Zoom, the Internet — This year’s eyeforpharma Barcelona continued notwithstanding COVID-19 constraints, featuring virtual panels of experts across a range of industry fixations. One particularly timely panel was called “The Evolution of Patient Collaboration.” Pharmaceutical leaders from around the world dialed in to discuss the critical new ways in which patients and their perspective are guiding clinical and commercial endeavors—and how this is particularly noteworthy during the pandemic.

To get things rolling, moderator Paul Simms, eyeforpharma Chairman, asked panelists to establish some basics, like, do patients and businesses in fact have aligned interests?

Paul Robinson, European Patient Lead at MSD, put a fine point on it: “Medicines are for the people, not for the profits,” adding that the more we remember that, the more profitable the medicines become. Ipsen Chief Patient Affairs Officer Isabelle Bocher-Pianka echoed the sentiment, saying, “When you create value for patients, with patients, you create value for your company.”

Robinson went on to explain why this mindset is particularly important at a time like this. “Now that we’re in a resource-constrained environment,” he said, “companies that develop medicines that patients want and need will thrive commercially. Companies that develop medicines that are scientifically very interesting but don’t actually meet a patient need will start to struggle.”

Simms noted that, with information becoming much more readily available through the gamut of digital channels, the number of patient organizations has grown to cover nearly the entire spectrum of diseases. So, he wanted to know: how should a pharma company collaborate with these numerous organizations?

Vanessa Pott, Merck’s Director of Patient Advocacy, pointed out that patient organizations assume many different shapes and sizes, and therefore a wash-rinse-repeat model will not yield productive collaborations. “We need to adapt to external circumstances,” Pott said. “Patient organizations that are entirely volunteer-run, and have much smaller capacity in terms of resources—they will of course operate differently from a fully staffed organization. This is true often outside of the US and UK and often true for smaller indications. It’s up to us to explain that internally. Just because we had a successful collaboration with patient group x in disease state y, doesn’t mean we can replicate that in another therapeutic area.”

According to Robinson, an obvious place to start is with patient input into the development and design of clinical trials. At MSD’s cross-functional workshops, he shared, “We start off by saying we’re going to try to figure out how patient engagement and patient input may help you with your job, and very often we get a bunch of blank-looking faces.” But, as the day progresses, professional facilitators help the representatives from each functional and business area articulate their own objectives. Then, structured exercises help them think through where their objectives and patient objectives overlap, uncovering a win-win opportunity. “There are nuggets in each functional area, and we need to surface those at the country level.”

And it’s critical to do this early, said Boucher-Pianka, because, that way, by the time you’re getting to, say, phase III of a trial, you have “institutionalized” the patient perspective in the pertinent therapeutic area. So what you’ve built is an essential, guiding principle.

In fact, both the FDA and EMA are going to be coming out with more and more requirements for pharma companies to demonstrate how they captured patients’ preferences in order to earn approval. So, patient involvement at the core of the development process is only going to grow.

The panel then pivoted to how patient affairs might be specifically affected by the current pandemic. Boucher-Pianka noted that, right now, patients across therapeutic areas want specific information about COVID-19 and their disease. Accordingly, Ipsen works with vendors to gather the right data then distill and disseminate the right guidance.

To bring the discussion to a close, Pott speculated about what pharmaceutical leaders can actually take from the current moment and apply going forward. “What can we learn from patient communities for whom this isn’t the new normal but rather their normal-normal?” For example, she said, it’s often challenging to convene groups of cystic fibrosis patients, for medical reasons. “As an industry, I wonder if we can learn from them to meet the needs of the current moment.”

About the Author:

Ben helps spark innovative healthcare thinking as Associate Director of Innovation. Previously on the editorial staff of Vanity Fair, he brings experience in engaging, rigorous storytelling to the healthcare world. Ben’s goals are to move brands to rethink their roles, own their evolving narratives, and maintain vital and vigorous consumer relationships.  

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