Why the Next-Gen participant experience starts with technology
The clinical trial industry is hyper-focused on enhancing the participant experience. We’ve seen buzzwords like “patient convenience” and marketing campaigns around “patient centricity”. In fact, based on a recent survey conducted on industry trends, 96% of sponsors who completed the survey agreed that “providing technology solutions for patient engagement can positively impact recruitment and retention.”
But what does an enhanced participant experience actually look like, and how can it be supported with technology?
Reducing the burden on clinical trial participants
Many individuals are motivated to join clinical trials because they are facing a challenging diagnosis and have limited treatment options. Once interested in enrolling in a study, they must identify disease-specific trials and ones in which they are qualified to enrol. These are just a few of the obstacles that individuals face before the clinical trial process even begins.
Once the trial begins, even more challenges are presented. In many cases, participants diagnosed with rare diseases or cancer are very ill and experience symptoms that prevent them from attending on-site visits due to travel obstacles. They may also have issues with adhering to trial guidelines, like forgetting about or missing medication and attending in-person visits.
One of the biggest challenges clinical trial participants face is the financial burden that comes along with participating in a trial. Less than 5% of eligible patients participate in cancer clinical trials, according to research. Why? Because out-of-pocket costs and travel burdens can present significant recruitment challenges for some of the most desperately sought-after research treatments.
Another study revealed that, prior to deciding to participate in a clinical research study, over half of the respondents indicated it was most important to know about the costs and reimbursements.
Whether the cost of travel or the cost of having to take time off work, it's evident that participants face a tough decision when determining the benefits vs. costs of participating in a clinical study. Once they’ve made a decision, they still have to find a trial that’s right for them – is it a placebo trial, does the trial require on-site visits, and will they be eligible to participate?
As the clinical trial space continues to evolve, it is important to keep participants’ burdens in mind. The industry now has the technology to ensure participants know all the information they need to know about the trial, track their engagement and retention during the trial, and offer them data once the trial is complete. With this technology at our fingertips, we should take full advantage of providing a customised and flexible clinical trial design approach catered to each individual’s needs and wants – thus creating a Next-Gen participant experience.
What does the Next-Gen participant experience look like?
While the industry sees the need to engage and retain participants, there’s still a gap in identifying what participants’ wants and needs are and how to meet them. For the most serious conditions, such as an individual with stage four cancer, a clinical trial is a life-or-death situation.
These individuals simply do not have the time or energy to do research on current trials, how to enrol, whether they qualify, etc. For the participant that is fortunate enough to find a trial for which they qualify, there is still a question of whether they have the ability to be a fully engaged participant.
In such circumstances, we need to be asking ourselves, “How can we make this easier on the participant?” With all the technology available on the market, there is the opportunity to design trials based on an individualistic approach.
This is when we can utilise technology that allows for fewer on-site visits, self-reporting, mobile alerts, and the ability to provide a more customised approach for the participant.
There is also more to the Next-Gen participant experience than providing flexibility in the trial structure. To further engage participants, we must aim to collect and amplify the patient's voice, ensuring them that their feedback is welcomed and that support will be provided.
A new look at technology to enhance the participant experience
The use of technology in clinical trials has been commonplace for decades, but has looked vastly different – for example, using platforms like Constant Contact for news and notes and Survey Monkey to distribute surveys, and at a slower pace.
However, over the past few years, the industry has driven an exponential increase in the adoption of tech focused on supporting participants throughout the entirety of the trial.
The power of technology became clear during the pandemic, as organisations quickly developed tech platforms and mobile apps to address the challenges posed by COVID. However, the disruption of collaborative work and the speed with which these solutions were developed resulted in systems that were not always designed to be truly participant-centred.
Post-pandemic, we now have more experience with technology and knowledge of areas of improvement. With these facts, we can develop solutions that can be easily integrated individually and with other solutions. We also know more about how participants view these tools and whether they are useful.
Technology is something we always have with us, especially mobile technology. It's a companion in our pocket and people are used to, in their day-to-day lives, managing a lot of things on their mobile devices and also the web. We need both and we have both.
But with the Next-Gen participant experience, we can go from simply gathering information from people to providing a companion as they walk through a trial, participate in a trial, and be with them on that journey. It’s important to remember these individuals are giving their time, bodies, and, in most cases, finances to participate in trials, and that needs to be valued.
This also means that we have to be able to meet participants where they’re at. If technology is off-putting to them or will affect their willingness to participate and engage with the trial, we must cater to that as well.
Clinical trials are no longer a one-size-fits-all approach, we must ensure the participant experience is top of mind. Without participants, clinical trials don’t exist, and without clinical trials there is no medical research to find cures and treatments. While the industry is hesitant to undergo change, technology offers us the ability to do things we’ve never done before, and we must take full advantage of that.
