, it can become very difficult for a patient in poor health to make that commitment.

The event of the COVID-19 pandemic created a high level of reluctance, and sometimes a complete inability, to travel for any patient who was at risk due to being immunocompromised.

Since 2020, technology has been vital in keeping vital research going. Site visits have been replaced by home health visits, more data gathering has been done by patients directly through digital communication or wearable technology, and more studies are being designed with decentralised protocols, which reduce or eliminate the need for travel altogether. 

Increasing awareness of clinical research

The COVID-19 vaccine trials have been some of the biggest clinical trials in the world, and the high numbers of patients recruited has been at least in part due to the publicity that the research has received in the global media.

This has demonstrated the power of the media – both traditional press and social media platforms – in educating people about the process of clinical research and its importance. As a result of public recruitment drives, Moderna’s COVID vaccine trials were some of the most diverse in the world. Pfizer has also made a public commitment to increasing underrepresented populations within clinical trials, including an outreach and awareness drive. 

There’s no denying social media can potentially play a big role in raising awareness of the importance of clinical research and participation in trials, with multiple high-profile celebrities and political influencers promoting uptake of the COVID vaccine. This sort of campaign and engagement could be applied to any number of vital future trials. 

Overcoming the challenges of digital education and integration

While the potential of technology to engage underrepresented patient populations and democratise clinical trial participation are undeniable, we must work hard to ensure patients have the level of digital knowledge and confidence required. Otherwise, increased use of technology can serve to alienate rather than engage.

Not everyone – particularly more elderly and low-income populations – will have knowledge of and access to technology within their day to day lives. In order for technology to make clinical trial participation accessible, patients need to be comfortable not only using smartphones and wearables, but communicating with healthcare professionals via phone or video, which many of us take for granted.

To some patients, technology can feel frightening and impersonal. We must ensure technology does not create exclusivity when it has the power and potential to be so inclusive.

Therefore, it’s important to ask ourselves questions such as:

  • Do I need to explain how this technology is going to work to my patients?
  • Is the technology intuitive?
  • Is the technology accessible for disabled patients? If not, how can I make it so?
  • Do we need to provide training or tutorials?
  • Does this technology integrate with this patient’s existing devices?
  • Are they going to need Wi-Fi capability to make the technology work, and do they have access to the internet at home?

We cannot assume that all patients are going to have access to devices or Wi-Fi, or that they will be familiar with the technology they need to operate to participate in the trial.

We must ensure we have contingencies in place to support patients from every walk of life for clinical research and the healthcare industry at large to become truly diverse, inclusive and accessible. It all starts with putting the patients first. 

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