On September 30, the London-based staff of VMLY&Rx, a healthcare communications company, dedicated their annual Foundation Day to supporting the work of Alliance to Cure. Understanding the primary mission is to accelerate the cure, they set about creating materials to be used to approach industry and interest them in CCM. Materials include an informative slide deck that presents the partnership opportunities, a map of the disease’s significant biological pathways with the medicines already known to affect these, and the outline for a white paper. Dr. Ankita Batla, Dr. Rick Morton, and Caitlin Rich spearheaded the day. Dr. Batla’s words below about the importance of patient advocacy organizations in treatment development are worth reading.

Powerhouse Partners: Why Patients Are the Foundation of Everything in Health

Doctors are starting to recognize something that I learned as a physician many years ago: a person’s health is much more than a set of clinical symptoms; there’s a deeper human context that needs to be understood. Today, progressive physicians are deferring to patients to uncover that context. They’re abandoning paternalism in healthcare and giving patients the leading voice in decisions about their care. These are momentous steps forward. We can’t allow COVID to set the movement back.

So how do we keep progressing? Pharma can play a significant role. Companies are increasingly discovering that if they properly partner with patient groups—and work with them to understand how a given condition impacts all aspects of patients’ and carers’ lives—the opportunity to transform their health experiences is huge.

After decades of developing solutions in isolation, companies are starting to see the value of co-creation. The smartest are bringing patients into the mix early in the development cycle and working with them throughout it, as true partners, to design treatments and services that match their everyday needs.

It’s a wonderful development. Because, as the rise of patient advocacy groups (PAGs) over the last three decades has shown us, the power to drive change sits firmly with patients. All they need is the tools to engage, a seat at the table, and the knowledge that their voice will be heard and valued.

The influence of patient groups is growing. Everywhere you look, and in almost every disease category, there are amazing examples of patient advocacy driving incredible change. Today, PAGs are no longer just support groups: they’re powerhouses and catalysts, driving research, guiding policy, and influencing the way regulators make decisions. Their achievements are fired by a passion that only comes from being personally affected. When it’s your child, your loved one, or your life, determination is elevated to a whole new level. Pharma companies invest heavily in R&D because they want to make a difference. But patient groups invest their hearts and their souls to make change happen, because to them it matters more.

It’s no surprise that today’s pharma companies want to work with patient groups every step of the way. How can we be distant from them? We have to get closer. If it works for patients, it works for us all.

In pharma, patient advocacy strategy has traditionally had a very narrow focus. In the past, and arguably still today in some parts of the industry, working with patient groups was often little more than asking patients how a drug made them feel. This “insight” would inform the value proposition and shape reimbursement strategy, but we were looking at the patient contribution through a very limited lens. We now know it’s nowhere near enough.

If we’re going to maximize the real power of patient advocacy, we need to go deeper than simply understanding the clinical implications of disease. We need to understand its impact in its full human context. What is it like to live with a condition? How does it affect all aspects of life? Rather than just focusing on symptoms and treatments, we need to find out how a condition impacts relationships, routines, livelihoods, everything. That means building deep, trusted partnerships with patients so we can see the bigger picture and co-create connected health experiences that make a meaningful difference.

The patient voice is getting louder and stronger and the role of PAGs in amplifying it is becoming ever more powerful. But, together, there’s much more we can do.

Patient groups are driven by a raw, human passion that, like it or not, can never be matched by commercial organizations. However, many PAGs are small operations that don’t have the resources, technical expertise, or marketing capability to make their voices heard at scale. The opportunity for pharma to help them, and to harness the power of patients to create better health experience, is immense. It’s why VMLY&Rx hosts the world’s largest patient outreach project, Foundation Day, giving PAGs access to the tools and expertise that can help carry their voice worldwide.

Initiatives like this are vitally important as we push for true collaboration. Because yes, there’s a power shift in healthcare, with patients increasingly calling the tune. But if we want to make the most of it, we need to give them the tools, platform, and freedom to co-create, and pave the way for proper patient partnerships.