How Well Do You Really Know Your Patients?

Contributed by:

Linda Newberry-Ferguson, Senior VP, Clinical Navigation, Dohmen Life Science Services

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Global Genes reports that therapy adherence in the rare disease space can vary from only 58% to 65%, a troubling statistic for our industry, and most importantly, the patients we serve. Manufacturers must be wondering, how well do we really know our patients and what they need?

Many orphan drug manufacturers are recognizing that the traditional model for commercialization and drug delivery doesn’t serve small patient populations well. Patients’ needs slip through the cracks as their therapies typically flow through a half-dozen disjointed, uncoordinated middlemen, including wholesalers, distributors, hubs, specialty pharmacies, and healthcare providers, before they make it to a patient.

A Wrap-Around Patient-Service Model

Outsourcing strategies are now evolving to better address manufacturer, healthcare provider, caregiver and patient needs, spanning the development pathway to commercialization cycle.  Many life-science companies recognize that building their own complex commercialization structure, or working with multiple vendors to create one, is an unnecessary redundancy that adds cost to healthcare delivery and diffuses their attention.

A unique wrap-around patient-service model focuses on reducing the burden of disease and increasing therapy adherence through coordinated care, patient education, and comprehensive support delivered by a single rare disease-focused business partner. The model is built from a deep understanding of each disease state that goes beyond traditional medical care and logistics, such as shipping products or collecting reimbursements.

“We start the design of each therapy program by mapping the patient and caregiver journey,” says Linda Newberry-Ferguson, Senior Vice President, Clinical Navigation, Dohmen Life Science Services (DLSS). “It’s a unique approach to patient and caregiver research that considers the emotional, treatment, and physical needs. These insights inform the development of a customized rare disease patient support program which extends well beyond onboarding patients to therapy.”

Precision Medicine Needs Precise Patient Understanding

Even though rare patients desperately need customized treatment, they have an equally urgent need for customized education, access, and support. Meeting those needs, while immersing patients in a positive experience with the brand across all touch points, is the most direct route to lifelong adherence and loyalty.

“Our understanding of the patient’s lived experience helps us refine our program and support our clients’ patients with the right amount of education, engagement, and encouragement depending on where they are in their journey. And we do it on a schedule and in a communication channel that works best for each patient,” adds Newberry-Ferguson.

Step One: Build Your Patient Relationships

Emotional bonds and trusted relationships between manufacturers and their patients are built over time, sometimes starting as early as clinical trials. And it doesn’t end when the prescription is written. There is continuous value in fine-tuning the experience with data collected at each step of the patient’s journey, combined with the patient’s own feedback garnered through a patient services program that is comprehensive yet easy to use.

Step Two: Create Stronger, Life-Long Relationships

Multiple touchpoints can create multiple headaches. Rare disease patients and caregivers lead complicated lives and face enormous medical, financial, and social challenges, along with insurance hurdles and complex routes of administration. By funneling all interactions through one point of contact, you can create a single brand experience that reflects positively on your company and therapy, strengthening your relationships with patients, caregivers, and healthcare providers.

Step Three: Use Data to Improve Patient Outcomes Over Time

An integrated outsourcing model delivers the data and insights needed, complemented by a feedback loop from your patients, to improve your program offerings and alert you to adherence issues before patients become non-compliant. Simplifying and streamlining the patient experience is not only better for patients, but a single outsource partner will get you clearer data and new insights that will lead to better patient outcomes over time.

As Newberry-Ferguson shares, “By developing a personal relationship with our clients’ patients and empathizing with unique challenges and concerns, we can target interventions and support resources to ensure ongoing adherence and ultimately, help create a better quality of life.” (PV)


Dohmen Life Science Services, a member of the Dohmen family of companies, provides intelligent outsourcing to biopharma and rare disease companies. With the broadest suite of services in the industry, DLSS has helped more than 600 companies simplify and strengthen their patient relationships while growing their business and realizing their vision. Whether it’s navigating regulatory requirements during development, commercializing products, managing daily operations or providing patient-centric care for the rare disease community, DLSS helps our clients advance with speed, scale and certainty.
For more information, visit www.dlss.com.

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