So far in this series has looked at HITECH participation by hospitals (grumbling but in the game) and physicians (wary, on the sidelines), kudos for ONC’s three major policy points, and how HITECH is already moving the needle on the vendor side. Today we’re going to look at the reason the whole system exists: patients.

It’s possible to look at the patients issue from a moral or ethical perspective, or from a business planner’s ecosystem perspective. In this post we’ll simply look at it pragmatically: is our approach going to work? It’s our thesis that although you won’t see it written anywhere, the stage is being set for a kind of disruption that’s in no healthcare book: patient-driven disruptive innovation.

We’ll assert that in all our good thinking, we’ve shined the flashlight at the wrong place. Sure, we all read the book (or parts), and we talk about disruption – within a dysfunctional system.

If you believe a complex system’s actual built-in goals are revealed by its actual behavior, then it’s clear the consumer’s not at the core of healthcare’s feedback loops. What if they were?

We assert that to disrupt within a non-working system is to bark up a pointless tree: even if you win, you haven’t altered what matters. Business planners and policy people who do this will miss the mark. Here’s what we see when we step back and look anew from the consumer’s view:

  1. We’ve been disrupting on the wrong channel.
  2. It’s about the consumer’s appetite.
  3. Patient as platform:
    • Doc Searls was right
    • Lean says data should travel with the “job.”
    • “Nothing about me without me.”
  4. Raw Data Now: Give us the information and the game changes.
  5. HITECH begins to enable patient-driven disruptive innovation.
  6. Let’s see patient-driven disruption. Our data will be the fuel.

1.     We’ve been disrupting on the wrong channel.

The disruptive innovation we’ve been talking about doesn’t begin to go far enough. It’s a rearrangement of today’s business practices, but that’s not consumer-driven. Many pundits, e.g. the ever-popular Jay Parkinson, note that today’s economic buyer isn’t the consumer, which is screamingly obvious because consumer value isn’t improving as time goes by.

When we as patients get our hands on our information, and when innovators get their hands on medical data, things will change. Remember that “we as patients” includes you yes you, when your time comes and the fan hits your family. This is about you being locked in, or you getting what you want.

I (Dave) witnessed this in my first career (typesetting machines) when desktop publishing came along. We machine vendors were experts at our craft, but desktop publishing let consumers go around us, creating their own data with PageMaker, Macs and PostScript. Once that new ecosystem existed, other innovators jumped in, and the world as we knew it ended.

(Here’s a tip from those years: this outcome is inevitable. Ride with it, participate in it, be an active participant, and you can “thrive and survive.” Resist and within a generation you’ll be washed away.)

2.     It’s about the consumer’s appetite.

We don’t hear it often in healthcare, but disruption Is driven by shifts in buyers’ appetites over time. As products improve, some buyers reach a point where “more” is no longer attractive. If we had 800 mpg cars, a 900 mpg one wouldn’t have more appeal. Other factors start to win.

Clayton Christensen took this analysis to a deeper level In a 2002 paper, as he scrutinized not whole products but deeper questions of how vendors should make strategic decisions to be more competitive: should they make tightly integrated high-performance disk subsystems, or should they build modular components that might run a bit slower but offer more versatile configurations?

In “Disruption, disintegration and the dissipation of differentiability” [subscription required] he demonstrated that the answer varies with time, depending on whether buyer appetites were being fully served: when people want more, they accept a proprietary interface, but once appetites are satisfied, other factors win out. In disk components, when speed is sufficient, buyers find more value in the flexibility of open interfaces.

If you view your health data as a modular component in the “health web of the future,” you see that today it’s tightly integrated – with your provider. That prevents you from seeking care elsewhere, and it prevents you from adding value to your own data by applying innovative tools. To us that’s harm. It’s not just restraint of trade, it’s restraint of health.

Give us our data, and let us feed it to other tools, and Katie bar the door. More on this in a moment.

3.     Patient as Platform:

In Dave’s HHS testimony last week at the Meaningful Use workgroup, he cited Doc Searls , one of the great visionaries of the Web’s early years: in 1999 he co-authored The Cluetrain Manifesto, which foresaw the social impact of people getting together on the web.

He continues to be a pretty slick thinker: he’s now involved with VRM (Vendor Relationship Management), which turns CRM (Customer Relationship Management) on its head, putting the customer at the center. Wikipedia says, “The purpose of VRM is to equip individuals with tools that provide both independence from vendor ‘lock-in’ and better means for engaging with vendors.” Hm, sound familiar?

a)     Doc Searls was right. So imagine Doc’s reaction when, in 2008, he had a medical crisis and his MRI data, for which he’d paid, couldn’t be read by another physician (another vendor).

He ended up with a time-pressured choice to do surgery that proved unnecessary – and which caused a 1-in-20 complication. He posted that “the closed and proprietary nature of heath care is itself a disease that needs to be cured. … I believe the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.” Jon Lebkowsky’s excellent post illuminates the parallels with the e-patient movement.

b)     Lean says data should travel with the “job.” Doc’s idea is consistent with Lean, too.

In March I  (Dave) participated in my hospital’s annual Lean retreat, so I had occasion to read Lean Hospitals, by Mark Graban , Senior Fellow at the Lean Enterprise Institute. He recounts how lean manufacturing outperforms massive ERP systems.

ERP tries to keep all information under central control and deliver it where and when needed in the manufacturing process. Well, give that a Fail: in a Lean factory, data travels with the product, so it’s always where it’s needed when it’s needed. Graban notes, “Lean supports the idea of having exactly what you need, where you need it, when you need it.”

Lean has two arguments for this approach. First, in Lean, moving things around is a classic type of waste. Why not keep it where it’s needed? Second, when errors happen, root cause analysis often reveals that the right information wasn’t where it was needed, at the moment it was needed. (See also AHRQ’s “Five Rights of Clinical Decision Support”.)

In healthcare the consequences of inaccessible facts can be mild or catastrophic. From the consumer perspective it’s crazy to pay a professional to develop information about my health for me and not let me take it with me.

c)      “Nothing about me without me.” A byword of the patient safety movement, the phrase “nothing about me without me” is credited to Diane Plamping PhD. She articulated this in 2000 following a five-day Salzburg Seminar retreat, with 69 participants from 24 countries.

4. Raw Data Now: Give us the information and the game changes.

People often ask, “If we give you your data, what are you going to do with it?” We don’t know – that’s the point: innovators haven’t gotten their hands on it yet!

Twenty years ago Tim Berners-Lee invented the Web. In his TED talk a year ago he told why: he worked in a fascinating lab, and people would bring fascinating and useful information on all sorts of computers. “I would find the information I wanted in some new data format. And these were all incompatible. The frustration was all this unlocked potential.” He proposed the Web: linked data.

It can be hard to see huge potential in a simple change. After Tim’s boss died, the original proposal was found in his papers. In the corner he’d written, “Vague, but exciting.”

Tim’s next big vision says today’s internet stops short: it lets us see other people’s interpretations of datasets, not the data itself. So his 2009 TED talk agitates for change. By the end of the talk he had people chanting, “Raw Data Now.”

Pew understands this: they’ve released all the raw survey data for Susannah Fox’s new study of chronic disease so others can split and crunch however they like. And open data is a hallmark of the Open Science movement.

What if instead of altering healthcare within today’s system, we could do what Eric Dishman proposed at TED and find ways to detect problems before there’s any sign of trouble?

Here’s a glimpse: Dave’s friend Dorron Levy (a data geek if there ever was one, but no physician) has come up with a deeply geeky analysis of the MIT Sudden Cardiac Death EKG database. In these graphs don’t worry what the axes mean. (His analysis is proprietary.) Each shows his analysis applied to digital EKG data from five people, all apparently healthy:

Everyone in the second graph died within 24 hours.

They all looked healthy, and so did their EKGs. But those five dropped dead. His analysis spots early warning signs with clever logic. Imagine if that logic was embedded in some sensor that beeps when trouble’s starting. If you were at risk, wouldn’t you want one?

Why has nobody in the healthcare industry expressed interest in this? We don’t know, but we’d sure like more early warning sensors.

Dorron says one of the main factors holding him back is the lack of more data to analyze. Meanwhile, gazillions of petabytes sit locked up in silos. Rapunzel, Rapunzel, let down our data.

5. HITECH begins to enable patient-driven disruptive innovation.

HITECH has a number of specific provisions that will reunite patients with their data (see the Appendix below). This is a great start!

6. Let’s see patient-driven disruption. Our data will be the fuel.

By definition, intractible problems resist conventional thought. If we want real change, let’s consider alternate approaches, ideally from deep thinkers who can see the structures that keep the problems in place.

So yes, we’ll gladly quote Tim Berners-Lee, because his big idea 20 years ago worked out pretty well – the power of linking documents – and now he wants to link the data itself. And we’ll quote Doc Searls, because his Cluetrain ten years ago foresaw things that some of us are only now learning: the internet gives us autonomy.

And when Doc’s stuff hit the fan, he saw immediately that we’re the big stakeholders, the ones who win or lose depending on the accuracy and availability of the information our doctors have at decision time.

So as HITECH promises to give us our data, we call out: “Innovators, start your engines. Fuel is on the way.” Disruption is a real dynamic, driven by real forces. Put the data in the consumer’s hands, and let real patient-driven disruption begin.

APPENDIX – HITECH Provisions to Share Data With Patients

Stage 1 — 2011 (from Meaningful Use NPRM, December 2009)

  • Physician (EP) Objectives
    • Send reminders to patients for preventive/ follow up care
    • Provide patients with an electronic copy of their health information (within 48 hours)
    • Provide patients with timely electronic access to their health information within 96 hours of the information being available to the EP
    • Provide clinical summaries for patients for each office visit
  • Hospital Objectives
    • Provide patients with an electronic copy of their health information (within 48 hours)
    • Provide patients with an electronic copy of their discharge instructions and procedures at time of discharge, upon request

Stage 2 – 2013 (Note: Items for Stages 2 and 3 are from an initial Meaningful Use Matrix endorsed by the Health IT Policy Committee ( HITPC) in June 2009. Details and specific rules have not yet been developed.)

  • Physician (EP) Objectives
    • Access for all patients to PHR populated in real time with health data
    • Offer secure patient-provider messaging capability
    • Provide access to patient-specific educational resources in common primary languages
    • Record patient preferences (e.g., preferred communication media, health care proxies, treatment options)
    • Incorporate data from home monitoring device
  • Hospital Objectives
    • Access for all patients to PHR populated in real time with patient health data
    • Provide access to patient-specific educational resources in common primary languages
    • Record patient preferences (e.g., preferred communication media, health care proxies, treatment options)

Stage 3 – 2015

  • Physician (EP) and Hospital Objectives
    • Patients have access to self-management tools
    • Electronic reporting on experience of care
    • Provide patients, on request, with an accounting of treatment, payment, and health care operations disclosures

Article Series – Is HITECH Working?

  1. Is HITECH Working? 7 Observations Mom Could Understand
  2. Is HITECH Working? #1: Hospitals are grumbling but are playing in the game; success is not guaranteed.
  3. Is HITECH Working? #2: Key physicians will sit on the sidelines (at least for now).
  4. Is HITECH Working? #3: ONC got it right on the 3 major policy interpretations: Meaningful Use, Certification, Standards
  5. Is HITECH Working? #4: While most attention has been focused on demand side incentives (will doctors and hospitals buy EHRs?), the supply (vendor) side of HIT is already transforming.
  6. Is HITECH Working? #5: “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation.
  7. Is HITECH Working? #6: HITECH and Health Reform Objectives are Synergistic
Dave deBronkart, MD, better known on the internet as “e-Patient Dave,” is one of the leading spokesperson for the e-Patient movement. A high tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with a median survival of just 24 weeks. He used the internet in every way possible to partner with his care team and beat this unbeatable disease. Today he is well. In 2008 he discovered the e-patient movement, and began studying, blogging, and speaking at conferences, and in 2009 was elected founding co-chair of the new Society for Participatory Medicine. In 2010 he released his first book: “Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).” He blogs frequently at
Vince Kuraitis JD, MBA, is a health care consultant and primary author of the e-CareManagement blog where this post first appeared.
David C. Kibbe, MD, MBA, is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on healthcare professional and consumer technologies.

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58 Responses for “Gimme My Damn Data!”

  1. You are probably right, Merle. If somebody wants a copy of their records, they should take whatever is available. And Dr. Walker is also right, without standardization and interoperability between providers, the records will be clumsy and frequently incomplete.
    But here is my problem with this approach. Why do we want to task the patient with the responsibility of maintaining a complete medical record? Why shouldn’t this be a function of the Medical Home?
    Once we “empower” the patient to “control” his/her medical records, it will become their responsibility. Some will manage to do this and even enjoy doing it. Others, most everybody, will not. I think this is a recipe for increasing disparities, and I don’t see how you ask folks in third world countries to “control” their medical records.
    I for one would expect that my Medical Home will do the aggregation and all I would have to do if I wanted a copy, is to click that Download button.

  2. I think we have different perceptions of the health IT world and very different solutions for improving it, Margalit. We share common objectives, namely, to improve care quality and lower its cost. But beyond that, I think we part company.
    I believe you see care providers as the center of the patient’s health record world. Each of a patient’s care providers keeps his/her copy of the patient’s records (in electronic formats) and when the patient seeks care or merely wants to check his/her records, the patient accesses them via the Internet or some other electronic network. In this system, the patient’s records aren’t really aggregated in one place and the patient really doesn’t control them. This view of the health IT world is shared by most vendors, consultants, academic observers, and government agencies (at all levels).
    I see such a system as more of what we have today only all the records are electronic and linked by an electronic network — today’s system on electronic steroids, if you will. I also wonder how and when it will come to pass, if ever.
    My concerns are, first, that care providers haven’t bought into this concept until now because it requires them to act against their economic self interest, so what makes you think they’ll buy in now? Do you really think a $44,000 subsidy will entice them into adopting an EMR system whose all-in-costs can run seven or eight times that? The docs I know are far too smart to get hoodwinked into such a bad deal!
    My second concern is the staggering complexity and cost of building and maintaining the requisite electronic network. Even the proposed NHIN Direct will cost many $billions. Who can afford to pay for them? Certainly not our federal or state governments.
    Third, even assuming this program went forward, how many years will it take? And what do you tell the poor patients who suffer unnecessarily during these interim years? Sorry? Advocates of this approach may empathize with a patient’s plight but they seem to have no sense of urgency to solve it!
    I see a different world. I see the patient as the center of the patient-record universe. Each care provider keeps his/her patient records for their own purposes in whatever format they like, but the only place they are aggregated from all providers is in the patient’s hands.
    After every visit, the care provider digitizes (read: scans and indexes if the records are paper) a patient’s records and uploads a copy to his/her patient’s record repository (in our system it’s a flash drive called a MedKaz™). The patient owns them and controls who sees them. And they are shared with the patient’s care providers when the patient hands them on a flash drive or other electronic device to his/her care provider. Thus, our cost of making a patient’s records available when and where they are needed, i.e., “networking,” is zero. And because these records are on an electronic device, digitized and indexed, they can be accessed, sorted and searched electronically and are just as manageable as other electronic records.
    This view is partially shared by care providers (the part they like is keeping their records the way they want to keep them) and consumers/patients who, for the first time, have control of their records.
    I should add I’m not suggesting patients want to actually enter data. They want it done for them (that’s why the currently available PHRs, including Google Health and HealthVault have little or no traction).
    Sorry for the lengthy reply but it’s hard to compare concepts while standing on the proverbial one foot!

  3. Merle, thanks for the clarification. Your solution is good for where we are now, and it’s definitely a step up from boxes full of paper.
    However, it is not a comprehensive solution for several reasons.
    1) People are bound to misplace the flash drives or forget to take them with them at all times.
    2) Even if they are on your key chain, if you have an accident or emergency, it is not very likely that they will be looking for your keys before loading you into an ambulance.
    3) Most people will not bother to do the aggregation work.
    4) If we are looking for a global solution to encompass third world countries, flash drives are not an option.
    That is why I would like the concept of Medical Home to include, as it was intended from the beginning, an aggregation of all records. Every time you receive medical care, the provider should ask where is this patient’s Medical Home, and send all information there, electronically and in a standardized format. If you ever want a copy, you would download you medical record in its entirety from your Medical Home Portal.
    Are we at least a decade away from this utopia? Yes. Should folks try to aggregate their stuff on a flash drive in the mean time? Sure, why not. Much better than feeding it to a search engine company making money from selling ads, or similar other venues.
    All that said, I think there are several Patient Portals, like Kaiser and the VA that have a pretty decent Medical Record, and I know for a fact that several EHR vendors have similar offerings. These may also serve to bridge the gap until Medical Homes take off and become standard.
    I really think that HIT is only a part of what needs to happen if we truly want to fix health care.

  4. Margalit, you’re absolutely right about the relative importance if HIT in the scheme of our healthcare system. It’s only one part of the solution — but a very important part because the availability of medical information about a patient is fundamental. It forms the basis for the diagnosis and treatment of problems, and the coordination of care among a patient’s care providers whether they are in the same community or scattered around the country/world.
    It also is the starting point for reducing a whole category of medical errors caused by the lack of information. In addition to the tragic loss of life and pain and suffering caused by medical errors, two years ago McKinsey pegged such errors as costing more than $100 billion annually. A more recent study by Rand estimated their costs at around $700 billion.
    The deficiencies you raise about the patient-focused system I propose unfortunately apply equally well to your Medical Home and other electronic networked solutions. Just as the patient can lose their flash drive (in our system they do have a simple automatic backup/recovery procedure), your system collapses in a power outage. And if you are unconscious in an emergency, how does an ER doc know where your medical home is or even what your name is? Finally, in the third world where electrical power generally is conspicuously absent, what good is a system requiring an electronic network?
    Similarly, the Kaiser and VA portals are sorely lacking. They contain only that information generated while you are in their systems. Your records from before you joined their programs and from out-of-network care while you are in their programs, aren’t in their systems. I should note that this creates a monumental problem for our military.
    The truth is, there is no perfect solution so we must do the best we can with what we have and can afford. What distresses me is that we are not doing the best we can now, and we as a nation are paying a terribly high price in both poor outcomes and financial costs.

  5. Vikram C says:

    I noticed you own Health Record Corporation that helps manage PHR. Could you share key issues which are preventing collection and dissemination of data in computable format and what could be done to help alleviate that? Maybe you could author an article.

  6. james walker says:

    Bev, Merle, Vikram, Margalit, and others, I am sincerely enjoying the thread, and appreciate the warmth of human interaction in the often lonely trenches of HIT policy work. Thank you also for taking seriously the need to keep the developing world always in our dashboard as we discuss solutions. If we look at how one’s bank account and credit scores are formalized and made available ubiquitously, surely we can do that with medical data. As a full-time general practitioner, I often marvel at how algorithmic that much of my daily medical care and medical thinking / ‘judgement’ actually is. There are key ‘data’ elements in the history, exam, symptoms, and tests history that guide my decisions down very predictable algorithms for most things. I don’t think we have to wait for Star Trek to begin exploiting this on a practical level – nor do I think we can afford to wait. I share Merle’s skepticism that the medical community will easily accept complete data standardization and interoperability; however, the incentives of Meaningful Use – along with the impending Medicare solvency crisis simultaneous with a flood of newly-insured new patients thrust onto the ailing, outdated delivery system – to me provide an ideal fertilized field for innovators, specialty organizations, and policy entities to begin working in to bring about a fundamentally different delivery system. We are already seeing the beginnings of this with the movement towards accountable care groups (like Mayo), the patient-centered medical home, and the steady rise of the mid-level practitioner. The HITECH act’s effects are quietly taking place, as well – in Texas, we are feverishly trying to hammer out a statewide HIT implementation and HIE process on multiple fronts: state-level work groups, grassroots HIE coalition work, regional HIE groups, and physicians’ groups work. There is even negotiation between the VA and one HIE of which I am aware, for a records portal. As we saw with the evolution of the internet, things started as an esoteric means of communication; then the bulletin boards; then AOL; now, widespread usership and ubiquity within a common interface – mainly driven by value and utility. Personally, I think patient data will not reside in one place or another definitively (or one format or another, even); there will be a currency effect with various entities collecting, formatting, processing, summarizing, analyzing, storing, and re-transmitting patient clinical data. Each end entity will choose which data from the array to use based on their requisite needs and level of trust. Systems / entities which retain the highest validity and utility of their data will rise in prominence and value. The short cut for now appears to be the regional HIE – akin to yesteryear’s AOL. As for the developing world’s technical and even basic infrastructure limitations – such as no T1 lines to some places, no consistent electrical power, and perhaps outdated computers – there are work-arounds that easily address these limitations: battery-power; cell-based networks; and really most of the data is text databases – not heavy on CPU or memory requirements – and most could run on computers we throw away every day. I remain encouraged. But I do think it will take personal leadership – not merely be evolutionary. Real people will need to step up and make it happen on various levels. Hopefully, we will be equal to the task…

  7. Vikram, thanks for the compliment but I’m not the one to explain the problems of data interoperability in technical terms. On the superficial level, the problem is simply that medical record data are not structured and formatted the same way in all systems, and the terminology used to define data fields is not the same.
    The result is that you can’t import or receive data from my EMR system into yours, and vice versa. Nothing is standardized. There are teams organized by government agencies and non-profit groups working earnestly to rectify this but progress is very slow.
    My concern is whether this effort will result in serious improvements. Are they solving or ignoring the real problems? Standardization is clearly essential. But if it merely serves to entrench today’s EMR systems, it may be akin to rearranging the deck chairs on the Titanic. Today’s EMRs have had such low acceptance for many years by physicians and hospitals that one has to wonder if interoperability is the problem or if it isn’t something more fundamental. Enhancing systems that don’t meet the needs of their intended users won’t increase their acceptance.
    The one thing I am certain of is that, to be effective, a solution to the problems of healthcare IT must align the interests of the parties. We can’t keep asking physicians to disrupt their practices and spend inordinate sums to adopt EMR systems when they are so cumbersome to learn and use and the financial benefits flow to others. Similarly, we can’t keep pushing systems on consumers/patients that don’t satisfy their privacy and security concerns or are too burdensome for them to use.
    And James, the same obvious principles must apply to networking. Networks are costly and complex both to build and maintain. To date, no one has fashioned a financially viable and sustainable business model for them. Government funding certainly isn’t a lasting solution.
    So what’s the answer? We have to look at the problems through different prisms. We have to drop our preconceived solutions that don’t/won’t work and formulate solutions that meet the needs of their intended users. That’s precisely what I fear the many prestigious and hardworking committees are NOT doing!
    We’re looking through the wrong end of the telescope. We have to design systems that help — not burden — physicians. We have to design a simple, viable system that gives providers access to a patient’s records when and where they need them. And we have to satisfy the wishes and needs of consumers.
    What’s called for is “disruptive innovation” — precisely what Dave deBronkart called for in his initial posting!

  8. vishal says:

    I think the problem in interpreting this term i.e ‘meaningful use’ is as said by Merle is looking at it through the wrong prism. I would add further that the medical practitioners are looking to avail of this federal incentive by trying to comply with the definition of meaningful use but at the same time EHR providers are looking at their own set of profits.
    This misunderstanding is mostly I believe as a result of wrong interpretation of the federal guidelines. The EHR providers need to look at these guidelines from the prospective of the practitioners who deal with different specialties.
    Each specialty EHR has its own set of challenges or requirements which I believe is overlooked by most EHR vendors in a effort to merely follows federal guidelines. This is resulting in low usability to the practitioners, thus less ROI, finally redundancy of the EHR solution in place.
    There are few good links which I came across when I was browsing on these topics.
    Usability/meaningful use<a href="
    Certification criteria for EHR:
    A pretty handy ROI calculator for any practitioner:

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