Oxford PharmaGenesis was delighted to attend the recent eyeforpharma Patient Summit Europe in London.

Our stand was the product of a collaboration between the Digital and Patient Engagement teams. Made to look like the platform of a Tube station, including a curved stand and (although we weren’t allowed to get a pigeon), it was an eye-catching way to introduce our ‘Bridge the Gap in Communications’ theme. Given that a strong theme of the conference was how pharma can communicate and engage with patients more effectively, we feel our theme was very on the right track.

Day 1 highlights

The meeting kicked off with a joint presentation by Rachel Giles, Chair of the International Kidney Cancer Coalition (IKCC), and Isabelle Bocher-Pianka, Chief Patient Affairs Officer at Ipsen, who spoke about the importance and value of designing patient support programmes with patients, rather than for them. Dr Bocher-Pianka presented the approaches that Ipsen uses to listen to patients, including through patient advisory boards, patient platforms, focus groups and surveys. Dr Giles introduced the IKCC and their focus on evidence-based advocacy, which can improve patient outcomes. She then went on to present the results of a global patient survey conducted by the IKCC. Of nearly 2000 respondents, 70% had never been asked to participate in a clinical trial, although 89% would have participated if they had been asked. Furthermore, 43% did not understand their kidney cancer subtype and 38% were not told their subtype at diagnosis. Given that treatment for kidney cancer varies hugely depending on tumour histology, shared decision-making can be stymied if the patient does not know or understand what type of kidney cancer they have. Indeed, 29% of patients were not engaged in their treatment decisions at all. There is a gap in how healthcare providers communicate with kidney cancer patients about their disease.

Lode Dewulf, Chief Patient Officer at Servier, reiterated the message that for patients is not enough. In the same way that a well-meaning parent cooks a delicious, nutritious, organic, no-GMO meal for their child, that effort is wasted if the child just wants to eat chicken nuggets and chips. Companies must not assume that they know what is best for patients; they must listen and collaborate with patients to avoid any mis-steps, however well-meaning. Lode then went on to explain that the Holy Grail in patient engagement is true co-creation and that true engagement means letting go of control to some extent. Additionally, patient engagement must be scalable to lead to industry-wide change.

Later in the day, Catalina Cernica, Head of Innovation UK at LEO Innovation Lab and CEO of the Health & Happiness Research Foundation, introduced one way that patient engagement can be massively scaled: the PsoHappy platform. PsoHappy is an online platform that has gathered insights from more than 200 000 patients with psoriasis to identify unmet needs in this group.

Alastair MacDonald, Senior Vice President of Real World Research at Syneos Health discussed how virtual trials can make trials more timely, cost-efficient, and improve data quality. Virtual trials can lead to shorter enrolment times, to a lower burden on participants, and sites can focus more on the patients rather than conducting study procedures. Furthermore, technology can make trial participation easier in a number of ways, including apps to provide disease and study information, Alexa chatbots to book taxis to clinic appointments, wearable technology to collect physiological data and facial recognition to measure adherence. However, there are some challenges that need to be addressed before virtual trials become the norm, including increasing company, physician and public trust in the technology, investment in infrastructure and concerns over data protection.

Day 2 highlights

Highlights from the second day of the meeting included a panel discussion focusing on how patients and pharma can work together to improve value to the patient. David Palacios, Head of Global Patient Advocacy Pharma at Novartis, highlighted that pharma companies should work collectively to help patients’ understanding of diseases and treatment options. Panel members advocated early engagement with patients. Also, as an aspiration, a long-term approach to commitment should be taken, which is endorsed by top-level colleagues and that is not driven by commercial interests. The panel agreed that the measurement of value should not be driven by metrics; an ethos change is more important. Value should be measured on an initiative-by-initiative basis, with a constructive conversation about outcome measures taking place at the start of a project, with input ideally from patients; metrics can be qualitative or quantitative.

Marta Garcia, International Centre for Therapeutic Research at Servier, shared the experience of gathering patient insights on a European clinical study conducted in children with autism, describing the challenges in implementing patient centricity in an area that has diverse patient needs and where there is scepticism among patient organizations about the role of pharma. She advocated engaging local affiliates and patients at an early stage, to be realistic in expectations and to have contingency plans in place; learnings from experience are important to implement internally for future projects. She believes that the generation of co-created patient recruitment and retention materials will have reduced the number of discontinuations on their study so, despite challenges, the activities have clear value.

David Chandler, a NICE lay member, brought to the meeting his experiences, sharing the approaches that NICE take to create an inclusive environment and elevating the patient voice at meetings. These include referring to everyone by their first name – no titles used, the need for a strong chair, and glossaries of terms being provided to aid understanding of the many acronyms and terms used.

At the end of the meeting, Lode Dewulf and Nicholas Brooke, Executive Director at Patient Focused Medicines Development (PFMD), shared the tools created/being created by the PFMD that help to make patient engagement habitual and systematic. Compliance guidance, a fair-market value calculator and training videos will be available soon, which will support the pre-existing seven quality criteria guidance and Synapse tools.

It was great to attend the Patient Summit Europe 2019 and to hear about new innovations in the field of patient engagement. We look forward to attending eyeforpharma Barcelona 2020 in March.