• Ash Rishi

SCOPE Europe 2019: Patient engagement and clinical trials

I have heard some great things about SCOPE, the Summit for Clinical Trial Operations Executives. Until recently, this conference had only been held in the United States, but for the second year running, a European event has also been held. My interest was piqued, so I decided to join as a delegate in Barcelona with the aim to learn, learn and learn.

Let’s get the negatives out of the way, shall we? There were a number of tracks that I could have attended, but due to my passions, I opted for the ‘Patient-Centric Enrollment Planning and Engagement’ track. Nearly every talk attempted to define patient centricity, which essentially boiled down to one simple statement: “patient centricity is centred around the patient.”

Good grief guys.

I fear that there is still lip service being paid here. Engaging with patients seems to be a tick-box exercise and I am deeply concerned that our industry is missing the point. For instance, an innovation director presented a very interesting talk on ‘voice in clinical trials.’ This has been fascinating to me for a long time as a concept to improve both engagement and adherence. It can also have societal impact by helping to combat loneliness, which is a major cause of depression in society (but this is a topic for another time). What troubled me was the development of voice-enabled app that would engage with a patient while they were on the clinical trial: development was based on feedback from just 8 patients. Yes, 8.

Another presenter from a top-10 pharma company talked about their very recent patient engagement activities in partnership with National Institute for Health Research (NIHR.) One example they shared was: the medic in charge of a study wanted to gain a deeper understanding of what young people with a skin condition feel and experience on a daily basis, while also wanting the young people to review a pictorial representation of the informed consent process. A focus group comprising 9 young people in one hospital (in North West England, United Kingdom) was used as the basis for the recruitment strategy. Yes, 9.

Innovative voice apps – 8 patients

Informed consent review for young people – 9 patients

I am worried that we are falsely supporting to the concept of patient engagement, simply to improve study success in the short term. With such a limited number of people providing input, how are we accounting for cultural diversity? Different personal preferences? The kind of words that resonate with the person? The tone that should be used? Access to smartphones/smart speakers? Access to clinical trials? The ability to impact their lives to attend unreasonable appointments? So much more needs to be done in this industry to make sure we understand the person, rather than the patient. We need to focus on what matters to the person. We need to be discuss their needs and challenges on a larger level. If we don’t, I fear that in 10-years’ time, we’ll still be saying the informed consent process is a challenge, we can’t get enough patients on the study, the list goes on…

I do apologise for the rant. There were four really good, key take-aways that I would like to actively investigate and learn more about.

Voice-enabled technology

Bert Hartog from Janssen gave a really interesting presentation about voice-enabled technology (VET) and how it can improve real-world data for clinical trials. With regulatory bodies seeking up to 15 years’ worth of follow-up data for CAR-T trials, the question asked was – how do we keep people in studies for that duration of time?

Bert reminded us that voice is the most human way to communicate; it can tell you things you cannot see. This is so true, and it made me think about how we communicate with people on studies. We can be quite passive: here is a flyer, visit a website... However, with VET, we can be more active, more supportive and more engaging. Something for us to consider.

Two other mind-boggling stats from the presentation: over half of the U.S. population has a smart phone or a smart speaker, and smart speakers are the fastest adopted technology ever.

Do we ignore the hype? I think Bert raised a fantastic point here. Our industry is blighted by short-termism, but it is important to have a long-term view of how to incorporate VET into clinical trials and patient engagement.

Diversity in clinical trials

The talk by Narinder Chopra from Biogen was my biggest surprise at SCOPE 2019. I have been doing what I can to champion the cause of improving diversity in clinical trial participation but Narinder and his team are doing some stellar work out in the US trying to engage the Black community with local events, the team are at early stages in a 5-year plan, but I look forward to seeing the progress Biogen are making. Well done!


Fascinating work is being done by Begonya Nafria, a Patient Engagement in Research Coordinator, in Barcelona. With EC funding Begonya and her colleagues have launched a virtual platform called Share4Rare, to raise awareness and education for rare diseases, and share news and research opportunities. Begonya shared a one-year update of a three-year project, and it’s not difficult to be super impressed. The Share4Rare project includes the creation of a large social network that, unlike conventional forums, incorporates mathematical algorithms such as those used by dating platforms. These algorithms will help to connect users based on the information they provide in their profile and will make possible for people to direct their queries to those most likely to be able to provide an answer. Share4Rare will also help patients and carers connect who are affected by the same disease or symptoms, so they can support each other. This is extremely important in the rare disease community where conditions have a very low prevalence and a high heterogeneity of symptoms.

Please do check it out when you get a moment.

Partnering sponsors with patient advocacy groups

Efforts to overcome issues surrounding patient engagement seem to be increasing, especially with institutions such as NIHR doing work in the UK to support sponsors in engaging with patient advocacy groups, which of course is great. More work needs to be done in other countries, but we are heading in the right direction.

My concerns lay around red tape with contracts. Pharma/MedTech/BioTech/Life Science companies all have legal teams, but smaller patient advocacy groups are not set up for big contractual discussions and they need to maintain their independence at all costs. NIHR have been working on a letter template that can be used to speed up the process, as opportunities to incorporate the patient voice are being lost due to contractual stuff. So, I personally look forward to learning more about the patient engagement services that NIHR will be launching in November.

I hope this has been an interesting read!

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