It’s not that patients haven’t had a voice in the biotech industry. It’s just that they haven’t been heard.

A small but mighty force of patient advocates made that known at the BIO 2016 International Convention, while larger sessions echoed the sentiment that company attitudes are in fact changing.  

Patient-centered biopharma is a prevalent theme that emerged from the June convention. Executives, scientists and patients gathered to discuss how patient voices are redefining “value” within the industry.

The convention’s “Healthcare Disrupted” super session explored the fundamental shift from rewarding volume of sales, procedures performed and patients treated to a focus on improving overall health, patient outcomes and value for the health system.

BIO panelist Doug Biehn summed it up best:

“Your life happens outside of doctor visits and offices,” the chief operating officer of AliveCor said.

In short: It’s not about profits. It’s about understanding the patient journey to deliver better outcomes for end users.

For Biehn, patient-centered means leveraging technology to create solutions that simplify — and improve — patient lives. AliveCor’s wearable, mobile phone-synced devices allow cardiac patients to do their own EKGs. In other tech realms, hemophilia apps are allowing patients to dose themselves. Mobile technology is delivering in-home care for patients who are too high risk to receive treatment in a hospital. And the list of technologies in development grows.

While not without controversy, these apps and devices — when used at the direction of a physician — are making it easier for patients to navigate the day-to-day burden of chronic disease.

“It’s not what the medical dictionary says it is, but what the patient burden is,” said Healthcare Disrupted panelist R. John Glasspool, executive vice president at Baxalta Inc.

Glasspool said drug developers must “understand the burden versus the standard of care, then make sure [that] as we go to develop the clinical plan we understand the patient journey.”

Power to the Patient

No one has explored the shift in health care quite like Jeff Elton and Anne O’Riordan, co-authors of “Healthcare Disrupted: Next Generation Business Models and Strategies.

The two joined Biehn and Glasspool to discuss how patient centricity is changing and challenging historical models and ways of working in the R&D, technological and commercial realms of biotech.   

An excerpt from the book follows the industry’s transition:

“The patient’s power as a consumer is also evolving. One hundred years ago, health care was largely inaccessible to most people even in the wealthiest economies. Sixty years ago, we created mandates and public institutions that ensured some measure of access to the majority of people in the United States and Europe. Over the course of the past 50 to 60 years, health care unions, private employers, states and countries have ensured increasing access.


“Now, we’re entering a time when the priorities of the individual patient with a specific disease or health condition can drive a real determination of value in therapies, interventions and services. The patient is taking on more direct responsibility for outcomes, viewing them from a new vantage point as beneficiary and active customer. Health care is pivoting to the patient.”

Today, patients are taking a bigger role in managing their health — partially because they must cover a larger portion of cost but also because they can, thanks to technology and easier access to care.

“Technology is going to be a great enabler of change,” Glasspool said.

The Future

Powered by digital technology, companies with roots in other industries are crossing into the health care market and disrupting the field as we know it. What will the result be? No one is sure, but the impact is yielding positive results for patients and those who advocate for them.

The critical inflection point in which we find ourselves offers an unprecedented opportunity to redefine and reshape what we consider health care to be, how it functions as a market and what expectations we should have for it,” O’Riordan stated in her conference recap. “Keeping the patient at the center of this redefinition gives us a profound optimism about what these changes can bring in terms of patient and health economic outcomes. We can improve, reinvent, or we can innovate a new way.”

Are you a patient living with a rare or chronic disease? What kind of changes would you like to see in the health care and biotech industries to make day-to-day life easier? Comment below — we’d love to hear from you!

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