The Medical Futurist - Grand Challenges

Put Patients In The Center Of Healthcare

Patients must become experts on their own health so they can be involved in decisions about their health, while also taking part in designing healthcare.

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"Gimme my Damn Data": Medicine 2.0 Opening Keynote by ePatient Dave

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The Society of Participatory Medicine


The Digital Doctor

The Patient Will See
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The Story of Digital Health (Part 1)

Disruptive technologies are leading to huge structural changes in the traditional healthcare system. For thousands of years, only physicians have been able to acquire and access medical data and make medical decisions. This “ivory tower” of medicine was built on the firm knowledge that physicians know best what’s good for the patient, and can’t benefit from patient input. Patients were just the subjects of healthcare, not partners. Today, health innovation allows patients almost the same opportunities as physicians, but they’re not yet equipped to use it responsibly. For the sake of both, physicians must learn to work with patients and treat them as equal partners, while patients must assume more responsibility for their health. This new equilibrium will lead to improved effectiveness and motivation for patients to better managing of their condition.

E-patient Dave and his doctor
E-patient Dave with this doctor, Dr. Danny Sands.

“It’s time for a social movement. We have enough evidence now. It’s time to get in action to create change.” E-Patient Dave deBronkart

Access to health data has leveled the playing field, arming patients to make informed decisions about their health. More health information is available via Google and crowdsourcing through social media communities than even the most trained physicians possess. Thanks to direct to consumer genomics and sophisticated health trackers, patients can acquire more detailed data than their clinicians. Patients are finding new ways to take advantage of this data. Doug Kanter measured every aspect of his life relevant to his diabetes. He realized that his average blood sugar levels became lower due to self-management. Other patients will follow, and they are sure to get more encouragement. Studies show that involving patients in medical decisions brings greater clinical benefits and decreases costs – something that regulators looking to keep runaway healthcare costs in check are sure to pick up on.

The Databetes project.
Doug Kanter recorded vital signs and data related to his diabetes management for over a year in order to improve his condition.


But before patients can take control, medicine and health technology need to accommodate them. Current digital health technology like health trackers provides raw data that needs the expertise of trained physicians to be actionable. Instead of raw data, innovators should be focusing on helping patients make decisions about lifestyle. Even more important is that though vast amounts of information are available online, much of it is biased or faulty. Patients searching online can as easily stumble upon pseudo-scientific rambling as find helpful resources. Without proper training, it’s often hard to distinguish between the two. Finally, most healthcare processes were designed decades ago, “suffering” patients instead of focusing on them. Involving patients in designing the delivery of care was not even considered until Dr. Tom Ferguson published his e-patient white paper in the early 2000s.

“Patients possess a body of knowledge about themselves that we can never hope to master, and we have a body of knowledge about medicine that they can never hope to master. Our job is to bring these two groups together so we can serve each other well.” 

― Robert Wachter, The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age

Patients also need to change before they can take charge of their health. Patients need to become experts on their own health by being proactive. They need to find digital channels and methods to keep themselves up to date. Online and in-person patient communities offer tremendous support, and a chance to “crowdsource” many health questions. Most importantly, patients need to learn to question medical advice, especially from unreliable sources, distinguishing between biased and reliable medical information. They need to demand personalized care and a say in medical decisions.

Painted jackets about healthcare and e-patients.
The Walking Gallery of Healthcare (Regina Holiday)

The future of care will put empowered patients in the center, who will be ready to take charge of their health. To make this a reality, every healthcare stakeholder needs to do its part. Physicians must be ready to work with patients as equal partners. This will lead to both for increased outcomes, more quality time spent with patients and higher job satisfaction, preventing burnout.

  • Patients must step up and take charge of their health. If they demand to have their say in medical decisions while seeking out reliable medical information and becoming experts on their care, doctors will be happy to give them a seat at the table. Building patient communities will further help organize support and channel information to each and every patient.
  • Digital health companies must support patient decisions with technology. Moving away from raw measurements and data will lead to improved customer satisfaction and retention, not to mention lasting lifestyle change.
  • Regulators and administrators must start designing care with patients, for patients. The Health Design movement has proved that patient centric design results in increased satisfaction and benefits. What’s more, patient advisory boards at hospitals, pharma companies and even the FDA show that patients have vital insights into healthcare processes that can fuel innovation and business performance as well.

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