Lisa Bance co-wrote this blog post with Kristyn Feldman.shutterstock_519334633.jpg

This is the second post in a four-part series examining patient centricity within R&D.

As pharmaceutical companies aim to make their drug development processes more patient-centric, we’ve noted that a formula for success is starting to emerge, and we’ve packaged that formula into our four pillars of patient centricity in R&D. In our last post, we addressed the first pillar: gaining an understanding of and empathy for patients. In this post, we review the second pillar: uncovering and meeting patients’ needs.

Mounting evidence shows that by more effectively meeting patients’ needs throughout the drug development process, pharmaceutical companies can create products that patients want while also reducing the resources and time required to gain FDA approval. To determine patients’ unmet needs and design effective and innovative ways to address them, companies are gathering meaningful insights directly from patients.

One method for systematically engaging patients is to co-create solutions with patients, caregivers and other clinical trial stakeholders. An example is the Bristol-Myers Squibb (BMS) Universal Patient Language (UPL), which won the 2017 eyeforpharma Award for the most valuable patient initiative. The UPL is a set of guiding principles and a tool library designed to help communicate complex topics to patients, and it was developed to improve the patient trial and treatment experience through more effective communications.

BMS employed a user-centered design approach to create the UPL with the support of Toronto-based design firm Bridgeable, co-creating and validating prototype solutions in collaboration with more than 150 patients and caregivers, 150 healthcare providers, and 15 patient advocacy group representatives, visual communication experts and subject matter experts. “Hear[ing] what patients are telling us really opened a completely new horizon for us on how we can ultimately do our job better because at the end of the day, we’re all patients,” said Elizabeth Turcotte, director of the Patient Hub and the UPL lead at BMS.

To date, the UPL has been used for a variety of BMS communications, including “drug safety information, branded messaging, disease state education, clinical trial recruitment and even call center interactions,” according to a company statement, and it has garnered higher patient engagement than traditional communications. BMS also released open-source tools with the hope that the industry will adopt new communications standards to improve the overall patient experience in clinical trials and in healthcare settings.


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Other pharmaceutical companies are also embracing patient co-creation strategies. When Sheila Babnis served as the global head of strategic innovation at Roche/Genentech, she focused on using patient-centered approaches for product development. In one such initiative, her team used an open innovation platform to engage with patients and other solution seekers and finders, created channels for real-time advice from physicians, and combined these insights from external sources with crowdsourced ideas from within the organization. “We decided to go beyond listening to the voice of patients in our drug development efforts. We decided to co-create,” Babnis said. As a result, the company has shifted its 2020 innovation strategy to focus on patient solutions instead of drug development, reduce the cost of product development by 15%, and incentivize 80% of teams to adopt new approaches to work (focusing on patient centricity, digital efforts, new partnerships, etc.).

Patients, caregivers and advocacy groups can provide innovative and unexpected solutions to addressing unmet needs in drug development. For example, impassioned, informed and connected patients have been known to organize their own patient-initiated trials in amyotrophic lateral sclerosis, alkaptonuria and other diseases. And investigators at the University of Cambridge have developed a hub where patients can submit study ideas to potentially be turned into clinical trials.

Pharmaceutical companies are beginning to see the value of better understanding patient needs and are shifting the drug development paradigm in response. The discovery of patient needs—aided by co-creation and other collaborative communications strategies—can lead to improved clinical trials and a better patient treatment experience overall.

Stay tuned for the next installment of this blog series, in which we’ll outline the third pillar of patient centricity within R&D. Did you miss the first post? Read it here.

Topics: Pharma, Pharma Industry, Patient Engagement, drug development, co-creation, R&D, patient centricity, patient centricity in R&D, meet patient needs, collaborative communication