at the center of healthcare innovation is the patient/caregiver
“Passion isn’t enough to make a difference,” said Pat Furlong, president of the Parent Project Muscular Dystrophy (PPMD), regarding the ways patients and caregivers in the rare disease community can impact changes in healthcare. “You must listen, be open and flexible, make decisions, and execute the plan.”
As the founder of PPMD and mother of two sons who lost their battle with Duchenne in their teenage years, Pat speaks from experience. PPMD is the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy. Read more about this organization.
Pat was one of three participants in the Healthcare Businesswomen’s Association’s panel discussion on global healthcare changes and their impact on patient advocates, corporations, and the world. The other two participants were Dr. Freda Lewis-Hall, chief medical officer at Pfizer and HBA’s “Woman of the Year,” and Jeneanne Rae, founder and president of Motiv, experts in design strategy and innovation.
Siren’s president and CEO Wendy White moderated the esteemed panel before an audience of about 700.
The Power of the Patient in Times of Change
The panel was in full agreement that the current health system needs to change. Each woman had her own perspective, but each agreed that at the center of healthcare innovation is the patient/caregiver. When it comes to getting involved in the drug approval process for a rare disease, Pat thinks the government listens to patients and caregivers. “A room full of 10 crying moms is hard to deny,” she explained. And when it comes to challenges of getting treatment paid for, she feels that patients will no longer take “no” for an answer. She also thinks that the cost of not treating patients is much higher than the cost of treating them.
Along those lines, Jeneanne Rae contended that it is time to move from a sickness-based healthcare model to a wellness-based healthcare model.
Freda Lewis-Hall agreed. She said that it is time to innovate the model of innovation in healthcare.
The Biggest Barriers
Government always seems to be the first place to point the finger when it comes to the challenge of making healthcare work. But the panel felt that the people working in government are the ones who most want change in government. Here is what they saw as some of the biggest issues when it comes to the future of healthcare:
1. Advocacy needs to move from disease specific to a holistic look at all rare diseases to raise the collective state of health.
2. We need to reframe the questions we ask patients regarding sharing their information for registries or post-marketing studies. When they are framed to explain that what they are sharing may help others, most people want to opt in.
3. We need to get a handle on electronic medical records. “People really hate change. Docs don’t not like EMRs. They just don’t want to disrupt their offices.”
Overall, changing healthcare comes down to open communication, deeper collaboration, and the courage to change.
Best Sound Bite
Freda quoted her father during the panel and I think it captures the sentiment of the morning: “People don’t change when they see the light. They change when they feel the heat.” We need to make more people feel the heat. That’s the challenge.
Jeneanne recently blogged about this event: read her perspective.