Alpha Geeks in Health Care

Here’s how tech guru Tim O’Reilly describes his work:

So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others.

In the computer industry, these are the folks I affectionately call “the alpha geeks”, the hackers who have such mastery of their tools that they “roll their own” when existing products don’t give them what they need.

Watching the alpha geeks — people whom more traditional marketing analysts might call “lead users” — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.

Who are the alpha geeks in health care?

Off the top of my head, I’d name a lot of the people who founded this site or founded organizations we talk about all the time.

Thinking more deeply, though, I realized that there are multiple categories: patients, caregivers, clinicians, pharma, public health workers, librarians, government (comments please: other categories?)

Re-reading Tim’s description, especially the line about how alpha geeks “live in a world of their own,”¬† I thought about the people I’ve met who most closely fit that description, who make a way out of no way — people living with rare disease. They are in the crucible. They “roll their own” by creating communities of health information exchange where none had existed.

Who would you call an alpha geek? What can the clinician alpha geeks learn from the patient alpha geeks? Is there a mechanism for that information exchange? What can the pharma alpha geeks learn from the public health alpha geeks? Is there a way to connect the disparate tribes? Or maybe you know about connections that I haven’t seen yet, in which case, do tell!

30 thoughts on “Alpha Geeks in Health Care

  1. How about actual geeks like

    * Engineers… who often drive standards + tech vision (hopefully sharp system engineers who can discern good code/schema from mediocre),
    * Software developers… the ladies and gents who actually Make stuff and often drag institutions and policy into the future with their desirement to evolve and improve services
    and
    * Designers… product and software designers who grok less is more and let data scream, all while understanding the business + technical + design constraints.

  2. And I’ll go ahead and nominate all the people (OK, mostly moms) who contributed to this book:

    Uncommon Challenges; Shared Journeys: Stories of Love, Hope, and Community by Rare Disease Caregivers
    http://www.amazon.com/Uncommon-Challenges-Shared-Journeys-Caregivers/dp/0615445551

    They may not be writing code, but they’re alpha geeks in the sense that they don’t care what other people think or what’s been done before or what’s supposedly impossible.

  3. Woah, I completely misunderstood “alpha.” Might be worth an explanatory note, in case others are as off-clue as me.

    At first read, I thought this was alpha as in “alpha dog” – dominant, running the show, bossing others around. Now I see it’s “alpha” as in “alpha testers,” pre-beta-testers. That’s what Geoffrey Moore referred to as early adopters, right? Tim’s description sounds like the sort of person I was in graphic arts systems, who will take 85% of a real solution and glue it together into something that gets the job done. Not for the faint of heart, but a thrill for the geek!

    Or, putting it differently, they might be called “prototype workflow builders,” which hints at O’Reilly’s point about suggesting possibilities, next steps, etc.

    Or lab-bench rats. Or, in the original (good) sense of the word, hackers. In the 1950s the MIT Model Railroad Club folks rigged up a remote sensor to the distant Coke machine to let them know when it was empty so they wouldn’t waste a trip. Sixty years later Virgin America’s seatback food ordering screens have real-time inventory, so you don’t order something that they’re out of.

    And that takes us SQUARELY to what “alpha-building health IT geeks” need: data.

    SPM member Hugo Campos sure wants to be one, but the maker of his implantable cardiac defibrillator won’t let him have his data. And today on Twitter, @BernardF (Bernard Farrell, diabetic and UI architect) responded to my “Let Patients Help” video by tweeting:

    “I say #GiveMeMyDamnData #diabetes is all about data, and we can’t get it out of our meters, pumps, CGMs”

    The fabulous Manny Hernandez of the Diabetes Hands Foundation (@AskManny) explained, “CGM = Continuous Glucose Monitor (monitors glucose levels in interstitial fluid every 5 min)”

    Hm, devices with captive data? I tweeted: “People talk about jailbreaking their iPhone – how about jailbreaking your CGM? (Whose data is it, anyway??)”

    And presto, we’re right back at the theme song sung over and over by the CTO of Health & Human Services, Todd Park: “Data Liberaci√≥n!” Check one of his video interviews.

  4. This is tricky stuff and I asked myself the same question about health when he presented at SXSW. While we are replete with early adopters, messengers, revolutionaries, disruptors and passionate messengers, the health alpha geeks as described by O’Reilly may be harder to come by IMHO. I guess I would see health alphas as those who spontaneously create disruptive solutions that scale and change health. But perhaps it needs to be better defined. The devil’s in the details.

    The guys at MIT media lab come to mind for sure.

    Outside of the bubble we all have a touch of alpha. Perhaps its defined by our frame of reference.

    • Bryan,

      Thanks so much for affirming what I felt too, the first time I heard Tim describe alpha geeks — that the definition may be in the eye of the beholder. That’s why I checked myself before writing too much about what I thought, since my focus is so much about consumers, as opposed to clinicians, for example.

      I like your idea that health alphas are “those who spontaneously create disruptive solutions that scale and change health.” Certainly a tall order in our vast and klugey health care system, but possible.

      I also like Dave’s idea of watching how people outside the health insurance system leverage tools.

      That gets to an idea I was just discussing with Robyn Whittaker, a wicked smart mobile health researcher from NZ: is mobile health an extension of the current system or will it transform the system? That is, will people with lower economic resources (but higher levels of mobile access than before) be able to substantially improve their health outcomes, thanks to new/increased access to information, services, etc.? Or will the tools fall short and leave them outside, once again?

      Which brings me to a fundamental question: are alpha geeks exclusively developers (people who design and make stuff, often out of whole cloth)? Or is there a category of alpha geeks who are MacGyver-type users (who beg, borrow, steal, stitch, and patch their way to a solution)? I don’t think there’s a higher order of MacGyver than a rare-disease caregiver mom, for example. But again, that’s my bias as someone who spends time thinking about that aspect of health care.

  5. The best alpha geeks are cross-pollinators who float from one community to the next, sharing ideas they have collected along the way. The cross–hatching taking place among the #hcsm, #hcsmca, #hcsmlat, #hcsmvac, and other variant communities is a marvel to behold.

    By way of example, in a recent chat in the #hcsmca (health care social media – Canada), a brainstorming session concerning outreach to youth on communicable diseases arose at the same time there was a subsidiary chat on QR codes. Then one of the participants remembered seeing how QR codes could become temporary tattoos, suggesting a new idea for promoting disease awareness. This is just one example of collaborative serendipity that is happening among the alpha geek crowd online. What an exciting time this is to live in!

  6. There are also entire communities of care that are already creating and implementing the next level of health care. My favorite is my alma matter Group Health Cooperative – yes a co-op that is owned by its 620,000 members and where the members design the system where when we implemented the EHR (in 2005) we gave the patients access to write to their charts BEFORE the doctors (they could only view it)

    We have already been living in a world for the past decade where we have had email access to our docs, the ability to view our records, and where now 30% of visits are done remotely via email or telephone encounters.

    GHC have already implemented the medical home model and is be default an ACO with 30 minute visits with providers and smaller provider panels. GHC even builds mock-ups of exam rooms and clinics and then brings in actual patients and providers to tell them how to best meet their needs. By looking at the patients work flows they are now eliminating waiting rooms – why do you need to wait for a room in an efficient system? and use the space for patient care.

    Group Health Co-op is a living crucible of praxis where they learn by doing instead of simply studying a theory. With some of the highest quality outcomes and the only local provider that actually cut its costs for those on Medicare it is a model of what is possible.

    I love Carmen’s comments. There are many many people like me work across silos and even industries but online it isn’t always apparent.. In my life I am heavily involved with health informatics @cascadia, Seattle social media @NWAngel, startup weekend, sustainable Wallingford and grass roots engagement via numerous political campaigns.

    Rather then defining myself as an Alpha Geek most people view me as a connector and idea mid-wife that helps create the space for new ideas to not only blossom but live

    • Sherry, you point out something important — the label of Alpha Geek might not fit you, but that doesn’t mean you are not a change agent.

      I love your Group Health example. I still remember the first time Ted Eytan described it in detail, years ago. I almost didn’t believe him :)

      • Thanks Susannah – I guess we are Beta Testers here in the PNW.. I like to think of myself as an eHealth midwife instead of a geek though.

        Many people think it was as a direct result of seeing a patient centered system like GHC in action that I became inoculated as an “eHealth” and “Health IT” advocate but it was because when I was 14 I was first evaluated for vaginal cancer as a result of DES exposure in utereo..

        Thankfully I didn’t get it but I had to endure 4 years of repeated exams, testing and fear. Years later they learned that DES mom’s have higher rates of breast cancer and DES daughters have double the rates as well. That combined with my work in the AIDS community in the late 80′s is what empowered me to bring my background in IT, politics and health care together.

        As a volunteer I served as the patient centered design voice on the ONC governance committee that stood up the National eHealth Collaborative and got two seats dedicated to consumer / patient voices; the sole patient voice for the Women’s workgroup at CCHIT; the consumer voice on the national demonstration ONC Beacon Community project at INHS (diabetes): the consumer voice at the Puget Sound Health Alliance and the only patient on the State Hospital Association – patient safety committee.

  7. Second pass – this one’s a ramble, branching off the core question:

    When I first read the thing about who’s a geek, I didn’t think it was restricted to nerd geeks (techies), I though in terms of citizens who take matters into their own hands. Because even at my geekiest, that’s all I was doing: solving a problem that didn’t have a solution, so I used what was at hand.

    When I wanted to track my tumor sizes, I used Excel, because there was no comparable slick graphing thing purpose-built for that. But even if an API did exist for PatientSite (my PHR), I didn’t have a clue what to do with it. See? So I used what I did know how to use.

    In that sense, the “pioneer geek” is simply someone who senses a need and doesn’t find a solution so starts cobbling. Does that qualify?

    (And when it IS an IT geek who does it, their cobbling uses far more technical “raw materials,” because that’s what they have at hand.)

    ANYway, I went to see what Wikipedia has to say. LOL:

    The word geek is a slang term, with different meanings ranging from “a computer expert or enthusiast” to “a carnival performer who performs sensationally morbid or disgusting acts…”

    I’ll never again deny being a geek: sensationally morbid or disgusting??? W00t!

    Back on track: this “pioneer/alpha geek” thing is what’s at the heart of disruptive innovation. IMO:
    The early products in a disruptive event are POOR imitations of the real things. (I remember how laughable PageMaker 1.0 was – it made no attempt to even RESEMBLE the fonts in its output device, the LaserWriter)It’s common for adopters to cobble together workflows that make professionals laugh or gasp (the unwashed hordes who used PageMaker had no CLUE how to set type … all they knew was what they wanted, which was a page with fonts)It only happens when there’s a grass roots need that isn’t currently fulfilled by the market – at least not at an affordable price.

    And that smacks of US healthcare today: increasing millions of people can’t afford insurance (so they’re self-pay), or whose insurance is so expensive that they’ve gone high-deductible, so for all practical purposes they’re self-pay.

    Sidestep for a moment: lately I’ve been saying that healthcare is the only industry where they don’t START the definition of quality by asking “What do customers want?” Hm, no wonder the industry hasn’t converged on never-ending improvements.

    Back to self-pay: If I were running the Brookings Institution or a branch of Robert Wood Johnson, I’d be quietly watching the behavior of people who are now left to their own, economically, but do have access to tools – smartphone or computer, including libraries. Because what those people cobble together will inherently be value-driven, producing results they actually care about, regardless of what any regulator or company thinks, or nobody would be doing them.

    If I wanted to be radically disruptive in a company or non-profit, with a long-term outlook, I’d be handing out cheap toolkits and seeing what poor people do with them. I betcha in 10 years some of them will have moved up-market. Because their root need is real, and at it’s stripped of excess baggage.

    So:
    If we re-color “geek” in this sense to mean “one who cobbles together home-made solutions to their own real-world problems,” I think if fulfills O’Reilly’s template of innovators “who live in a world of their own. They see and act on premises that are not yet apparent to others.”There’s a lot to be said for looking not at the big-money innovators but at the grass roots, because that’s where the root life-or-death need exists.

    And in the conventional-geekier community (tech geeks), that takes the form of Hugo Campos, quoted above, who wants to get his damned data out of his device and do who-knows-what with it. HE will take the risk of an innovation that may or may not pan out.

    That’s also why I’m intrigued by the idea of the OSCON open source conference digging into health innovation. They may not YET have a health crisis in their families, but I KNOW their time is coming. Give ‘em a taste of the subject now, and it becomes a time bomb of the best variety. I know personally what it’s like when the need hits and you suddenly do care.

    (For those who don’t know it, the typesetting industry was killed by desktop publishing in ten years, and it was mostly all over in five. Only shreds remained. Much great value and true skill was wiped out, but we typesetting vendors believed that our extra costs were NECESSARY, and the consumers voted otherwise. And today you have fonts in your frickin’ COMPUTER, and even in your phone. Dat’s democracy, baby.)

  8. Although she might not perceive or categorize herself this way, I’d say Patricia Anderson, Emerging Technologies Librarian at Taubman Health Sciences Library at the University of Michigan.

    An early early adopter of online technologies of value to health and healthcare, she’s generous with her knowledge and information.

  9. I concur with Meredith that Patricia Anderson is a polymath of the highest order. The best part is that she curates the information she taps into and shares the most vital and important links for public consumption and utility. Her librarian’s sense of properly vetting her sources is a huge plus for the health care stakeholders who receive her tweets.

  10. I would definitely agree with Meredith and nominate Patricia Anderson. She has been a vigorously energetic proponent of emerging technologies in health/healthcare as well as a general resource of knowledge.

    I would go as far as saying that she probably has helped spur a generation of alpha geeks, she has most definitely been an inspirational source for me ever since I got onto Twitter almost 4 years ago.

    Dr. Ernie Medina has almost been in the health gaming space for quite some time and has led the way on a number of initiatives.

  11. I can’t claim to have a rare disease, but I certainly have had to figger it out myself: I dissociate, that is to say, hear voices sometimes that are aspects of self. They talk to me when I am walling off feelings so thoroughly and so effectively that I don’t know what I’m feeling, or why. Doctors called it hallucinating, and gave me lots and lots of pills. Assured me I didn’t need to work on myself, just take these pills. Seriously. In almost exactly those words. It’s a long story, 34 years long as a matter of fact, but I currently am taking 12 1/2 % of the original dose, and my hope and intention is to reach zero…maybe not this year, but as soon as I’m sure I can do it.

    A friend recently suggested, “You ought to give a class about how you substitute self-management for the pills. A lot of people would be helped.” I’m getting my thoughts together now, to try to be helpful to others. In the meantime, some readers might be interested in a pamphlet I wrote a few years ago, which has been published by Pendle Hill, a Quaker publishing operation. Check out their website, pendlehill.org. The name of the pamphlet is “God’s Healing Grace: Reflections on a Journey with Mental and Spiritual Illness.”

    As an example of a self-help strategy I have found extremely helpful, which really made the doctor and therapist roll their eyes when I finally told ‘em: I hear voices, right? They happen because they need to tell me how “we’re” feeling. So, one night I called a conference, invited them all to say what “we” were thinking and feeling — the idea being that the voices always happened when I was asleep — I woke up already crazy, see — and maybe if I invited “us” to say what was on “our” mind before falling asleep, I wouldn’t need to “hallucinate” (this syndrome is classic post-traumatic stress disorder (PTSD), by the way, which is a result of childhood trauma). Both doctor and therapist were strictly not-spiritual folks; both would have urged more pills on me if I’d told ‘em what i was doing. Sure, I made mistakes, but within a few months of nightly conferences, I was no longer hallucinating all night, every night, but instead slept peacefully 3 out of 4 nights. THAT I reported to the medical types — when I had a solid two months worth of that success behind me. They rolled their eyes, but they couldn’t argue with success. Later, my husband politely asked the doctor if he’d ever told his other patients about my approach. No. “She made it work for her,” was the doctor’s way of dismissing it.

    Since then, some English doctor has indeed actually listened to his patients and taught others to conference with inner selves successfully. (20 years later, but still.) To call myself a geek is to create gales of laughter in the hearers. But I do call myself a creative problem solver. I shared a story I wrote about my conferening with voices with a young friend who also dissociates, and she later reported she uses the conferencing metaphor as a journaling technique, and has found it very powerful.

    Going against the best medical opinion takes courage. But hey, courage and willingness to learn from my mistakes means I’m now 78 1/2 percent medication free. And counting.

    • This story sounds similar in several respects to the disturbing account told by Elizabeth Kenny in her monologue, Sick, a play I believe many e-patients – if not health care alpha geeks – would relate to. I was fortunate to see it when it was playing in a small theater in Seattle; I don’t know whether it is or will be performed anywhere else.

      Misha Berson wrote a good review of the play in The Seattle Times: ‘Sick’ is a scary plunge into a tale of misdiagnosis and recovery

      Seattle actor Elizabeth Kenny has a story to tell you. It is riveting. It is not pretty.

      It includes psychotic episodes with hallucinations, time in a locked psych ward, helplessness, confusion, rage. Also, amazingly, a happy (and lucky) ending.

      In her almost-solo, New City Theater show “Sick,” Kenny outlines her sudden plummet a few years ago into a perplexing maze of terrifying symptoms. And into a quagmire of misdiagnosis and harmful treatment, all triggered by a not-uncommon gynecological problem.

    • Mariellen, thank you so much for your amazing comment.

      “Creative problem solver” = alpha geek. I like it.

      I have zero authority to comment on your technique so I’ll just say Wow and leave it at that.

    • Mariellen, it’s taken me most of 24 hours to figure out what to say in response to your comment.

      Your innovation, of course, is of a very different sort than what we were asking about. On the other hand, it’s in line with the other aspect: What if patients themselves got to define the goal of treatment? And contribute to how we get there?

      My only experience that comes close to yours was many years ago when I had some EMDR therapy, for something far milder than your experience. It was effective, and during the process I felt an almost palpable calming inside me, not unlike what you describe.

      (All readers, be aware, I know no medical details, I’m speaking only as a lay consumer.)

      Thanks for sharing your experience, and my heartiest congratulations for the results you say you’ve achieved. Sleep well.

      • Hi Dave, and Suzanna,

        You ask the twin questions: What if patients themselves got to say what was the goal of treatment, and contribute to how we get there?

        I doubt that the shrinks and I were vastly in disagreement — the goal of treatment for both of us was to get control of the illness. Unfortunately, their solution was to control the patient, not the illness: heavy, heavy meds, with dangerous side effects, and more pills to control the side effects, and more pills for the side effects of the new pills…I was a zombie. I accepted the meds at all times; I had no desire to be crazy. We were in agreement about the ends, just not the means.

        I have come to the view that the medication is a crutch, one that I hope and intend to throw away someday. A crutch, not a permanent implant. I want to make it clear, my last three doctors have all worked faithfully with me to help me throw away the crutch in a responsible manner. Actually, I am more cautious and conservative about medication reductions than they are. It’s not until I know it’s second nature to control the illness at one medication level before I suggest reducing again. Each medication reduction is its own experience, just what sorts of symptoms will emerge. Each reduction takes a lot of work, to monitor, manage, moderate, and maintain, until my body takes over what the medication was doing for me.

        How can I say this: I interview doctors and therapists nowadays before I agree to work with them. I have antibodies against paternalistic and controlling doctors. There is nobody more controlling than a controlling head-doctor.

        The young friend I mentioned has PTSD, and has found EMDR a very healing modality. You call it calming; my impression of the changes in her are that there is a growing peace in her, as she walks into her inner darkness with the accompaniment of a therapist that helps her reframe her experiences. She ways EMDR makes one dream a lot more, and that the dreams are both upsetting and also an opportunity for further healing. It takes humungus courage to walk into one’s inner darkness, with or without a good therapist.

        Thank you for asking the right questions. It’s about time!!

        • Hey, patient education can work both ways, I hope. Can this patient educate a few doctors?

          Last year during my annual physical, my primary care doctor said with genuine astonishment, “You’re 69 years old, and taking only one prescription?” Yes, and I’m working on reducing that one. I was part of a 12 Step group for mental sufferers for six years. I wish I could say I was still in touch with those friends, but all but one of them are dead, and that one is in a nursing home–not because of her current mental health, but disabled by the medical treatments she received for it. In fact, all my other friends died from complications due to their medications.

          These were all nice, intelligent, hardworking and cooperative people, the sort doctos call compliant patients. They died from complications of compliancy. Take my friend Bob, who was on lithium for 13 years (for bipolar mood swing). Lithium is a poison. I took it for 8 years, much of that time working (successfully) to make it unnecessary. Bob’s kidneys failed; the nephrologist told him the lithium caused it. He was on dialysis for three years; the dialysis caused congestive heart failure. He became eligible for transplant. He chose it, he told me, because “I want to be able to whiz again.” The transplant required drugs to suppress his immune system; with it suppressed, he shortly died of something perfectly ordinary — if he’d had his immune function.

          It’s not just mental patients whose medical treatment causes their death. When I’ve tried to discuss this (very politely, I assure you) with doctors I knew not to be self-serving, they’ve explained that they were working for quality of life, dismissing my approach with, “Nobody wants to hear about lifestyle change.” Because they’ve assumed no one wants to undertake self-management, none of those dear dead friends of mine had the option of choosing whether or not to try lifestyle change, for their better (and longer) quality of life.

          i understand doctors have astronomical bills to pay for their highly specialized training, and that their time is too valuable to waste their breath on telling every patient he or she has a choice. But why doesn’t every doctor write a prescription to visit a health educator, someone trained to talk about diet and exercise with diabetics, and about self-management with mental patients, etc and so forth? Maybe 90 percent of patients would go to one session and say, “Forget it!” What if 10 percent took the idea and ran with it — what has the world lost because that ten percent were not empoweered for their own health? When I speak of health education, I don’t mean self care after open heart surgery — not that exclusively, anyway. I mean lifestyle education with the goal of prevention and even cure of existing conditions.

          I have a theory why it isn’t done: lifestyle change is not sexy. Specifically, it’s not macho. Lifestule change isn’t about power — power-over disease, but still basically about power. Why is it called a “war on cancer”? It sounds heroic. Heroes are bigger and badder than the germs, and they’re working for the cause of right and justice and patching people back together. Drugs and surgeries are called weapons in the war on cancer. Cooperating with the human body and psyche’s ability to heal themselves– who wants to be caught cooperating? We want others to cooperate with us; we don’t want to be caught cooperating ourselves. Certainly, not cooperating with the human body. Current medical practice is about power-over disease, not patient empowerment. To say we’re in a war on cancer is to say we’re in a war against the human body. To die of complications from a medical treatment the necessity of which could have been prevented by patient education is essentially to die of friendly fire. Friend or foe, one is still dead.

          I grieve for my friends — the secretary who wasn’t systematically informed about tasty and quick alternatives to white bread and baloney and cheesy chips, and died from complications of treatments for diabetes. I grieve for Bob, who died before he was 60, promising me, “Now I won’t just have to pray for you. I can crawl to the foot of the Throne for you.” Thanks Bob, but I still wish you’d had better medical care. While you’re at the foot of the Throne, could you mention better patient education for self-empowerment, too?

  12. It’s good to see Geeks making their way into the Health Care system too! They could really use some help in that department, as it’s important just like the other department. If you’d ask me, it should be a top priority, as the popular saying goes, “Health is Wealth”, which is very much true.

  13. Alpha geeks for me would definitely be the heroic doctors saving lives each and every day, life for let say the diagnosticians who are faced with the overwhelming premise of finding out a patient’s complication, with little to no time in their hands at all.

    Doctors are a gem of an individual in our society today, so they clearly need to be recognized more for what they do.

  14. Pingback: Virtual zeal: rare disease caregivers carry a powerful voice in social media | pharmaphorum

  15. Pingback: Virtual zeal: rare disease caregivers carry a powerful voice in social media | CheckOrphan

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