The Scoop on Collaboration between Industry and Advocacy

Anthony Yanni
September 07, 2022

It’s a big, important story – but it’s easy to get lost in the details. So, let me take a newspaper reporter’s approach here and address essential questions (Who? What? When? Where? Why? How?) about changing relationships between the biopharmaceuticals industry and patient advocacy. In this case, the “who” is “us”: the readers of this blog.

For decades, two endeavors vital to the progress of health care took place in isolation rather than in close collaboration with each other. These are the discovery, development and delivery of new medicines on one side, and the advocacy, support and understanding of patients on the other. Fortunately, the biopharmaceuticals industry and the patient-advocacy community increasingly appear determined to make up for lost time. We are working together—comprehensively, ethically, and enthusiastically—and the early results look promising.

At Astellas Pharma, our intensified collaboration with patients is relatively young and yet we already can point to numerous breakthroughs. For example, we discovered some of the obstacles to medical conversations about menopause and the resulting effectiveness of treatments. Adult patients with primary muscle diseases and their caregivers opened our eyes to issues around diagnosis delays that will help our development and delivery processes. Talking with patients who are dealing with the chronic symptoms of strokes gave us a much deeper understanding of their needs and the importance of minimizing the invasiveness of any new treatments.

Always. New treatments emerge across a long, complex, multi-stage process that some call the “drug-development pipeline.” It extends from a “discovery” stage in which potential scientific breakthroughs are linked to unmet needs in medicine, to a “development” stage in which candidate treatments undergo rigorous testing in actual patients, to a “delivery” stage concerned with post-approval patient access to medicines. Patients and their advocates have much to contribute to our industry at each of these stages.

Going back to earlier examples, what Astellas learned from patients in specific disease areas has informed our discovery-stage insights on treatment gaps and improved our understanding of development and delivery execution.

Geographically speaking, industry-advocacy collaboration is important around the globe. The prevalence of specific health problems, openness to diagnostic testing and new treatments and the practice of medicine itself vary widely between countries and cultures. The more advocates we can collaborate with globally to understand these differences, the better and faster we will be able to meet patients “where” they are (quite literally).

But there is another aspect of “where,” having to do with patients’ individual journeys across the symptoms, diagnosis, treatment and chronic manifestations of diseases. Failing to understand where patients are on their personal journey, and their diverse challenges along the way, has kept many new medicines from delivering their full benefit and has made it more difficult for industry to deliver solutions that best fit their needs. Industry-advocacy collaboration can help us to create the best-fit solutions for patients in the future.  

At the risk of paraphrasing a notorious bank robber—who offered the simple explanation that he robbed banks because that’s where the money is—let me be equally straightforward about why industry needs to collaborate with patients, their caregivers and their advocates: because that’s where the insights are. As the leader of a still-new practice that we call “Patient Centricity” at Astellas and across the field of health care, I sometimes get a pointed question: “What was pharma centered on previously, if not patients?” Ouch, but it’s a fair question.

The answer is that we put a great deal of faith in our own expertise as a primary source of understanding. That expertise is considerable—lots of compassionate and smart people go to work as doctors, scientists, marketers and policy experts in the drug industry—but we know now we were missing important leads and lessons by not seeking out insights directly from patients at every stage of our work. That is why we’ve changed the focus, with the help of patient-advocacy groups.

I’m seeing these behaviors increase across the industry, and at Astellas we are pioneering new approaches to shift the focus of our people to be hyper-aware of outcomes that matter to patients. It starts with changing our organizational cultures. At Astellas today, initiatives such as broadcasted patient interviews, patient-oriented problem-solving contests, employee testimonials and challenging education programs open our hearts and minds—and improve our collaboration skills. Simply put, our goal is that every Astellas employee begins and ends each day with the realization that they are contributing directly to new patient solutions—for and with patients—regardless of whether their business cards say clinical research, medical, finance or marketing.

At the same time, those of us whose job titles do include patient centricity are tasked with additional responsibilities. We create and promote collaboration models, specialized processes and decision-matrices that can be used to capture and unlock patient insights, which in turn are fully integrated into portfolio decisions throughout the developmental and delivery lifecycle.

When we work with patient-advocacy organizations now, and the people they represent, we have three imperatives. First, relationships need to occur at eye level—constituting true partnerships. Second, relationships need to be bi-directional. We have at least as much to learn from patients as vice versa. Finally, relationships need to be long-term—getting beyond today’s immediate need and recognizing that the real value of collaboration emerges from years of mutual trust and frequent touchpoints.

So that’s the story on collaboration between industry and advocacy. It’s breaking and developing. Check back often. Better yet, play your own part.

By Anthony Yanni, MD
Senior Vice President and Global Head of Patient Centricity at Astellas Pharma, Inc.