DIA Europe: Patients Get Their Say. Now for the Doctors?

With the patient voice getting progressively louder at industry conferences over the last decade, it was no surprise that patient advocacy featured prominently, both in terms of speakers and discussions, at this month’s DIA Europe meeting in Vienna, Austria (5–7 February). This year, the DIA even chose to open its European meeting with a lively and provocative patient perspective from Dave deBronkart (aka “e-Patient Dave”).

deBronkart was diagnosed with stage IV, grade 4 metastatic renal cell carcinoma in 2007. The median survival rate was 24 weeks. But when his primary physician suggested he might like to look at ACOR.org, a network of patients with various cancers, he started an online journey that he helps to credit with saving his life. Within two hours of posting his first message, for example, he “got facts and practical advice that to this day don’t exist in any journal article or establishment website”. The online patient community, he added, “has better information than most hospitals”. Against the odds, deBronkart beat his cancer, and while he was quick to pay tribute to “brilliant science and top-notch clinicians”, there’s no question that his own, active participation in his care played a significant part in his recovery. More than ten years on, however, deBronkart told the conference that “the paradigm of patient care” is still broken and must evolve. “Patient-centred care demands that patients are listened to.”

deBronkart’s concerns set the agenda for the many of the sessions that followed, with not just patient advocates, but regulators and industry representatives pushing the patient empowerment and engagement line. Susan Manoff, Executive Director for Vaccines and Neuroscience in Merck’s Office of the Chief Patient Officer, told the conference that to truly drive change, “patients need to be involved systematically throughout the entire value chain” and should “be instilled in everything that we do.” She went on, “For us, patient partnerships truly means there’s a dialogue with the patient on an ongoing basis.” Looking to the future, she called for “systematic patient engagement across all the facets of healthcare.” In the same session, Philip Meulien, Executive Director at the Innovative Medicines Initiative, said that the patient voice “can only get stronger and stronger and will have the main say in how systems change”.

Some patients themselves, however, still had their grievances. The conference saw emotive testimony from the International Porphyria Patient Network’s Rocco Falchetto, who recounted his and others’ experiences with erythropoietic protoporphyria (EPP), a rare and debilitating disease that causes acute photosensitivity of the skin. Falchetto’s group was one of a number of bodies that lodged appeals against a decision by NICE’s Highly Specialized Technologies committee to maintain its December 2017 recommendation that Clinuvel’s EPP drug Scenesse (afamelanotide) should not be funded under the NHS for treating patients with the condition. Both EMA and NICE, said Falchetto, have failed to acknowledge the evidence provided in patient testimonies and by expert physicians “on the overwhelming clinical benefit” of Scenesse. “If you involve patients early,” Falchetto told the audience, “it does not have to come to an appeal-as in our case. Take us seriously!”

From its conference line-up, at least, it appears that the DIA is taking the patient voice very seriously. What was less evident, as one audience member at the “Patient Engagement as a Strategic Imperative in Therapeutic Innovation” session pointed out, was the voice of the physician. “I see no physician on this panel,” she said. “We have a patient, a regulator, and an industry rep. But if you are a patient, the first partnership you form is with a physician.” Nicola Bedlington, Secretary General of the European Patients’ Forum, was quick to agree-“The medical profession’s voice is perhaps not as loud as it could be”-while Guido Rasi, EMA’s Executive Director, explained that it’s difficult to include the general practitioner: “We try to engage them but it’s not easy.” Philip Meulien added, “The problem isn’t about finding GPs, it’s about how to integrate GPs into projects. It’s somewhere we need to improve.”

Perhaps, then, this sets the challenge for future meetings. With the patient voice turned up to high volume, will we now hear more from the physicians?