The Power of Elevating Patient Voices in Pharma

In 2016, the Food and Drug Administration held a public meeting for psoriasis patients and their caregivers.Their intention was to gain insights into the effects and experience of the disease. More specifically, the FDA wanted to host an open discussion about current therapy options and the varied realities of the patients and caregivers who were impacted by this disease. All of the most important stakeholders were present. In addition to patients and caregivers, clinicians and researchers attended. The public meeting provided an opportunity to hear, firsthand, how psoriasis impacted the daily life of those who were affected by it.

Such an interactive approach was a fresh first step toward hearing and understanding the patient’s voice and the realities that inform their beliefs, behaviors, and experiences. This initiative, borne of the 21st Century Cures Act, was part of the FDA’s ongoing commitment to actively seek out patient perspectives about their condition, burden of disease, burden of treatment and available therapies.

The focus of the meeting was on the symptoms of psoriasis and the impact of the disease, and no topic was off-limits. Patients spoke about the emotional toll of living with daily pain and active flare-ups. They illuminated the embarrassment and social discrimination they endure. And they shared how the disease limits an active lifestyle. Psoriasis is hereditary, so patients and family members even shared the impact the disease has had on multiple generations.

In this meeting, patients discussed the routes of administration for their prescription and nonprescription medicines, the success or failure of various experimental therapies, and their struggle for clarity from providers and the hospitals, health networks, and pharmaceutical brands that support them. Participants also explored pediatric psoriasis, a subcategory of which clinicians and researchers know very little. The spectrum of discussion and the exchange of knowledge made this a valuable human research experiment.

Why is this important?

The 2012 PDFA V reauthorization has played a critical role in making more life-saving medicines available to patients in a timely manner—and with a strong focus on understanding the patient voice. Notably, PDFA V called for upgrading benefit/risks assessments of new medicines as well as a call for more patient perspectives in the development and subsequent review process. Add to that the 21st Century Cures Act and the stage is set for pharmaceutical companies to approach product development—as well as subsequent post-regulatory activities—with a strong focus on patient voice.

Pulling the patient voice into the conversation has never been more important. Virtually every drug company on the planet knows this and has prioritized patient understanding in their drug development, branding, and patient engagement strategies.

How can LIFT help?

We can facilitate insights gathering that seeks to listen to and understand the patient and other key stakeholders who will inform the success of your asset. We use empirical data collection methods like observation, ethnography, in-depth interviewing, probes, and other forms of qualitative insights gathering tactics. We can help you map and understand the dimensions of emotional truth that inform stakeholder reality and behavior. We can help you take what you learn and champion thematic opportunities to elevate the patient voice in commercialization and post marketing stages. Using our Insights Canvas? we will show you how to identify intersections of common human truth among various stakeholders cohorts—and leverage those intersections to help your brands succeed.

Why partner with LIFT?

• To cultivate important stakeholder understanding that champions the patient voice and supports patient outreach, education, and advocacy.
• To strengthen the commercialization landscape, including regulatory packaging, product launch, post marketing activities, and patient advocacy & education.
• To provide clinicians and medical staff with training that champions the biopsychosocial model of care that is increasingly prominent in the work we do.
• To empower clinical professionals, caregivers, and (most importantly) patients in understanding and learning how to purposefully manage heir condition beyond diagnosis.
• To provide value to the the very humans you rely on and who are the lifeline of your brands.

When we understand the patient voice, everyone wins.

Patients do the things they do for a reason. And, understanding why they do the things they do helps us and our brands succeed in market. LIFT can help you uncover those reasons and use what you learn to empower better outcomes.

You cannot change behavior or empower patients to a higher level of personal competency without first understanding them. So, for the pharmaceutical companies and healthcare providers in attendance at that 2017 FDA gathering, the information shared was more important than science and technology—it was expert guidance that every pharma brand should seek out and use every day.

Without patient centricity and understanding as our bedrock we fall flat and educational messaging becomes ineffective. The patient story is powerful and compelling. When we take the time to listen, it can be life-changing.