Patient engagement and involvement is fast becoming a pillar of good practice in all areas of healthcare and life sciences.
In tandem, the rise of social media has been a big part of this movement towards patient-centricity as individuals and patients now have the opportunity to have their say and hold businesses and governments accountable.
Social media has allowed patients to build communities to educate and share information around a certain disease area, show support and also notify others of upcoming clinical trials to potentially participate in – this is especially true for rare disease patients who are very often underrepresented and underserved.
A new partnership between decentralised clinical trial (DCT) service provider THREAD and patient community platform CureClick will see the two companies uniting to transform patient recruitment into DCTs with the help of social media influencers.
Clinical Trials Arena spoke with THREAD CEO John Reites to learn more about this intriguing union and to discover what he sees in the future for patient involvement in clinical research.
Kezia Parkins: Why are patient advocates so important for driving trial recruitment?
John Reites: Patient engagement, direct to patient, patient involvement – all these terms have been buzzwords that the industry has held on to, but in the last 10 years they’ve started to become standards.
Getting patient insights and advocacy groups and influencers involved can be hard to do. One of the reasons that we partnered with CureClick is to really help do this, as we are getting more customers that are advocacy groups that are now doing decentralised studies and registries. We now have advocacy patient groups that are doing patient insights, which means they’re actually reviewing our technology and the protocols we’re supporting. What we want to do is help to standardise and make it easier for them to unite through the communities they’re already using to connect potential participants directly into a decentralised study.
For us, there’s great value and patient involvement has now become an instrumental and foundational part of what we do, regardless of the study design, to make sure that we’re connecting with patients and patient groups and getting their input and feedback on the protocol and the design throughout the study. We’re involving them to help us support things like recruitment and retention, which have always been challenges in the industry. It’s this movement towards patient-centricity that has led us to solutions like what we’re talking about today.
KP: Why do you think social media influencers will aid in driving recruitment?
JR: A lot of influencers we’re talking about through CureClick are individuals who either have the condition that we’re recruiting for or are caregivers, partners or advocacy group members for people with the conditions. These are not influencers like you see on TikTok or Instagram, these are influencers who are providing content, information, education around a particular therapeutic area, or a condition and how to live with it and how to partner with people and get help.
These are the types of influencer communities that CureClick supports to improve transparency in clinical trials and aid in education around the study and the type of people they are trying to enrol who fit the criteria.
Often these are people that are highly engaged already as they’re not just looking for help and support but are actually looking to do clinical trials as a way to contribute to the new potential medications and devices that will come out. Many look to contribute to clinical trials as a care option because you are really looked after. This can be especially true if you’re a rare disease patient. Sometimes a clinical trial in some of these therapeutic areas are actually a fantastic way to help with getting medication from an R&D perspective, but also to get carried throughout that process. Influencers are often the ones who make others aware of those advantages.
KP: What are the benefits of tapping into social media for trial recruitment, and do you think pharma in general has been slow to engage with these channels?
JR: I think one of the keys here is rare disease recruitment. These groups are typically highly engaged in influencer communities and these tend to be the most challenging patients or participants to enrol in clinical trials.
This is because there may not be a lot of information about the disease area and, in some cases, not a single advocacy group is built yet for that patient population. So one of the big advantages is that these communities tend to be a place where these rare and orphan disease areas tend to congregate.
Pharma has massively boosted efforts to engage and work with advocacy groups, and we work with a number of larger pharma companies and have seen a tremendous change in the last several years with them partnering and bringing in patient advocates and groups into their protocol designs, and I think that’s been fabulous.
KP: On the other side, what are the risks of diving into social media as an enrolment tool for a sector as heavily-regulated as clinical trials and drug development?
JR: The main risk with social media is always privacy and GDPR and remembering that you should not be doing your clinical research on a social media platform.
We do this work in more than 40 countries, so we have made that process very safe in terms of GDPR and its equivalents around the world.
Rather than using social media influencers to conduct research, they should be used as a connection to the individuals that want to participate in decentralised trials through a clinically validated platform like THREAD and to bridge them to educational resources.
KP: What attracted you to choose CureClick as a partner?
JR: We’ve actually worked with CureClick for a number of years on different projects – there is a lot of synergy between THREAD’s mission and theirs. One of the mission statements that we align on is trying to make our studies more inclusive as well as more efficient and comprehensive.
Inclusion means a lot of things, but what matters most to us is ensuring that the decentralised trials we support can enrol patients from a larger geographic footprint around clinical research sites. We want people that live 300 miles from the site to have an opportunity to participate in clinical research from all socio-economic backgrounds and all walks of life. Trials need to include people that look more like the population we have globally. CureClick really provided a solution to do that, because being in the social media arena means that geographic boundaries don’t apply to them.
They can engage individuals who want to participate in clinical trials on social networks from all over the US and around the world.
It’s a much simpler and more transparent solution for potential clinical trial participants to come through. We can make it easier for them to get in, but also we can put that bridge in the middle to help the influencers direct participants to something that is IRB [institutional review board] and EC-approved and educate them on the study.
I really feel like there was a one plus one equals five, with CureClick. A number of our customers have been asking us to support their recruitment solutions, so this became a really simple fit that we thought would bring a lot of value to the participants in the communities, but also to our pharma and CRO customers. So, we are really excited to make that partnership formal and make it known.
KP: How do you think this partnership will improve patient recruitment in emergency situations such as the current Covid-19 pandemic?
JR: We did a separate report which was externally reviewed to compare THREAD’s decentralized trials to 1350 other traditionally designed studies in the industry to review how our studies performed during Covid-19.
From the report, you can see that our studies were far more resilient for recruitment and retention versus the average, by an alarming amount. What that says is a pretty practical thing; in a decentralised trial approach if you have the technology and the access to potential participants and can collect data virtually using things like electronic consent, telehealth or even home health – that combination of things enables you to recruit people and get them to start contributing data remotely.
If we do ever have another pandemic, the resilience to recruiting digitally into a decentralised trial model is actually already built into what we do as a company.
KP: What do you see in the future of patient involvement when it comes to DCTs?
JR: We’ve always tried to make the future today and to help customers to be able to do some things now, with an ultimate goal that they can scale, adapt or roll out something else later.
In the DCT landscape, we’re really trying to help participants have a less frictioned and convenient experience getting into clinical trials, learning about them, being pre-screened, getting enrolled and getting randomised.
That ability to digitise the majority of the approval process is where the future is and that’s what we’re really trying to do today and establish it as the new standard. The end goal here is we want research to be filled more quickly. We want studies to be able to quickly recruit and retain patients to get the data they need. And we want participants to have a fantastic experience as they do it.