How pharma companies and patients can become true partners

While navigating the U.S. healthcare system, patients give pharmaceutical companies and other ecosystem players clues about what problems need to be solved. Some patients aren’t filling new prescriptions because they seem (or are) unaffordable. Or, they’re failing to show up for scheduled appointments because they can’t get childcare coverage or transportation. Others have stopped taking treatments that were working for them because they don’t understand the benefits of continuing treatment. These actions speak volumes—but are pharma companies listening?

Manufacturers need to learn how to harness the power of the patient voice—including individual patients, caregivers and representatives of patient advocacy groups. By listening early and continuously, co-creating solutions and turning insights into specific actions, pharma can truly partner with the patient community. This is a big shift from how these organizations function today, but it would ultimately improve patient experiences, health outcomes and business results.

Forming partnerships across the healthcare ecosystem—beginning with patients—could help the pharma industry boost its efforts to become more patient-focused. And while patients should be a key priority when pharma companies explore external partnership opportunities, traditional players, like health plans, healthcare professionals and provider organizations can be strong partners and allies, too. There also are new entrants to consider, such as technology companies and others that have less traditional models aimed at disrupting healthcare. 

Pharma companies have been talking about patient centricity for so long that they must have already achieved their goals, right? Far from it. To understand what progress has been made on this front, ZS surveyed senior leaders from more than 30 pharma companies as part of the 2019 "ZS Patient Centricity Industry Study." While pharma executives overwhelmingly agree (93%) that patient centricity is critical to their organization’s future success, just one-fifth (19%) believe they have made meaningful progress to date.

Manufacturers continue to be innovation machines but focus their efforts on discovering and developing molecules rather than designing the best patient experience. As a result, high-value activities, such as supporting patients in getting to a diagnosis, identifying appropriate treatment options and helping them start and stay on their therapies, often are overlooked. While companies do conduct periodic patient research in their respective therapy areas, it’s typically episodic and narrowly focused. They might be gathering information from patients specifically to inform or drive individual business objectives. Instead, they need to gain a broad understanding of the patient perspective to identify how best to provide support. The industry is awash in anecdotes of brands that could have addressed a specific patient issue more easily if uncovered earlier in the asset life cycle.

It’s possible to break with tradition and start reaping the benefits of listening to patients. To visualize this shift, imagine learning to interact with patients as consistently and automatically as the way we breathe. Think of the inhale as pulling patient insights in from a variety of sources, including advocacy groups, individual patients and caregivers, and through a variety of channels including, advisory boards, market research, social listening and primary and secondary data analytics. After breathing in, pharma organizations can integrate the learnings into their own decisions and strategies. The exhale is the way pharma uses this new information to engage with patients and others.

It’s about creating a better experience for patients and their caregivers, whether that’s by improving the diagnostic or treatment experience, making a treatment more convenient, redesigning clinical trial protocols or identifying the endpoints that matter most.

When’s the best time to integrate the patient voice? The earlier, the better. Pharma companies need to outline a plan that integrates patients into the entire product life cycle—not just at the end but from the very start. Patients can provide input into identifying unmet needs and understanding what the diagnostic process feels like from a patient’s point of view. With that knowledge, pharma companies can discover new ways to simplify the process, reduce friction points and build more useful and relevant solutions.

One good place to start is with the traditional drug discovery and development model. The process is designed to encourage speed to market, leaving companies racing to enroll the first patient or publish study results. As a result, pharma companies have incentives that unintentionally deprioritize patient engagement opportunities that, in the end, could contribute to better products. By demonstrating the many benefits of bringing the patient perspective in as early as possible, we can build a strong business case for building in a little extra time and budget rather than waiting until the product is on the market. With this approach, pharma companies can work through any issues in the early stages of product development—which leads to a better patient experience and, likely, more commercial success down the line.

There’s strategic importance to designing patient-focused support solutions. After all, pharma companies aren’t simply launching molecules. They’re launching a whole package. Can you imagine if Apple launched a new version of the iPhone, but the apps didn’t work? Similarly, pharma companies need to bring services and support to market alongside their assets. After all, it’s far quicker and easier to change the patient experience by adding services and support than it is by changing the molecule.

Failing to gather patient insights during drug discovery and development can have downstream consequences—for both patients and manufacturers. I’ll share an example to illustrate what can happen when patients aren’t involved early in the process. An oncology drug company was preparing to launch an adjuvant therapy that offered a significant survival benefit (three months) over the existing standard of care. Healthcare professionals (HCPs) responded positively to the target product profile because the product had strong clinical benefits and relatively few adverse events. However, HCPs didn’t pay much attention to the dosing regimen: an infusion once every three weeks.

The standard therapy, also an infusion, was given once every four weeks. Adding the new therapy would create three additional trips to the hospital or infusion center in any 12-week period. When patients were asked about the therapy, many said that despite the potential benefits, they’d be reluctant to ask caregivers to spend more days transporting them back and forth. The takeaway is that had this specific manufacturer gathered this perspective earlier, it might have been possible to adjust the dosing schedule to align with the standard of care.

What else could have changed if the manufacturer gathered information beyond patient insights? Even if the dosing schedule couldn’t be changed, could other partnerships across the ecosystems have helped to address this scenario? Would it have helped to loop in health plans early in the process? What about physicians? 

Pharma has developed a better notion of the central role that patients play in the ecosystem and are beginning to adjust their decision-making processes accordingly—but there’s still a long way to go. At the heart of it all is providing a better patient experience. For drug manufacturers, that means looking beyond how patients interact with their own organizations to the way in which they interact with the entire healthcare ecosystem.

Manufacturers can create more avenues to connect with patients directly, but they also need to recognize the instances when another ecosystem player might have more to offer. There are many points across the product life cycle where pharma can benefit from engaging directly with patients. But when we focus instead on the patient’s experience throughout their healthcare journey, the pharma industry isn’t always a trusted source of support.

One exception is the rare diseases space where it’s often valuable to have a pharma partner involved at every step, from screening all the way through to diagnosis, treatment, disease management and potentially a cure. But even with rare diseases, especially in cases where there are multiple potential treatments, patients may want a more objective source of information, such as a patient advocacy group or treatment center of excellence.

Pharma’s role (beyond the products) in other therapy areas is less clear cut. Take cardiovascular disease, for example. Ecosystem players, like physicians, health plans, the government and many others, have clear incentives to educate people about how to take better care of their hearts. One goal could be to help parents teach children from an early age about heart health (including the role that good nutrition and exercise play) and why our hearts are so important to all the other health dimensions. There’s an opportunity for pharma to partner with these entities on their efforts—via sponsorships, philanthropic efforts or by contributing patient insights—but it’s unlikely that pharma would take the lead on these types of initiatives.

Even though other ecosystem players might have a more appropriate role to play during certain parts of the patient journey, pharma doesn’t have to sit on the bench. By developing a deeper knowledge of patients’ concerns and unmet needs, pharma can identify when to take the lead or seek a partner and when it makes the most sense to step aside. There are many opportunities for pharma companies and other ecosystem entities to join forces to solve some of the underlying lifestyle and behavioral issues driving chronic disease, help patients manage costs, reduce system complexities and improve access to care.

It’s critical that drug manufacturers understand precisely what patients are experiencing before figuring out what services and solutions to adapt, change or add. Truly partnering with patients can help drive better health outcomes and improve business results.