Digital health: A manifesto for the times

Dave_and_Berci

In 2008, Dr. Gunther Eysenbach, editor of the Journal of Medical Internet Research published a paper on the nature of what he termed Medicine 2.0 – and this paper formed the framework for the first World Congress on Social Media, Mobile Apps, Internet/Web 2.0 held in Toronto.

Eysenbach noted that “recent advances in web technologies and user interfaces have greatly changed the design, appearance, stickiness, and pervasiveness of Web applications, and in many cases transformed the way users interact with them. Perhaps equally importantly, it also has changed the expectations of users.” In addition, he said, these advances have coincided with the development of personal health records “with far-reaching consequences for patient involvement, as the gravity shifts away from health care providers as the sole custodian of medical data.”

Eysenbach talked about five major aspects (ideas, themes) emerging from Web 2.0 in health, health care, medicine, and science, which would outlive the specific tools and services offered: social networking, participation, apomediation, collaboration, and openness.

Among the attendees at the 2008 meeting was a Hungarian medical student Bertalan Meskó (@berci) who was to graduate the following year. A year later at the same conference, also held in Toronto, Dave deBronkart (@ePatientDave) gave his first major presentation in Canada around his rallying cry of “Give me my damn data”.

Fast forward a decade: Dave deBronkart, a stage IV cancer survivor, is probably the most high-profile patient advocate there is and Meskó is a medical futurist speaking to audiences worldwide. Together they have just published what they call a Digital Manifesto with six declarations they believe “are essential for correctly understanding what is and isn’t happening in digital health.”

You can read the manifesto yourself – it’s not long and speaks to much that will resonate with those working in digital health or with patient engagement. It talks about behavior change and educated and informed patients working with health care providers to take control of their own health using the manifest new technologies now available.

What I am struck by are the similarities between the Eysenbach piece and the manifesto – despite the gap of 10 years and the very different tone and purpose intended for the documents.

Both reference the significance of new digital tools and platforms and their importance as enablers of change, or in deBronkart and Meskó’s words: “A future where old hierarchies tumble down, the paternalistic patient-doctor relationship is no longer needed and disruptive technologies enable the democratization of care by democratizing knowledge. A future where all these are in place due to cultural transformation facilitated by disruptive technologies.”

The documents and these past 10 years also represent the dedication and common vision shared by many of those who work with digital health – be they patients, providers or researchers. In addition to Meskó and deBronkart, many of those who spoke or participated in the 2008 and 2009 conferences have remained active in digital health research.

“… we could say that medicine 2.0 is what ehealth was supposed to be all along”, Eysenbach wrote 10 years ago. deBronkart and Meskó say “A manifesto can …kindle new thinking among those who do see the light.”

 

 

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