An extraordinary paradox exists in medicine and health care today. On the one hand, as a recent Consumer Reports cover article on cancer tests pointed out “cancer screening remains stuck in a 1960s view of the disease.”[1] This problem of being stuck in our ways is much broader than cancer screening and can certainly be viewed to be operative across the board in health care. On the other hand, we have the newfound potential to obtain unparalleled, critical data and information about each individual. Whether this is via wearable sensors that capture one’s vital signs or sequencing the DNA that comprises one’s genome, we have new tools at our disposal – tools that were not available just a couple of years ago.

The buzzword of “big data” is used to refer to the immense amount of data that is currently being generated throughout the world—more than a zettabyte per year (that is 10,000,000,000,000,000,000,000 bytes). At the same time we can now generate “big data” for each individual and define his or her medical essence. So we have entered an unprecedented time of the information era finally invading and converging with the medical world.

Moreover, this information is flowing in a new way. Until now, doctors had full control of the data and information. We ordered the tests and scans and there was relatively little sharing of the results. Oftentimes patients have to contact a doctor repeatedly to get results of their laboratory tests or procedures.  A marked asymmetry of access to the information has thus been characteristic.

But this is about to change. Now sensor data for key medical metrics like blood pressure, blood glucose, heart rhythm, and what seemingly is an endless list, can all be displayed on one’s cell phone. That data can be automatically processed via software algorithms, whether built into the phone or via cloud computing in our wireless, hyper-connected world, to very useful information.

And now the information is directly available to the patient. A person’s DNA sequence of six billion letters with all of the relevant annotation can be directly visualized on a tablet. These little mobile devices are the property of the individual, as should be the case for his or her data and information. In recent years the term “shared decision” has referred to the ideal scenario when the doctor and patient jointly discuss the choices and make an informed decision together. But now, with the emerging era of “information parity” there is a new “share” decision—will the patient even share the data with his doctor, or just make use of software processing?

In a recent article in The New Yorker, Michael Specter wrote “the era of paternalistic medicine, where the doctor knew best and the patient felt lucky to have him, has ended.”[2] That is indeed true, and will become increasingly apparent in the near future. A new model of medicine is being induced by the digital era and the altered way in which information will be flowing.

For this and many other reasons, Dave deBronkart’s new book is exceptionally timely. Instead of the old way of the authoritative doctor, we need to welcome and nurture a partnership model whereby each patient is fully engaged, informed, activated and intimately involved with his or her medical arc.  Instead of the doctor necessarily having sole access to one’s data, taking on a look of exclusivity, it is time for each patient to take charge, to seize their own data. The term “empowered” doesn’t do the concept justice. The mantra “Nothing about me without me” needs to rule the day.[3] To support this partnership in a world of information parity, the role of doctors can be transformed as the provider of advice, guidance, wisdom, experience, empathy, and communication.

As a survivor of what is usually a rapidly fatal kidney cancer, “e?Patient Dave” is widely considered one of the country’s leading patient activists. His personal experience and willingness to share remarkable insights serves a basis for this guide. This book will unquestionably help many individuals become more active and fully engaged in their health care. Just what the patient ordered!

Eric J. Topol MD
Author, Creative Destruction of Medicine
Professor of Genomics, The Scripps Research Institute
Cardiologist, Scripps Clinic

e-Patient Dave deBronkarts NEW BOOK — Let Patients Help!

“e-Patient Dave” DEBRONKART 
A Voice of Patient Engagement & International Health Policy Adviser