Conferences can be indicative of the mood in an industry. They set the stage for what is to come, and also the issues and challenges being faced at that very moment.
SCOPE Summit 2020 in Orlando was no exception to that rule. There was a noticeable country absence at the event, which was a great shame, as there are currently some fantastic initiatives and trials being operated and brought out of the Far East and China. The conference also seemed to show a turning tide on the discussions, and this was very much felt throughout many of the talks.
My Imperial colleagues Dan McDonald, Dave Woodard, and I are often to be found in the vendor hall at a booth, talking to clients and other delegates as they mingle. We have expressed a few times that this year we might switch things around and take in the talks instead – and I for one am delighted that we did.
There were some truly excellent speakers and the subject range was diverse. When I wasn’t meeting with clients, I spent most of my time in the recruitment and engagement track. It’s a subject close to my heart, and very much drives what I do at Imperial. What I saw and heard was about a changing mood and attitude. The patient is no longer a faceless participant of a study, a number on the trial database… but a partner in the making.
According to Hassan Kadhim of Bristol-Myers Squibb, trial design will start to evolve and get shaped into decentralized trials. The focus is less upon just home transportation or access to the tests from your local center, but deconstructing the pre-existing rules for when and where a trial should be run. That means determining the needs of your patient community and creating a trial with the flexibility to meet the changing needs of your patients.
Another speaker in the same session on methodologies for connecting with patients shared the number 17 with the audience. This is the average number of times a day every person looks online at social media. That includes LinkedIn, Twitter, Facebook, Instagram, and any other form of social outreach. These online communication platforms are proving to be the greatest places where we can connect to potential trial participants.
At a fascinating table discussion on strategies for patient centric trial design and digital patient engagement, one of the moderators, John Linnell (a COPD patient and member of AstraZeneca’s patient partnership program) shared the fantastic engagement model that AstraZeneca has implemented. Over 80 percent of the studies they run now include patients at some point in the startup process: reviewing protocols, analyzing patient materials, and taking part in surveys to access patient needs.
The overriding feeling and take home was one of a shift in thinking. The patient as the partner.
Every nine years, the cost of bringing a drug to market doubles. So the idea that connecting with patients and including patients in trial design isn’t just effective recruitment, it’s logical for retention and reduced attrition rates, too. If a trial is designed to better meet the patient and care partner’s needs, the patient will be more likely to take part in the study, the study will recruit on time, and costs won’t spiral out of control.
Another speaker shared a statistic that we probably already know: oncology studies take 20 percent longer to get from Phase 1 to market, and rare diseases can take 70 percent longer than other indications. We heard that a lack of patients meeting inclusion/exclusion criteria was an issue, with patients not knowing about a study because they didn’t live near a center. However, they also shared that sometimes patients don’t hear back from sites because the sites might be overwhelmed. When we implement recruitment initiatives, we shouldn’t just focus on supporting the patients and ensuring the trial meets their needs, too – we should also look at ensuring the sites get the support they need!
There was a fantastic talk from Aaron Fleishman and Jessica Kim from BBK where they took on the role of MythBusters! If the patient is tired after a long day at the hospital, implementing support for them to ensure they had a hot healthy meal at the end of the day wasn’t just a useful solution for retention. It showed a greater level of understanding for what the patient actually needed and what issues they face not only when they take part in a clinical trial but in their day-to-day lives. This, along with so many other initiatives, was like a breath of fresh air – especially for me with my own experience as a patient and my connections with other patients.
Melissa Harris from Covance asked and effectively answered the question on whether industry could hear and were listening to what the patients were saying. Covance has patient registers and cohorts on its global database with over 30 countries and 50 indications accounted for. This enables them to have a greater insight into unmet needs, the burden that is faced by patients before and during trials, and helps to alleviate the barriers to adherence that so many trial face.
The idea that patients have a voice, and that their voice can be used effectively, showed real growth and development in industry thinking over the last five years. The message spoken the most was not patient centricity, but patient partnership. Christina Roman from the Cystic Fibrosis Foundation talked about the fantastic work done by EUPATI (a European trial patient engagement and education initiative I was already aware of and am a huge fan of!). Christina spoke of how many different points in the medicine R&D process EUPATI includes patient voices, and of the fabulous community voice initiative that the CFF has created to ensure the voice of the cystic fibrosis patient is heard and used to the wider benefit of the community.
If we can learn anything from SCOPE 2020, it is that we are evolving. As an industry, pharma is notoriously slow to adapt and welcome change, but this year there were many discussions that showed we are willing to open our minds to new opportunities.