Transforming the PAH Customer Experience through Dedicated and Personalized Educational Support Drives Adherence

Inizio Engage is the recipient of a 2024 PM360 Trailblazer silver award in the category of Best Persistence/Adherence Program for a rare disease patient and caregiver engagement program.

Our client turned to Inizio Engage Patient Solutions to develop a patient support program to improve adherence and persistence within the rare disease of Pulmonary Arterial Hypertension (PAH). PAH is a rare and fatal disease that can leave one feeling overwhelmed, isolated and struggling to cope with daily living. Our client was experiencing nearly 40% of patients dropping-off of their prescribed treatment in the first 12 months. The goal was to meet patients where they were during the key moments that matter and partner with them at every step of their journey. Putting patients at the center of our work, we launched a one-on-one patient support program which broke the mold for our client – one that truly understands the patient and tailors the experience to their educational needs.

Once the prescribing decision has been made and patients provide an opt-in, the program is a suite of patient support resources that includes personalized, one-on-one educational support to help patients start and stay on their prescribed PAH medications. Tools and resources are adapted to fit patients’ specific questions, needs, and interests.

• Meeting patients where they are. Newly diagnosed patients are often overwhelmed and may need additional time to review their questions and concerns. With a dedicated PAH Clinical Educator, they have a chance to review again any disease state and product education on which they would like to get additional clarity.
• Support that matters. As patients engage in the program, they receive educational, practical, and emotional support resources as well as knowledge of new digital PAH tools that help drive better health outcomes.
• Se Habla Español. The program also features a suite of Spanish resources, including a dedicated team of bilingual Clinical Educators that engage one-on-one with Spanish speaking patients and their loved ones.
• Day or night, we are here. The program delivers a customized and educational destination for PAH patients yearning to learn more – anytime and on any device.

“I’m glad there’s a program like this to help patients because things can be a bit overwhelming with the sudden onset of PAH. It’s nice to know there’s help for patients like me.” – Patient

Fast optimization at scale drives meaningful impact

For its launch, the team built the program directly with PAH patients and their care partners. The team used market research and co-creation techniques to get direct patient input on the value proposition, role of the companion, call cadence, call topics, program materials, and pillars of the one-on-one human relationship. The feedback was incorporated in real time through an Alpha Test, a simulated environment to run the program with real patients prior to launch.

To continue its success, the team has evolved the program with speed through agile methodologies, launching new optimizations every 90 days based on patient and customer feedback, crowdsourcing ideas with patient advocates and the Clinical Educators, and training to ensure the vision and key experience principles pull through. The cross disciplinary teams from our client and Inizio Engage continued to meet with every Clinical Educator joining the team, ensuring key understanding and engagement for the overall program vision, participating in empathy training and booster sessions, while leveling up call calibration scoring to include higher-level empathy traits key to ensuring every call delivers an exceptional educational experience.

“I never knew companies had such programs. [ it makes me feel heard].” – Patient.

Impact that matters.

The PAH Adherence program results speak for themselves:

• 88% of patients on prescribed therapy started therapy vs. 72% of patients not in program.
• 85% of patients on prescribed therapy stayed on therapy vs. 79% of patients not in program.
• Patient engagement levels are 27% higher than industry benchmark.
• 93% of patients are scheduling follow up calls and continuing with the program vs. benchmark of 54%.
• 98% have found the information provided by the program to be helpful.
• 97% felt heard and supported during their Clinical Educator calls.

“You have been a godsend. Because you have helped me through my fear, through my anger, through my Dx till I got out on the other side. You were the only person who has been there for me.”- Patient.