It’s 2020. Are we ready to serve the patients of the future?
Researchers say the first person to live to 150 has already been born and, at first blush, you might think the future of healthcare will be all about technology, life-changing medical innovations, connected devices, artificial intelligence and an avalanche of digital data. Those forces are sure to shape the years to come for patients managing rare and serious diseases.
But the experts we spoke with said something else is happening alongside all that rapidly accelerating technology: Patients are redefining what it means to be a patient and claiming a vastly larger role in the healthcare system. These trends suggest that forward-thinking cardiologist Eric Topol had it right in 2015 when he titled his popular book “The Patient Will See You Now.”
With the future in mind, CSL has deepened its commitment to engage with patients in an immersive, holistic way. From the earliest stage of product development, the goal is to ensure that what matters to patients matters to us, said Chief Medical Officer Charmaine Gittleson. This drive to deliver on our promise has already led to productive meetings with Sjogren's syndrome patients, who shared how this autoimmune disease affects their daily lives and where existing treatments fall short. It has led us to talk with patients in Germany about product packaging in an acknowledgement that patient-centered design can make a difference to the person who’s living with a rare disease.
“Our staff have really valued having that opportunity to understand how the products fit into patients’ lives,” Gittleson said.
Hear from three more leaders who shared insights about fully integrating patients – and their stories – into the process of developing treatments that improve both health and quality of life:
Peers Helping Peers
Patients today have more access to knowledge – and each other – than ever before, but the best is yet to come, said Dr. Ashwin Patel, CEO of InquisitHealth, which helps health plans and health systems improve patient outcomes through peer-to-peer mentoring. He sees a future state when patients will help each other in unprecedented ways.
“Like Lyft or Airbnb, peer-to-peer support in healthcare expands the capacity of an industry (healthcare), and taps unused resources (patients and their lived experiences) to shepherd others experiencing similar health concerns towards success,” Patel recently wrote in “The Transformation of Peer Mentoring in Healthcare.”
Artificial intelligence and “deep learning” will one day efficiently and effectively crunch vast amounts of healthcare data, such as electronic medical records, insurance claims, lab results and data captured from devices, Patel said. What if all that data could match you up with another patient, whose journey has led to positive outcomes, and that person could guide you to those same good results?
“Clearly, each patient’s experience has the potential to help make each subsequent patient’s experience and results better,” Patel said.
Patients as Partners
Patients are leading the way like never before, said Deirdre BeVard, CSL Behring’s Senior Vice President for Research and Development Strategic Operations. No longer are patients viewed as customers who await the launch of your product; they’re integrated partners who are helping you design products and experiences that meet their needs, she said.
“The patient is the expert in their disease,” BeVard said, “Patients are much more in the driver’s seat.”
CSL Behring recently involved sickle cell patients in the design of an augmented reality experience that will explain the clinical trial process for a gene therapy in development. The company is also taking cues from patients about product features that might have been overlooked in the past, BeVard said. For instance, patients want smart devices that effectively deliver medicine and are discrete.
“We’re now looking at things like that,” she said.
Patients as Influencers
The boom in “patient engagement” is no mystery, say leaders at Snow Companies, an agency focused on patient engagement. Patients have emerged as influencers in health care, not unlike physicians who are highly regarded as key opinion leaders (KOLs), said Mike Simone, an Executive Vice President at Snow, which works with biotech companies, including CSL Behring.
Patient opinion leaders (POLs) fill a need, he wrote in a recent article about patient engagement strategies. The most sought after patient influencers have built a reputation in their communities and bring a lot of knowledge and experience.
“POLs are voices of competence on their topic of expertise – the disease they live with or their loved-one lives with,” Simone said. “POLs are panelists or keynote speakers at conferences; they publish opinion-leader pieces; they sit on the board or are otherwise heavily involved with patient advocacy organizations; and they blog and engage their readership on social media.”
The future certainly holds more dazzling technology, but anyone who works with patients should remember what’s truly essential in any relationship, said Brenda Snow, founder and CEO of Snow Companies.
“For most of us, it’s hard to imagine how we’d do anything without a mobile phone and email,” she said. “However, technology is there to improve logistics, not to replace interpersonal interactions. The patient of the future seeks human interaction.”