Capturing a Comprehensive Patient Voice

Capturing a Comprehensive Patient Voice

Ensuring care access and treatment options require patient advocates to capture and maintain the patient voice. Part of this representation is putting the patient at the center of business activities and decisions. From executive stakeholders to early product development, incorporating the patient perspective can enable companies to provide better treatment options while reducing the burden of treatment.

To gain a deeper insight into patient-centric advocacy, we turned to Jodi Wolff. Wolff, Director of Patient Advocacy at Santhera Pharmaceuticals, is a key speaker at this year’s Strengthening Patient Advocacy Relations Conference. Wolff explained that supporting patients is a multi-faceted role:

Including the Patient in Early Product Development

Involving the patient early in product development, says Wolff, enables companies to work with patients as new needs or challenges arise. Wolff explains, “It is never too early to talk with advocacy groups about your work, even if it is pre-clinical. You want to ensure that you are investing your time and resources into something the community values and needs.”

Supporting this development also includes supporting patient-focused legislation. By working with the patient community, Wolff and her team are able to support the passage and authorization of critical bills, “We have been fortunate in the muscular dystrophy community to be the recipients of years of work by advocacy groups to get the MD CARE Act passed and reauthorized, which has increased greatly the infrastructure necessary to support rare disease therapy development.”


Developing Successful Medical Products

Accessing successful medical products can be a continual challenge for patients. Partnerships offer Wolff and her team the ability to discover exactly which kinds of treatment may be necessary or desirable for patients, “Lucky for us, we had a patient advocacy partner – Parent Project Muscular Dystrophy (PPMD) – who had been engaging in patient preference studies.  So we were able to tap into their expertise and they conducted a study specifically asking caregivers, teens, and men with Duchenne muscular dystrophy what their preferences were in therapeutic development and the symptoms that were important to them..”

This information helped Wolff and her team know that they were on the right track. By also partnering with advocacy groups and connecting to patient communities, her team is able see exactly how the disease progression intimately impacts patients. This helps advocates understand how the burden of care can be eased for the patients and their caretakers.

Supporting Patients on the Executive Level

Communicating and understanding the patient perspective is central to supporting patient goals and treatment success. Adequately representing the patient enables advocates to express this perspective in an internal and external stakeholder environment.

To capture the patient voice, patient investment needs to be an executive mindset. Wolff explains, “I think that patient advocacy must be a core value of the company and often that starts at the top. I’ve been lucky to work for a CEO, Thomas Meier, who was deeply committed to the patient community from the very start and brought me on early in our company’s growth.”

Meeting Patient Expectations

When patient advocacy is a core company belief, surrounding your decisions with patient-minded values helps to capture a comprehensive patient voice, “I believe that as a company and patient advocate you should constantly immerse yourself in the patient community, and make concerted attempts to understand not just the dominant voices and loudest voices in the community but those groups within the community who are underrepresented.”

Different groups in the patient community will have differing expectations of patient advocacy and advocates. Understanding basic expectations is one way to prepare yourself as an advocate and your company to represent these needs. Wolff wants patients to know that advocates are constantly working to improve their care, “I want families to expect that we are working hard to find treatments for their children and that as a patient advocate I am always guided by doing what is best for the patient community.”

To meet these expectations, Wolff recommends communication, engagement, and inclusion, “Seeing the patient community as partners in the [treatment development] process, having positions devoted to patient advocacy early in your drug development program and constantly engaging with the community.”


Successful patient advocacy relies on patient-focused actions and decisions. Wolff and the Santhera team immerse themselves in the patient community to ensure that their work is always incorporating the patient perspective and addressing the needs of patients. To hear more from Wolff, and to learn more about advocacy strategies for patient-centric treatment, register for the 6th Annual Strengthening Patient Advocacy Relations Conference, July 25-26 in Baltimore, MD.