Getting Started With Patient-centric Solutions in Your Organization

Patient centricity in the life-sciences industry is growing as more companies include patients and patient groups in the clinical trial process and actively engage them throughout the drug development process. But in order to truly reap the benefits that patient-centric solutions have to offer, the key is to make sure that they aren’t just a one-off exercise, but rather an ongoing partnership that benefits both companies and patients.

As mentioned in the previous blog, incorporating a patient centricity by design framework through the lifecycle of the drug development process has many advantages, from improvements in patient recruitment and retention, better trial outcomes, lower costs, and shorter timelines. But how do companies go about becoming more patient centric?

Japan-based pharmaceutical giant Takeda provides a good example. Starting in 2018, the company required that all R&D employees participate in three patient-themed activities of their choosing, such as volunteering with a patient organization, attending a meeting where patients discussed their medical condition, or reading a book about a patient experience. Jessica Scott, head of Takeda’s R&D patient engagement office, noted that feedback about the program was extremely positive as employees said it increased connection with patients.

That was just the start for Takeda. The following year, all R&D global program study teams in every therapy area were required to conduct a patient engagement activity that supported drug development. The activity needed to involve “a two-way dialogue with patients or care partners to address informational needs of study teams in a respectful and mutually beneficial way and seek to understand the patient experience more deeply,” according to Scott. Unsurprisingly, the interaction significantly improved understanding of unmet patient needs.

In 2020, Takeda is continuing to integrate patient engagement into its R&D programs. By the end of the year, all of its global R&D program teams will need to have a patient engagement plan that explains how they are partnering with patients and the patient community to develop new therapies.

Organizations can best build relationships with patients by having a continuous dialogue with them and recognizing them as “experts who know what is going to make a difference in patients’ and caregivers’ lives,” notes TJ Sharpe, a melanoma survivor and patient advocate. Patient advocacy groups can not only provide companies with experts living with a given condition, they can also provide companies with data they may not know about. For example, many groups maintain registries of patients. “When they find out, they are often astounded because our registry is designed so that we can communicate directly with patients,” adds Emily Kramer-Golinkoff, a cystic fibrosis patient and co-founder of Emily’s Entourage.

An example of how a pharma achieved more extensive engagement with patients is Eli Lilly’s CoLAB program. Rather than just asking a patient advisory board for input, CoLAB had Lilly’s employees work directly with patients and outside researchers to conduct dress rehearsals of trial protocols. The goal: identify potential weakness and seek out areas for improvement. As a result, a large number of practical improvements to several protocols, such as a reduction in invasive procedures, adding more symptom-related secondary endpoints and better packages of drugs used in trials, were implemented.   

The benefits to Lilly from CoLAB are striking. Between 2016—when CoLAB was launched—to 2019, average trial enrollment time declined from four years to three and the gap between first patient dose and product launch went from 10 years to 8.5. The program, now dubbed CoDESIGN has further evolved, incorporating patient perspectives and changes even earlier in the clinical trial design process.  

Read the report from the Economist Intelligence Unit, State of Patient Centricity 2020: Advancing from Patient-first Intentions to True Co-creation, sponsored by Medidata.

Have you registered yet for Medidata NEXT Global 2020? The virtual conference will be held October 27-29, 2020, and the theme is Patient First. Jessica Scott, Emily Kramer-Golinkoff, and Emily Wasik will speak in a keynote panel. Register here.