Patient centricity still at the center of discussions, after a decade of effort


Medullan had a great time attending the premier eyeforpharma conference April 2019 in Philadelphia. The conference was well attended by pharma representatives, as well as thought leaders from the healthcare ecosystem, the FDA, and even patient advocates.

If there was one major takeaway from the eyeforpharma conference in Philadelphia, it is that “patient centricity” a long-standing aim remains out-of-reach. By my estimates about half of the speakers at the conference mentioned patient-centric initiatives, needs, and approaches. A glance at the last ten years of eyeforpharma archives shows that the topic has always been on the landscape. Still, industry leaders and advocates remain future-focused and hopeful (or at times frustrated).

Anthony Gucciardo, SVP Strategic Partnerships at the National Kidney Foundation noted during his panel that  -“We talked about involving patients in the drug design process a decade ago, why are we not there yet, despite the evidence that it helps?”

In a poll taken at one of the sessions, the responses resonated how pervasive yet disjointed patient centricity efforts are:



Poll: Who leads patient centricity at your company?


Amy Nicole Nayar, former Head of Global Patient Relations at Abbvie, described Patient Centricity 2.0 as “moving from innovation within functions to leverage insight across functions”, creating a virtuous cycle. 

So, where is the gap between patients and pharma? It would appear pretty much everywhere, but to simplify, here are three main themes: during early drug development and clinical trials, with disease support and advocacy, and in developing meaningful post-marketing tools and services.


A. During Drug and Clinical Trial Development 

Even today, very few patients meaningfully participate in the drug development process and clinical trial design. The discussion about what patients really need and how drugs early in the pipeline should respond to those needs are often siloed or sidelined.


Pujita Vaidya, Senior Advisor, Patient-Focused Drug Development Program at the FDA said it well — “Patients are truly experts in the diseases they are living with.”

Pharma must take into account the experience of the patient, especially their disease’s impact on lifestyle, the cost and affordability of the drug, and other factors that affect adherence. The only way to do that is to have open and ongoing conversations with patients during the development of a drug, not just after.

The realities of living with a disease relate what should be measured and included in a clinical trial, but one of the polls during a patient-centricity session confirmed that the industry still has some ways to go.


Poll: Do you consistently and effectively involve patients in defining endpoints and trial design?


Paul Simms, Chairman of eyeforpharma – “I find it very hard to believe that anyone would not involve patients in the early design of a clinical trial. From a cultural and attitudinal point of view, it’s hard to believe that we still need to be talking about this. Certainly all the data show that engagement increases the likelihood for success.”


B. With Patient Support and Advocacy 

Patients trust the advice and experience of other people like them who have walked in their shoes and have their condition. Consider that the most successful types of disease support forums are not those that pair patients with experts, but patients engaging with patients like them. (Even when those forums are run by Pharma companies.) Patients trust in the experiences of other patients and are more likely to share their own experiences as well.

Pharma has been slow to recognize the power of the voice of the patients who use their products. Instead of focusing on “patient marketing,” the opportunity exists for Pharma to partner with patients to engender and create services that leverage the inherent trust of patients as advocates for their health and reinforce empowerment.


Dr. Michelle Tarver, FDA Director of Patient Science & Engagement -“Patients are more empowered than ever before. They are involved in shared decision making. They are able to connect with other patients to share experiences, give advice to one another and provide support” 


C. Meaningful Tools and Support

There exists a golden opportunity for the industry to leverage the power of the patient population to develop trusted resources and tools that are needed, valued, and used. The role of patients in the design of products and services may appear to be fundamental and ubiquitous. However, one speaker relayed a story about a patient-facing medical device that was deemed so intuitive and user-friendly that the manufacturer felt no need to consult patients in the design and development process. Yet, when the device was handed to nurses during a clinical trial, they ended up locking up the device after only a few minutes of use!

The growing role of digital tools and services in the healthcare landscape makes the role of the patient in user experience design much more critical. Success will depend on the ability to perform quality user experience research before and during development and operate with quick iteration cycles capitalizing on user feedback. 


Jodie Gillon of Pfizer recommends performing “the journey mapping and UX research work in every country, because it’s going to be different.”


But when it comes to digital engagement, the industry appears to be falling short. According to findings from a Deloitte report shared by Teva, 38% of Pharma apps are made with the mindset to simply support the launch of products, 30% of apps have never been updated, and another 29% of apps have only been updated once. Those are concerning metrics and demonstrate that the industry is not yet serious about creating lasting digital engagement value despite lots of funding being poured into short-lived initiatives.

Way Forward

At Medullan, we are strong believers in patient-centricity, patient empowerment, and the voice of the patient in every client initiative. We work with our life sciences clients to design and develop digital solutions with comprehensive user experience research, focused on outcomes and goals that are meaningful to patients and designed for scalable, long-term value. Value to patients, providers, and clients. We work with humility, knowing that while we bring the right attitude to the game, it’s a long game, and only the users of our products can tell us when we get it right.

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