Promoted by Reuters as ‘The only destination for North American patient centricity leaders’, Pharma & Patient USA 2021 was a 3-day virtual event that took place in November 2021 with a mission to ‘Embed lived experience across the value chain to surpass centricity and embrace ground-breaking integration’. Prime Global’s VP Patient Recruitment Services, Ross Jackson, was in attendance and shares his insights from the event.
Pharma & Patient USA 2021 was based on showing how patients and pharma can work together to improve outcomes for all – with a particular focus on going beyond what already happens in this regard, to ensure patient engagement sits at the heart of the process of new treatment development.
Day One: Diversity, Equity, and Inclusion
One of the core themes was increasing Diversity, Equity, and Inclusion (DEI) in clinical trials – something that has become a major topic of discussion in recent years, even more so since the advent of the Covid-19 pandemic. Several of the sessions had themes relating to encouraging people from different backgrounds to participate in trials, or how diversity is a central theme for patient-centricity.
Day One featured a session on ‘Overcoming site barriers in trial enrolment for underrepresented populations’, which saw a panel of pharma and patient representatives discussing how research sites can help in the process of identifying and attracting people onto trials who might otherwise not be as well represented as they should be.
One of the key issues raised by the panel was the necessity of making it easier to attend trials. ‘Patients are people’ was a key theme throughout this session (and many others), highlighting the fact that people have many other things going on in their lives outside of their participation in a trial. The burden on people attending research sites could potentially be so great that it may take someone three days to prepare for attendance, then three days to recover afterwards. This is surely something that needs to be taken into account when designing a trial protocol, as well as being addressed by the research sites themselves.
Repaying participants’ expenses was suggested as a minimum way to help overcome barriers, with a more effective solution being some kind of pre-paid arrangement for travel and/or accommodation meaning the patient doesn’t have to pay out of their own pocket then claim back the expense afterwards. A step beyond this would be to have a ‘concierge-style’ service where the travel and accommodation arrangements are taken care of on the patient’s behalf.
This was an important discussion point, as we know that reducing the financial and physical burden on people attending research sites to participate in trials will open up the opportunity to a wider range of people who might not otherwise be able to consider it.
Other factors that were discussed included having patient-facing materials available in multiple languages and investigating the possibility of having flexible clinic hours to allow people to attend after work, or opening up the trial to a more decentralised or hybrid method of operation.
Day Two: Patient-centric digital solutions
One of the presentations on Day Two was titled ‘The future is here now: Collaborate with patients to co-create digital solutions’, talking through how AstraZeneca have worked in partnership with patients to develop patient-centric digital solutions.
The central theme of this presentation was that the future of healthcare is going to be based on digital solutions – but also that the future is already here, with digital becoming increasingly important in every aspect of both people’s lives and the healthcare decisions they make.
One of the core methods of using digital is in the collection of data – for example, through utilising digital and wearable tech in the home for monitoring and reporting purposes. Plus, adding in the analytical capabilities of digital for data generation and diagnostics is extremely beneficial for delivering the best ongoing results.
At the heart of AstraZeneca’s collaboration methodology is its Patient Partnership Program (PPP), which they set up in 2017. PPP is a platform that supports an open line of communication between patients and caregivers around the world, which provides the company with regular feedback from patients to whom they otherwise wouldn’t have access.
Prior to the PPP, it may well have been that patient centricity was simply a ‘buzzword’, whereas since its development, the patient advocate in this presentation suggested that AstraZeneca at least has been ‘walking the walk’, rather than just ‘talking the talk’.
The PPP system is also interesting from a recruitment angle, as it allowed AstraZeneca to redesign their informed consent procedure and eligibility criteria for a ‘Trial X’ that enabled them to hit their enrolment targets four months ahead of schedule – thus saving resource and expense compared to the usual delays that are incurred due to under-enrolment.
Another benefit of the collaboration was in usability of a digital solution during a trial. Involving the people who would actually be using the tech enabled the development of processes and instructions that were much simpler to use for the patients – which wouldn’t have been the case without that collaboration.
A great takeaway phrase from this session was John Linnell, the patient advocate, saying ‘If it’s without us, it’s really not about us’ – which neatly encapsulates the reason for including patients at every stage.
Day Three: Pharma and patient partnership
Day Three’s sessions were based on the relationship between pharma and patients at the commercialisation stage of the process – i.e. once the treatments are available for sale. One session investigated the unique culture at pharma company, Sanofi, which has been in place over the last ten years or so.
The core of the approach taken is to have each element working together as a ‘united front’, rather than the somewhat siloed situation that is often the case in large pharma organisations. Such that R&D, public affairs, patient advocacy and policy divisions within the company all work together to deliver the best results for patients.
At every stage of the development process, from pre-clinical to commercialisation, patients are an integral part of activities. The principle being to define with patients what the desired outcomes are going to be for patients. Sanofi calls this approach their ‘Integrated Patient Engagement Program’.
Overall, each of the sessions at Pharma & Patient USA 2021 was based on the idea that pharma and patients working together in a truly collaborative fashion – not just as some sort of patient centricity check-box exercise – delivers better results and outcomes for all concerned. Which certainly chimes with our approach at Prime Global and is a great indicator that the industry as a whole is heading in the right direction.
Get in touch with the Prime Patient team via email (PatientEngagement@primeglobalpeople.com) or Twitter (@PrimePEPTalks) to learn more about how we activate patient insights to deliver a triple win for patients, pharma, and society.