{"id":35247,"date":"2015-09-17T13:53:16","date_gmt":"2015-09-17T12:53:16","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=35247"},"modified":"2015-09-17T13:53:16","modified_gmt":"2015-09-17T12:53:16","slug":"e-patient-dave-debronkart-my-health-upgraded-is-a-clear-vision-from-a-young-futurist","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2015\/09\/17\/e-patient-dave-debronkart-my-health-upgraded-is-a-clear-vision-from-a-young-futurist\/","title":{"rendered":"“e-Patient Dave” deBronkart: “My Health: Upgraded” is a clear vision from a young futurist"},"content":{"rendered":"

\"dave_debronkart\"<\/a>In my work to understand how medicine saved me from Stage IV renal cell carcinoma in 2007, yet so often falls catastrophically short, I’ve looked for causes of both success and shortfall. More than anything, I’ve seen that “the progress of progress” depends on whether we correctly see, or fail to see, the latest and most important new patterns that alter what’s possible and what direction we should head in.<\/p>\n

The job of a futurist like \u201cBerci\u201d Mesk\u00f3 is to see what\u2019s newly possible that will make an important difference, then to point out what we should do about it. That\u2019s what his new book My Health: Upgraded<\/a><\/em> is about, and to discuss its importance I need to step back a generation.<\/p>\n

My own area of study is the e-patient movement (“empowered, engaged, equipped, enabled”), which was pioneered in the 1990s by Tom Ferguson, a true futurist whose vision has panned out. In 1994 just before web browsers arrived Tom was the medical editor of the Millennium Whole Earth Catalog<\/a><\/em>; as the web emerged, just two years later he authored the breakthrough book Health Onlin<\/em>e<\/a>, a stunning early how-to that echoes today (twenty years later) as clearly spot-on. That is a futurist who understands how a profound change – the internet, in his case – makes a whole new world possible, even when the change hasn’t fully materialized.<\/p>\n

Tom\u2019s vision \u2013 and his vision of how “information age medicine” (his 1994 term) would turn healthcare on its head \u2013 is brilliantly illustrated in these amazing slides<\/a> that he published in 1995, months after the Mozilla browser arrived. By 2000 he described, in The BMJ<\/em><\/a>, one of the first tangible ways in which \u201cinformation-age healthcare\u201d had given birth to a new mechanism of undeniable value:<\/p>\n

\u201cClinicians must keep up to date on a wide variety of medical conditions while seeing dozens of patients a day. Patient-helpers . . . will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.<\/em>\u201d<\/p>\n

Four years later \u2013 one decade after Mozilla \u2013 he articulated it, for the first time<\/a>, in a way that hinted at the failure of our then current conceptions to understand this arriving future: \u201cThe emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-internet medical constructs.\u201d<\/p>\n

What Ferguson saw was the radical shift in information flow around us – the new pathways that enabled unprecedented citizen knowledge, which didn\u2019t make people doctors, but surely altered what they could know.<\/p>\n

Now, My Health: Upgraded<\/em> does the same for the radical shift in information that lives on us<\/em> and in us<\/em>, through sensors of all sorts, and information that\u2019s computed around and on us, by apps and devices that process that data to let us understand our status. The insights that ensue into fundamental change are comparable to Ferguson’s in impact about the arriving future.<\/p>\n

Part one is about that technology, but also importantly about the sociological and cultural implications of patients having unprecedented knowledge \u2013 sometimes \u2013 while other patients don\u2019t. It will surely take a generation or more before that aspect settles out to an evolved new reality, and in the meantime, the practice of medicine will be complicated in new ways, which we must understand or be perplexed.<\/p>\n

Part two explores a dozen questions that are essential to help us start thinking out what we should do about it, as citizens and as care providers; without these questions we will be left amazed but disoriented.<\/p>\n

Part three brings the book\u2019s title home: \u201cMy Health\u201d \u2013 the impact of all this on the individual in his or her home, or as caregiver for a relative or friend.<\/p>\n

Each of these parts profoundly affects the future of the patient-clinician relationship. To understand this, ask why you have consulted clinicians in the past. The reasons are many, and they\u2019re not going away: personally, no matter how much data I have around me, I have no intention of ever becoming an oncologist, a surgeon, or even a master of primary care. But a diabetic no longer needs to see a doctor to know their numbers, a woman no longer needs to see a doctor to know if she\u2019s pregnant, and so on. I\u2019m no doctor but I certainly intend to do what I can to monitor my health.<\/p>\n

What My Health: Upgraded<\/em> spells out is that \u201cto do what I can\u201d is changing right now, every bit as radically as the internet blew through information walls 20 years ago.<\/p>\n

That doesn\u2019t mean everything will be easy or automatic. It only means new things are possible. But that\u2019s important: as I said at the top, “the progress of progress” depends on whether we correctly see, or fail to see, the latest and most important new knowledge that alters what’s possible and what direction we should head.<\/p>\n

You must<\/em> read the chapter \u201cWhy are futurists usually wrong about healthcare?\u201d which goes into depth on what a real futurist does vs what popular media like Time<\/em> promote. A real futurist does what Ferguson and Berci do \u2013 understand the deep, underlying, fundamental changes that make new things possible. These insights are not necessarily sexy enough for mainstream coverage, but they\u2019re where the answers lie that must be understood by those responsible for planning ahead.<\/p>\n

Much is at stake here, for clinicians as well as citizen-patients: there\u2019s a real cost to having your head so stuck in your past that you can\u2019t see the arriving future. For instance, in 2015 the UK\u2019s National Health Service apologised for its role in a 19-year-old\u2019s death after they\u2019d told her \u201cStop googling,\u201d and in 2014 the Belgian government decided to spend taxpayer money on a Google Adwords campaign telling citizens \u201cDon\u2019t google it<\/a>,\u201d linking to big expensive ad agency videos here<\/a> and here<\/a> (more taxpayer money) that portray googlers not as engaged, thinking citizens, but as bumbling frightened fools.<\/p>\n

Such \u201cThe Empire Strikes Back\u201d acts are the bellows of dying dinosaurs, well-intentioned but obsolete. They\u2019re not just ignorant of Mesk\u00f3\u2019s world; they\u2019re still ignorant of what Ferguson saw a generation ago. Change takes time, and the cost of being late can be high.<\/p>\n

Parts of Ferguson vision continue to materialise today, and those are the parts My Health: Upgraded<\/em> steps forward to explore. As a 65 year old who was saved by the best of medicine and has learned a lot since then, I\u2019m thrilled at the idea of being alive another twenty years from now, in 2035, to see what the next wave will look like. I find reason to believe we\u2019ll see Mesk\u00f3 was as right as Ferguson.<\/p>\n

\u201ce-Patient Dave\u201d deBronkart<\/strong> is a stage IV kidney cancer survivor and advocate for \u201cparticipatory medicine,\u201d in which patients are active partners with the medical system. He will be visiting professor at the Mayo Clinic in Minnesota, USA, in March.<\/em><\/p>\n

Competing interests:<\/strong> See\u00a0Dave deBronkart’s patient panel profile page for a full declaration of competing interests.\u00a0<\/a><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

In my work to understand how medicine saved me from Stage IV renal cell carcinoma in 2007, yet so often falls catastrophically short, I’ve looked for causes of both success […]<\/p>\n

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