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Why Patient-Centric Organizations Aren’t Afraid to Get Messy

For too long, the market researchers working in Pharma have heroically tried to apply the standards of medical investigation to patient insights.

In the lab, it’s possible to ensure pristine samples, vials untouched by any agents or stimuli other than those the technicians have introduced. But in the big, noisy, social world, patients and caregivers are educating, advocating, and influencing one another all the time.

In the lab, researchers can isolate and control a handful of variables. But in the dynamic, rapidly changing marketplace, patients and health care professionals alike are continuously “tainted” by myriad sources and forms of information.

In short, in health sciences, the pristine and representative “sample” rarely exists. Caregivers and patients are fully cognizant of their condition and actively coping with and trying to manage it. They are inquisitive, emotional, changeable, and involved agents in their own care.

And, in a climate where Pharma companies are actively trying to evolve from brand-driven to patient-centric organizations, from a focus on product portfolios to an obsession with health outcomes, ongoing access to assertive and engaged patients should be recognized as an enormous advantage.

In a recent interview Sanofi’s Chief Patient Officer Dr. Anne Beal, described a three-pillar framework for creating a more patient-centric company. “The first pillar: Input and understanding. It’s about truly engaging patients in a meaningful way so that patients can inform the work we are doing within the organization. Many people also think about this in terms of market research – but this is about so much more. It’s about actively listening – not just around a product – but for what it is that patients need.”

“This is about so much more” is the operative phrase here. For pharma researchers, the challenge is not about how to conduct market research in a highly regulated environment. We all understand the need for compliance, and there are processes to ensure it. No, our mission should revolve around how to help internal stakeholders engage with patients and caregivers not just as subjects for episodic research, but as ongoing partners and co-creators of the products, services, messaging, and programs that will lead to better health outcomes.

Patients and their advocacy groups are more than ready for this kind of continuous involvement, according to a recent study conducted by InVentiv Health Public Relations Group. “Advocates from the 43 interviewed patient groups – which included organizations such as the Lung Cancer Alliance and CureDuchenne – said pharmaceutical companies too often mistake social-media interactions with patients for relationships and that a true partnership includes discussing an array of subjects, including the progress, successes and failures in the drug-development process.”

This study echoed what we know to be true not just in Pharma, but in every industry: To become a truly patient-centric or customer-inspired organization, the voice and stories of end users must be consistently infused into the company, not just at every phase of the product life cycle, but in reflecting every aspect of patients’ lives. Indeed, this study enumerated a wish list of changes that patient advocacy groups seek in order to build stronger relationships between patients and Pharma companies to the greater mutual benefit of both. Among them is the opportunity to provide early input, not just in the design and execution of clinical trials, but also in disease awareness and education campaigns.

This continuous engagement can have a material impact on patient outcomes. For instance, as companies try to develop value-added services for patients, they’re learning the hard way that needs and preferences are different, not just from one person to another, but depending on where a given individual is on their journey from diagnosis to treatment to ongoing disease management.

Long-term engagement is critical, not just to understanding patients, but to empowering them to inspire the companies that serve them. The way to create that understanding is not through data alone. Bar charts and scatter plots, though indispensable to medical research, can never convey the feel, meaning, and trajectory of a life. Instead, as Christine S. Brown, executive director of the National PKU Alliance, argues in the InVentiv study, “If pharma is going to enter into a disease space, they need to be open to hearing directly from patients. They need to hear [patients’] stories and connect with them.”

So yes, by all means, let’s apply rigor where possible and appropriate, and of course, operate within regulatory constraints. Pharma market researchers are often bound by the need to operate in a blinded fashion – at least before a drug gets approved — and must be scrupulous about avoiding even the appearance of marketing or promotion. But those requirements don’t require us to be timid, dry, or to turn away from the tremendous resource that active, engaged patients and caregivers represent.

So let’s go beyond the template of natural science research when trying to build patient-centric companies. Instead of clinging to the unobtainable grail of studying a representative sample in our social media-dominated, Internet-informed world, they should embrace the availability and eagerness of empowered patients and caregivers. Let’s seize the opportunity to work with the people they want to serve.

This article was originally published in MedCity News.

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