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.”

 

 

Why are you here?

Topol

Dr. Eric Topol addresses E-health Opening session in Ottawa

Why would you invite a patient or member of the public to a major conference on health information technology (IT)?

Obvious though that answer may be to patient advocates – “nothing about me without me” – it is a question that merits some consideration.

In the not too distant past – say before 2010 – health IT conferences shared the same characteristics as major conferences in any medical specialty. Clinicians, people trying to sell things to clinicians, academics, health care managers and specialized media came together to discuss new research on what would help patients best. Patients sometimes atttended but usually as “Patient with ‘x’ condition” and a useful prop for someone’s research.

As the e-patient movement gained steam, it became clear health IT conference organizers had to at least play lip service to involving patients more. You could do this most easily by inviting an iconic figure such as e-Patient Dave or Regina (‘The Walking Gallery’) Holliday to address your meeting.

But organizers quickly learned that such individuals weren’t prepared to be just tokens. Having been invited in, these and other dedicated patient advocates have changed the very nature of health care debate.

The E-health conference which just wound up its first day of proceedings in Ottawa will have its own patient hero  – double-lung transplant patient Hélène Campbell-  addressing a plenary on the consumerization of e-health tomorrow.

But beyond that what should the E-health organizers be doing?

Inviting patients to oft-arcane discussions of electronic medical record interoperability, SNOMED, or data analytics featuring some truly mind-boggling charts may be the right – albeit cruel thing to do, but who gains from it?

And if you are going to invite a Patient, are you inviting them in their own right or as a spokesperson for a disease advocacy group or a regional constituency? And are you going to pay for their attendance or have them pay their own way?

Obviously patients are a major stakeholder in e-health and must have a voice when major decisions on strategic planning about e-health are taking place. But absent politicians – who are supposed to speak for the people – it is difficult to define who has the authority or right to speak for the patient community on this issue. And if a patient does attend who are they reporting back to and why?

This is not a challenge that is unique to e-health but is true of all general policy discussions concerning health care and the health care system.

Listening to futurist physician Dr. Eric Topol in the plenary presentation to E-health this morning, it is clear that if the democratization of medicine is truly here then we need to find a way to meaningfully involve the public in conferences that have traditionally been the domain of academics, health care providers and vendors.

Maybe e-patients are a legitimate new category of conference delegate at conferences about EMRs, just as they have become in social media conferences. But surely it’s a waste of time and effort unless the information they gain from the presentations and networking translate to informed decision-making in frameworks that actually allow them a voice.