Global Patient Engagement: Harmony Through Patient Feedback & Convenience
At this year’s SCOPE EU conference in Barcelona, I was encouraged by the harmony I found amongst conversations there. Vendors, CROs and sponsors speaking at the event all had a different outlook or angle in their specific presentations, but they all shared a key common thread: that serving the needs and improving experiences of research participants is the primary focus in the future of clinical research. Whether the topic was data, technology, enrolment, trial planning or technology, the overwhelming theme was that we need to include the patient voice in those activities.
Greenphire’s Commitment to Global Patient Engagement: SCOPE & EUPATI in the Spotlight
In addition to Greenphire participating as a Corporate Sponsor of this year’s event, I was pleased to present during the Enrolment Planning, Participant Engagement and Recruitment track in a session entitled, “Participant Engagement: The Power of Communication, Inclusion and Flexibility.”
When it came time to determine who to partner with to showcase the patient journey in clinical trials, we were certain that EUPATI was the right choice. Greenphire joined EUPATI, or the European Patient’s Academy on Therapeutic Innovation, in 2020 in support of their mission to help patients to understand and contribute to medicine’s research and development through training and patient advocacy.
I was privileged to be joined on stage by EUPATI fellow Sandrine Lavallé. Our joint presentation highlighted the importance of fostering meaningful participant engagement in clinical trials. Sandrine spoke about EUPATI’s vision to improve health outcomes through the contribution of patients and patient representatives as valued stakeholders.
Together, we told a story of how we can unify the participant experience from pre-trial through post-study.
What are patients telling us about their clinical trial participation experience?
It’s critical that we listen to participant voices – and use that feedback to transform the participant journey towards improved health outcomes.
In our session, Sandrine spoke about the difference between simply involving a participant and fostering meaningful participant engagement. If the focus is only on enrolment criteria, then is this in fact participant engagement?
We know that clinical trials have increasingly focused on personalized medicine, causing enrolment criteria to be more specific and participants more difficult to come by. The result? Higher participant burden. Both in-clinic and virtual visits drain patients’ time, their most precious resource. However, if we are to really honour their time by removing the financial and logistical impediments which can cause study drop out, we can increase engagement.
For validation, we turn to data from the latest CISCRP Perceptions & Insights Study which found that participants, including those in Europe, are more willing to participate in an additional clinical trial if they have received some kind of compensation when they participated in their first.
This point was reiterated in several presentations where patient barriers to participation and recruitment diversity were discussed. A Senior Clinical Operations Lead from a top ten pharma sponsor shared a quote from a participant during his presentation, explaining that they often “just can’t afford the travel to participate in a clinical trial.” Those barriers and burdens of travel are further supported by the participant feedback in the CISCRIP survey, in which 48% of European patients stated that travel is the most disruptive part of participating in a clinical trial.
To put into context the burden of travel, a Greenphire study recently completed for the DIA/Tufts Patient Engagement Project showed that, in the United States, the average travel to a research site was double what had previously been reported, for rare disease, can average 135 miles. Greenphire helps patients overcome these barriers by offering technology solutions to provide patient reimbursement and travel services and strives to develop innovations that deliver the best possible patient experience.
Whose voices can best help us shape the next generation patient experience (care givers, advocates, patients, EUPATI)
It was clear from the presentations and discussions that incorporating patient feedback is crucial for future clinical trials to be both more successful and diverse. There was also concern expressed for the other key clinical trial stakeholders such as the sites, their burdens and diversity challenges, and how that impacts the participant.
Inclusion of the patient voice is not a simple tick box exercise. In one presentation, the speaker made an interesting point to encourage thought leadership within the broader patient community, which may include informal support groups, registered patient organisations, individual patients, online communities, Facebook groups or online patient influencers and bloggers. The rich multitude of potential offerings that are available for sponsors to draw from digitally and beyond provides much hope for the future; but again we were reminded that with patient engagement also comes the need for listening and truly incorporating patient feedback into the clinical trial model in a meaningful way.
Throughout the presentations at SCOPE, the importance of patient involvement was discussed and “patient centricity” was the buzz of the event, but the sponsors who are taking real engagement with participants are still in the minority. EUPATI is one such organisation which bridges the gap between researchers and participants. Their dedicated training of advocates creates opportunities to incorporate the patient’s voice end-to-end in the medicines research process. In fact, EUPATI’s Patient Expert Training Programme has successfully trained more than 200 patient experts through an open-access, multi-lingual toolbox that has served more than 3 million users around the world.
A shared goal of both EUPATI and Greenphire is to provide more education to all stakeholders to help work toward improvements for future clinical trials and realise some of the aspirations that were discussed at the conference.
Digital transformation and the next gen participant experience: how might Greenphire’s relationship and insight from EUPATI help us meet this challenge?
In a recent blog, my colleague and Greenphire’s Vice President of Mobile Applications, Clay Williams, discussed what an enhanced participant experience might look like and how it can be supported by technologies. Clay echoes the sentiments expressed at SCOPE EU, that participant experience must be considered during the entire technology and clinical trial development lifecycle.
Reaching out for participant feedback and measuring success once the technology has been designed and deployed is not optimal. Instead, to maximise the potential of new technology, the participant needs to be truly engaged to understand and eliminate their individual challenges and day-to-day burden. Organisations like EUPATI are helping to support such initiatives by educating researchers and participants about the process. The value is not just for the sponsor. With technology, sponsors, researchers, and participants can be more engaged and connected by sharing information together, whether that is sharing updates on the success of the trial with participants or collecting data. This bi-directional communication is vital to developing solutions that support the patient’s entire clinical trial journey.
It is no longer a question of whether digital technologies will have a place in the future of clinical trials. The industry focus has turned to enhancing those technologies to support the best overall patient experience. Whilst a lot was discussed regarding access to data, analytics, and automation, the overwhelming message I heard and that was stated at SCOPE by my peers was surrounding the importance of participant engagement and ensuring the participant voice is truly heard.
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