Gimme My Damn Data!

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

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 e-patients.net.
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 replies »

  1. Hi,
    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=" http://www.waitingroomsolutions.com/wrs/arra-stimulus-money-44k-arra-emr-stimulus-bill-arra-ehr-stimulus-incentives
    Certification criteria for EHR:
    A pretty handy ROI calculator for any practitioner:

  2. 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!

  3. 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…

  4. Merle,
    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.

  5. 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.

  6. 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.

  7. 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!

  8. 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.

  9. James,
    This has been a good discussion and I understand your desire to have the perfect system, especially since there is so much interest in healthcare IT and the government has opened the funding spigot!
    Unfortunately, I don’t share your optimism that you will get what you want any time soon. From what I see, read and hear from many docs who keep paper charts, large numbers will forgo the government’s financial incentives and stick with their current systems at least for the foreseeable future. (see John Moore’s posting today: “Even with Incentives, Docs May Forgo EHR Adoption”)
    So it may take considerably longer than today’s EMR system advocates expect before EMRs are universally implemented (and those that eventually are implemented may look a lot different from what’s out there today for a variety of reasons).
    Should we simply wait until that happens? What about the people whose suffering and problems can be alleviated today if we only would implement what is doable today?
    I choose not to wait. The patient-focused PHR system I described is doable in the immediate future. And since my objective is to improve care quality and lower care cost — not merely to implement a particular data management system, I choose to go with what is doable now and start meeting my objectives now. So we’re building it now! It’s called the MedKaz™.
    I take the position of an old time antiques auctioneer I met years ago: “It ain’t where you start that counts. It’s where you end up!” I’m willing to start modestly and build — and along the way meet the needs and wishes of a lot of people!
    A final clarification. Please don’t conclude, because the system I described accepts pdf documents, that the documents are unmanageable. I am not suggesting we merely convert an unmanageable literal pile of paper to an unmanageable virtual pile of paper. The pdf documents will be enhanced with digital indexing fields so they can be sorted and searched electronically by key criteria — thereby avoiding the problem you cite of having to “sort all the files again and again.”

  10. Merle,
    A good discussion; yet I must drive home your last points: records in unstandardized format ‘are simply unmanageable’. PDF records availability as a concession / compromise to the sticky issue we are discussing might actually thwart (quite possibly for another decade or more) the quantum leap in healthcare delivery that would result from full standardization and fluidity of clinical data. Waiting for graphic JPG files or PDFs to load and sifting through them onscreen is at least as difficult as the same on paper; and the unformatted data requires more time to scan and assimilate by the physician’s eye. Unless a summary sheet (as I tend to make on the front of each chart) is meticulously drafted, one has to sort all the files again and again (like I tend to do when I sit down in a patient room: I load my short-term memory with the patient’s global data during the first 3 or so minutes of each visit). To say this is inefficient is too kind, when the system is capable of doing so much better. Not to mention the absolutely amazing results we could expect from standardization, as others and I have brought up above. I admire you for making that work for you, don’t get me wrong, because that is more than many are willing to do; but a Band-Aid is not acceptable when major surgery is needed. We will perhaps never again have the kind of resources and attention dedicated to healthcare reform as we do now after a whole year of that issue being the number one US domestic agenda piece. If surgery is to be done, it must be now. Is it possible? Absolutely. We should go for it.

  11. Margalit,
    You’re right. Since 85% or so of docs keep paper records, the best they can do is give their patients pdf copies of their records. This apparently doesn’t satisfy you but it’s good enough for me for now.
    The issue is what do you want to accomplish. I’m satisfied because my records, even in pdf form, can be indexed and managed electronically. Now, my care providers can coordinate my care. They can access, sort and manage my records and find in an instant the information they need to diagnose and treat me. Is it short of perfect? Sure. Is it a vast improvement over what’s available today? Absolutely. In my book, that’s not bad.
    I can also accommodate records from today’s EMR systems that can’t exchange records with one another. So now, in what you might call my hybrid system, I can aggregate on a flash drive all my personal health records from all my providers! And I can give them to any care provider who needs information about my health and medical needs. With my permission, any EMS provider, ER doc, PCP or specialist can access and manage my records electronically.
    This, in fact, is what Kaiser Permanente does. If members ask, Kaiser gives them pdf copies of their most recent records on a flash drive. The members, in turn, give their flash drives to out of network care providers (also to Kaiser docs in other Kaiser regions since patient records can’t be exchanged between regions).
    When totally interchangeable EMR systems arrive if they ever do, which is what Steve Downs and James Walker want, I’ll embrace them, too. But in the meantime, by making what I have work for me, I can satisfy the desire of patients to have and control their medical records, save lives, improve care quality for millions and save $billions — all while avoiding the delays, risks and exorbitant costs associated with Internet-based records. That’s what disruptive innovation is all about. Taking a simple, less-than-perfect approach to meet a serious, currently-unmet need!
    Now we come to Vikram’s question: who pays for uploading copies of my records to my flash drive? For now, I do. In the future, I expect consumer pressure will force payers to pay.
    What would having your records in your control and always available when you need them be worth to you? $10 per year? $100 per year? Something in between?
    Similarly, before the docs yell that they can’t afford to take their time or the time of their staffs to do this, would you docs agree to upload copies of your patients’ records if doing so meant you would take home (net) an extra $25 thousand per year?
    One last point. Yes, rbar, care providers are obliged by law to give their patients copies of their records if the patient asks. But have you ever tried to assemble your medical records? It is a nightmare! For whatever reason, most docs don’t want to bother and simply don’t respond when asked. Second, assuming you get copies of your records, they typically are a pile of paper (even if the doc has an EMR system) — which no care provider wants to bother with. They simply are unmanageable.
    Thus, rbar, the issue is not merely getting paper copies of your records, or viewing them on a doctor’s monitor. The issues are: to get them in a manageable form so they are useful to all your care providers; to own and control who accesses them; and to be able to draw on them and the information they contain to take charge of your care. That simply isn’t possible today — to the frustration of millions of people.

  12. rbar, I think following may be happening.
    1. Records are available after a certain delay.
    2. Upon request it further takes few days to process.
    3. Service date has to be provided in certain instances. You can’t just say provide all my records.
    4. Records are provided at higher price than one consider reasonable.
    5. Records are likely to be incomplete. Records are also likely to be misplaced and hence unavailable.
    6. Records are not maintained for long enough.
    7. Records can be transmitted in only certain medium, say letter or fax.
    8. It also takes time to figure out where to get records from, for a hospital.
    9. Payment for record can be made only in certain way, say, money order or check or through cash in person.
    10. Prove that you are not violating any privacy law. So send a copy of id or come in person.
    Compare this to- sign into provider website and click ‘download’.
    It’s like future healthcare scenario once reform kicks in. Theoritically everyone will be entitled to everything. Yet in reality there will be access and availability problems. Same probably applies for records where theoritically we all are entitled to our records. Just from my experiences of getting my records.
    The disruption is not patients having their data, but what they do once they own the data. As I have mentioned before, it is one step towrads patients owning responsibility of their treatment and health.
    bevMD, thanks for kind words. It nice to hear that, when you are an outsider to the industry.

  13. “The question simply is why can’t a care provider give his/her patient a copy of the patient’s records? Is that such an onerous request?”
    Mr. Bushkin, I am really not sure what you are talking about, and maybe you or others can help me understand. To my knowledge, patients are entitled by law to get chart copies (they certainly get them at all institutions where I worked). One practical problem is that at the very time of the visit, the dictation summarizing the visit is not yet done – dictating and proofreading usually takes at least 24-48 hrs in ambulatory care.
    I get the feeling that there is a lot of hot air here. I work in a highly educated university town in a HC system offering patients electronic chart review, in addition to the conventional option of patient chart review (get copies from med. records). I heard from medical records that all patient requests for changes to dictations need to be approved/corrected by the dictating provider (otherwise, the note will be just addended with the patient’s correction). Fair enough. There are certainly very many notes – mine included – that contain incorrect information, from various sources incl. the patient him/herself), and some misinformation may be (or may become) relevant. But I don’t think that patient driven corrections happen too often (the other day, I received a letter from a patient correcting 2 phonetic typos re. her social history, sthg like “he likes to bike” i/o “hike”. That was about it so far!)
    Until there are some studies (not only cherry picked anecdotes) suggesting acceptance and benefit of these innovations, let’s stay calm and reasonable. It may turn out that this kind of disruption is as disruptive to the practice of medicine as peapod was to grocery stores (disclaimer: Yes, I do think that fundamental change in the practice of medicine in the US is needed, but not necessarily this kind of change).

  14. Vikram C. and Dr. Walker are refreshing additions to our stable of commenters; welcome and thanks.

  15. Thanks Merle. I did go through the link provided. The questions asked arent’t directly about data- PHR, but about applications spinning around PHR such as online RX refill, doctor appointments etc. Still, I take it that interest is there, which is good.
    I agree, we should get a copy. Initially just a copy would do, it doesn’t have to be computable because I am not ready for managing my household health using an applications. And it brings in some security as well.
    Now other part is about the cost. Who defrays that? Let us understand that having it in website and available for downloading will cost a little bit of money. I doubt insurer will be inclined to pay for this paraphenalia.
    And lest I miss mentioning that, I am a big fan of second opinion. Since I happen to be Indian origin, I know that it’s a big industry there. My dad consults 3-4 doctors before he decides on what treatment he wants. Not sure how he comes to decisions. Doctors over there do not have website but provide copy for free, except basic photocopying cost. Many test labs do provide free computable results that can be downloaded same day we give samples. Privacy laws are there but not used in India. Just put in service name and last name and you can get someone’s results. No one died due to violation of privacy law, so no one cares.

  16. The past is the past; but going forward, we should collectively work towards a standardized data architecture for medical data using policy, practice standards, incentives, penalties, and other means. To my read of the current state of the HIT evolution in the US, the best way to approach this is through robust regional HIEs. National and international standards will continue to evolve (NHIN etc.), but regional efforts will look to these, yet remain responsive to local innovation as well as limitations. Regional HIEs further have the capability of pooling functionality into packages (akin to AOL and Netscape in the evolution of the internet; see prior Kibbe article and comments) that ensure immediate deliverables and utility whilst the ‘ideal’ is developing. Merely local HIEs have not been successful to my knowledge; and statewide HIEs or national approaches have not proven widely functional on the widespread concrete deliverables we all seem to need yet, either. At least at the regional level, too, skeptical patients and providers can have a real say in governance and data limits, too. But it is not acceptable to perpetuate a paper-based or non-standardized medical data infrastructure merely because the shift will be uncomfortable. If there are coherent, logical arguments for keeping it on paper – and keeping the data from flowing freely wherever the patient wants it to in real time, please provide such. If not, change is here. Primum non nocere – and lack of data / standardization / fluidity / access has caused much, much harm – and injustice / inequity.

  17. It’s not an onerous request at all. What is onerous is to request the records in a particular format.
    Please remember that most docs are still on paper. The minority that is already electronic, usually has most of the record in plain document format, with the bulk of it scanned in. During the majority of EHR implementations, the old charts are never scanned in in their entirety. Some have discrete data for some of the record, but not all. Very, very few can create a CCR/CCD or other XML format, and only for recent records.
    So if we were reasonable, we would ask for the Download button, but be realistic and understand that right now, it will most likely be PDF and most definitely it will be incomplete.

  18. Vikram,
    Here’s a link to the CA Healthcare Foundation study I referred to:
    You should read it. You’ll find it a bit more sophisticated than you have assumed. In fact, it is one of the more sophisticated and informative I’ve seen.
    The issue isn’t whether patients want to assume responsibility for documenting their care. Doctors must and will do it for their own purposes. The question simply is why can’t a care provider give his/her patient a copy of the patient’s records? Is that such an onerous request?

  19. I’ve been reading this thread with interest and I really appreciate some of the very thoughtful and interesting comments. I wanted to jump in on just a couple of points: patient demand and computable data.
    I think both of these boil down to a question of choice or preference. Many people do not want copies of the medical record data. That’s fine, of course. But it shouldn’t mean that the rest of us shouldn’t be able to get them.
    The question of format is similarly a question of preference and good practice suggests that you give consumers a choice of how they wish to receive information. My bank asks me if I want to receive statements in the mail, view them on the web or download them as Quicken or Money files. As a patient I should have a similar choice. While some people might prefer a written summary on paper or as a PDF file, I want my data in computable form because I want to run apps on top of them — apps that make sense of them and help me take action. I also want to mash up my medical record data with data I gather outside of my doctor visits — and I need computable data for that (or a whole lot of time and patience to key it in).
    So thanks Dave for your call to action. I look forward to seeing the DOWNLOAD button on my doc’s web site and I’d love to hear ideas on how to move that along.

  20. Just thinking about it from provider perspective. There is perfect antidote to ‘nothing about me without me’. ‘Everything about you will be just with you’. Ergo, patients fetch their records for every visit. Don’t expect physician office to keep historical records.
    So this study that Merle referred to, must have asked- ‘do you want copy of your records?’ The answer has to be overwhelmingly yes of course.
    Now it would be interesting it would instead asked-‘are you willing take reponsibility of documenting all your health records instead of the physician’s office?’.

  21. This is a very interesting topic and the sub-current is about patient-doctor relationship.
    The first fundamental question was, who owns the data. I think it’s agreed upon that patient owns the data. Though we need to figure out way to get that delivered to patient in cost effective way. And we know that not all are clamoring for data, but some are ferociously after it.
    The second and more fundamental question is, who is responsible for welfare of patients? We would all like to say, patients, of course. However, that is not the reality. Passive patients let physicians take ownership and I think physicians like it, as long as outcomes are good. Active patients try to retain ownership and is more interested in colloborative treatment than leasing out all responsibilities to physician.
    I feel part of active patient group. Now reading my lipid profile overnight may not help me much, but it is leads to me doing many other activities to treat my condition, many of which are complementary to doctor’s treatment. And yes, I do sometimes find mistakes in doctor office readings and notes.
    I agree that this group might be a little disruptive and irritating but I also think that this group is the best bet for physicians as far as outcomes are concerned. There is a valid concern about what the patients might do with themselves given their DIY zeal. Yet as Nate says about HSA consumers -just throw them onto it. Wisdom and knowledge will develop over few generations.
    I didn’t know that there were many active patient types out there. I don’t know this for fact but I would like to believe that HSA product has awakened patients to their responsibilities.

  22. MD as HELL,
    As long as you and other docs provide your patients with copies of their records, no one will care whether you are happy doing so. Just do it.
    I’d like to think you share my belief that you will be better able to treat your patients, avoid mistakes and coordinate their care with their other physicians if they make all their records available to you in an electronic instant. But if you don’t, that’s OK.
    But understand, that the very act of you and all other care providers giving patients copies of their records will unleash a torrent of changes that none of us can predict today. That’s the beauty and power of a disruptive innovation! It opens the door for bold new ideas, approaches and solutions!
    The key requirement for disruption is to meet a currently unmet need — just as Apple did with the iPod and others did with the cracking of the genetic code. These innovations unleashed waves and ripples that will reverberate for years.
    Apple has forever changed the way music is bought, sold and listened to. The consequences of cracking the genetic code will change the way you diagnose and treat patients, the way pharma develops and tests drugs, and the way accused criminals are found guilty or acquitted of crimes!
    It may sound crazy to put healthcare IT in the same category but I don’t think so. Improvements in healthcare IT can help providers avoid mistakes that kill, disable or sicken their patients rather than curing them (and will save $billions). It can enable chronically ill patients to record and transmit to you, their physician, important information about their bodily functions. It can remind patients to take their medications and report back to you that they did. It can provide data to researchers that will lead to new treatments, medications, and diagnostic tools.
    Sound like wild dreams, science fiction or fantasy? Sure. But these and/or many other changes are what disruptive innovation is all about! And I’d bet that what actually emerges will make these sound like kid stuff!

  23. Dave,
    I was a bit disappointed with your comment, but then it occurred to me that you may not understand how this blog works. Far be it from me to speak for Matthew, but whether he intended it or not, this is more of a community now, where people openly, and sometimes with gloves off, discuss their opinions. We very rarely agree on anything, but the value lies in listening patiently to others and refining your own thoughts as you respond. The folks here are extremely well read and educated and I suspect very few are commenting without a full understanding of the subject at hand. Sometimes a particular post is just a beginning and the commentary takes it into areas that the original poster never intended, but that’s how conversations usually develop. We have our fair share of shrill voices, but if you read with respect, you always find something worthwhile in almost every comment.
    As the original poster, there is no absolute duty to reply to comments. It’s just the polite thing to do. I think you missed the point.
    If you bother to look at Dr. Walker’s website, you’ll better understand what he says. As for myself, Dr. Walker’s comment made me realize something I didn’t grasp before. For me, that was good enough value from this thread, and ever so often I find other posts and comments like his which force me to reexamine my beliefs. You cannot however derive such value unless you read everybody’s words with the same respect and open mindedness that you hope they read your posts with.

  24. This is one of those wonderful posts where everyone brainstorms their data fantasies, gin up a warm feeling of empowerment and then leave feeling something has changed.
    The push for patients having all their records is nothing more than an attempt to intimidate docs. Big deal. Docs will adapt in a heartbeat, hopefully yours. The content of records will immediately change.
    You can have all the raw data you want, if you paid for it. Oops, you did not pay for it. Your insurance company did or the government did. They own it, you don’t. Better check with them.
    You will have all the images you want but the interpretation is proprietary, just like the example above with the EKGs. That is why people seek out the best doctors and best hospitals; because their proprietary brand of medicine is superior to another brand of medicine.
    My excellant care of a patient rarely is fully contained in a record. I assure you, when I err, it is not fully in a record either.
    So get over your record fetish.
    If this is still about healthcare, records are created for multiple reasons, only one of which is patient care. Providers also labor under burdensome and rediculous bureaucratic requirements created by government to assure accountability for Medicare payments. This massively decreases productivity to government levels as well as alowing errors in the record, since we have to recreate it all with each encounter. (We all know how productive and fast the government is.)
    Those of you with axes to grind, keep at it. Soon the ax will be ground to nothing. Hopefully you will feel better. You are only human.

  25. e-patient dave:
    Your response to serious and well thought-out remarks was so intemperate and rude as to throw into question the validity of anything you say.

  26. 3.c is a very powerful comment – easy for providers and insurance companies to understand. It also makes good business sense all around.
    Nothing about me without me.
    Love it!

  27. Dave,
    Please clarify your comments when you can; as for my posts above, they represent my heart, soul, professional calling, and more time and though than anyone would probably believe – not a casual rant or knee-jerk blog session. However, I understand the tendency toward frustration with these issues. The healthcare system is so broken, one becomes frustrated. Maybe we can all help sort these critical issues out using this great medium of communication.

  28. “I can’t believe people would disagree….when they don’t even know what it’s about”.
    That’s the problem, Dave,; I don’t understand your post as written.
    I have read Christensen’s book (at your behest) and know what the term means. I just need a real world example or vision of what this might look like.
    Just like sometimes patients don’t understand medical terms and docs have to explain it to them.
    But thanks for the tongue-lashing. We all need that at times. (:

  29. You guys crack me up… has this forum degenerated into exactly what Merle said, an ongoing kneejerk reflex circle? Dare I say a circle of kneejerks? (I dare not take THAT a step further.)
    Lisa, thanks for your supportive comment, but “disruptive” in the sense of industry evolution has nothing to do with revolution or emotional upset – Christensen has remarked that he wishes he’d used a different word because this one is so often understood.
    The phrase “DISRUPTIVELY NITPICK” similarly has no clue what “disruptive” means in technology evolution. Ignorance of this vital term in the history of innovation indicates exactly why this industry fails so abysmally to innovate: we-all here don’t even have a clue what innovation is about.
    I won’t even throw a helpful link-bone to y’all – go google “disruptive innovation” and educate yourselves. Then reread this post.
    I can’t believe people would disagree, in public comments on a major policy blog, with something when they don’t even know what it’s about.
    When I hear some original, informed, thoughtful thinking I’ll spend time coming up with responses. For now I’m busy.

  30. PSA,
    I’m sure there are compulsive patients who demand more attention than you think they require or deserve. But I suspect the largest number merely want their information for the reasons I described — and why should you deny them? After all, its their health that’s at stake.
    With regard to computerized health records being private and secure, I have to disagree with you. They most certainly can be. I know they aren’t in most existing care provider-focused systems but in our patient-focused MedKaz™ System, they are, and the patient controls who accesses them!
    I did not intend this to be a commercial for our personal health record system but it the only one I know that is secure and assures that records are private. You may ask how and why we can do so when others can’t and/or don’t. The answer is we have done precisely what e-patient Dave is calling for. We took off the blinders and have designed a disruptive system — combined with a disruptive business model — different from anything in the marketplace. We not only give patients control of their records, our system actually pays docs rather handsomely for cooperating! What other system does that?
    Smart Patient and bev M.D.,
    I don’t know whether computerized diagnosis will emerge any time soon, if ever, and I am not advocating that. Neither am I advocating third party interpretation of medical records.
    I merely want to give patients copies of all their medical records from all their providers so they can use them as they wish — whether merely to correct obvious mistakes, to better understand their health and/or illnesses, map a wellness program or, most importantly, to give them to their care providers thereby ensuring that the docs treating them can coordinate their treatment with that prescribed by others.

  31. Bev, I can guarantee that such industry will arise. It’s already “arising”…. That’s why I said that many people will get hurt and a few will get rich.
    None of us will probably be alive to see that far away future I was describing, but I assume it will work itself out in a satisfactory way.
    As to privacy, a very smart man said many years ago, Privacy is dead. Get over it.
    Just because you have a COPY of your records on a flash drive, it doesn’t mean that the same information is not residing in multiple other places on the Internet.
    We need legislation for the Internet age. Legislation which assumes that every piece of data on any individual is easily obtainable.

  32. I think Margalit may be looking a bit far into the future. (: But I like Dr. Walker’s post, directly from the front lines, and his points are well taken. The fact is, we could have had interoperable EMR’s long ago, just like a lot of delivery reforms could have been made long ago. And Merle, I really have no objection to patients having their data and your points are well taken also. I’d just like a glimpse into the future as to exactly how that might look first. (Your examples helped provide such a look.)
    For instance, God forbid there should arise a whole parasitic industry based on “helping” the patient interpret their data (for a subscription price, of course), or other unimaginable scams.

  33. Yeah, that’s right Gur-Arie, and Butskin, and Wolker, go tell Klepper to plug his wife’s symptoms in to a computer before the first operation for a magical internet cure. You guys are nuts.

  34. Dr. Walker, you have me convinced. I’ve been thinking about what you wrote for two hours now and I think you are right regarding the direction of where things are going. Even now there are new companies that will prescribe you meds and care plans based on online questionnaires. If patients could feed all their data into this type of software, you could have rooms full of allied health professionals overseeing the software and prescribing therapies. As the software gets better you can dispense with the allied health folks altogether. In parallel, home monitoring and sensor devices could gather all the objective data needed for the computer to make a diagnosis and provide treatment.
    Primary care medicine and internal medicine will become obsolete. You will only need surgeons and not too many of those either, because everybody will have a computerized medical station at home (or in the village center) that can do everything, even fixing lacerations and broken bones and who knows what else, like they do in StarTrek (I’m not being sarcastic).
    It’s going to take many decades, but I guess we get to be the generation that takes the first steps. And like always with first steps, many people will get hurt, a few will get rich and others will see their profession replaced by technology. It happened before and it will eventually happen to most of us. It’s called progress.

  35. Patients disruptively nitpick minutiae interfering with their care. The obsessive compulsive and control freaks believe they are saving their lives by studying the daily trends in their blood pressures. Merle, find a sweet nurse practicioner who will nold your hand and lead you through your glucose readings. Your records will never be private if they are computerized. Forget it.

  36. Propensity, what planet do you live on?
    Virtually every study of patient attitudes towards their medical records indicate they overwhelmingly want to have them and control who has access to them (for one of the most recent see the California Healthcare Foundation’s “Consumers and Health Information Technology: A National Survey, April 2010).
    Why do they want them? Not out of idle or morbid curiousity, and not because they will necessarily understand the clinical language.
    One reason is to ensure they are correct. Have your doctors ever mistakenly written that you have or had an illness that you, in fact, never had? Have they ever mis-located an illness, eg., mistakenly written that you had a problem with your right arm when it was your left? If you recall, last fall a cause celebre broke out in Boston when e-Patient Dave’s records uploaded to Google Health indicated he had had an aneurysm. Similarly, to my surprise, I found my own records indicated I had a history of asthma, hypertension and diabetes — none of which was correct. And why is this important? In an emergency, a doc seeing I had such conditions might deny me the most effective treatment/medication because it would conflict with one of these conditions. Such mistakes abound and patients want to be certain they are corrected. Is that unreasonable? And do you really believe they are too stupid to be able to identify such mistakes?
    Second, patients want their care providers to know what in fact is known about them so they can be assured their docs understand their conditions and can treat them appropriately. That’s why many patients carry their records to their care providers in folders, boxes, notebooks, etc. One friend of mine carried his in his briefcase which never left his side because he had a rare blood disease and feared that in an emergency he would die long before the ER docs would begin to understand the results of any blood tests they performed. In effect, these patients are helping their doctors coordinate their care — something today’s care provider-focused record systems, whether paper or EMRs, fail to do.
    A third reason is they want to know who accesses their records and want to control how their records and personal health information are used. Privacy is one of our rights and I, personally, don’t want you or anyone else violating mine irrespective of how righteous you think your motives are!

  37. Bev, Margalit, propensity, et al., you make good points. If I hold up a penny and I see a man’s face, you see a famous building – which of us is right? Both, to some degree – just from different sides. I start with the moral principle that the data legitimately belongs to the patient. As a family physician, I set a goal with each patient-physician interaction: I should never know more (in a practical sense) about this patient’s health status than they do as a result of the interaction. The primary reason a person comes to a doctor is for the following ‘equation’: their data (history, physical, tests) plus my expertise (training, skills) equals sound treatment plan. But my critical moment (which lit the fire I now have in my belly, and keeps me busy working on the HIT / EMR process etc. in too much of my spare time) came in 2005 when I read Oestby et al.’s article in Ann Fam Med (3:209-214, 2005) proving it is impossible to provide this ‘equation’ in today’s delivery system. In other words, at least for primary care, the physician’s attempt to supply the available standard of care is a failure despite best attempts of everybody involved; we ALWAYS cut corners. This is easy to see because the components of the above equation have changed in modern times – the traditional H&P interaction is much less a component of the data piece than tests and other data, and the physician-specific analytics also much less; and evidence-based algorithmic standards, computable features (eg., drug-drug interactions, lab trends, blood pressure trends, etc.) have increased. The injustice comes when the medical system admits it can’t adequately manage this new scenario, yet fails to standardize and make transferable the patient data and other process elements so that the patient can use other means of analysis that would be at their disposal if the data were computable and freed-up. The injustice comes when physicians are held to the standard of care (often enough by 9 people and an attorney) everyone should know they can’t deliver – resulting in much human suffering on both sides. The injustice comes when we have the technological capability to make much of healthcare delivery computable, which would enable millions of people in developing countries to get care – but they don’t, yet. It pains me that even patient history data has the potential to be standardized and computable (standardized interactive menu-driven review of systems, medication histories, family histories, surgery histories) and thus to streamline even the current ‘1.0’ version of the delivery system – but we still rely on face-to-face that are minimally standardized / reproducible / interoperable.
    Much of what I do every single work day in primary care practice could be done by a computer, or a well-trained nurse: refills, lab review, adjustments to algorithmic care plans, targeted patient education. If we could rework the delivery system towards enabling computers and nurses, mid-levels, and patients to do more, then we would solve a huge part of the delivery system crisis – and the provider shortage to boot. Automation and embracing the allied health approach would also enable higher-quality healthcare delivery in the developing world – as there will never, ever, ever be enough doctors to go around in those places, using the current care delivery model.
    This makes the current efforts to craft the HIT infrastructure not just a process / evolution – but rather, a cause and a struggle. We can’t afford the current system; despite a high standard of care unequaled worldwide, it is not consistently delivered, standardized, efficient, or cost-effective. It is the #1 drag on the economy, and Greece’s current horrors give us a taste of what will come here if we don’t face the problem of cost containment head-on. If a team of specifically-trained nurses at a help desk could do most of what I do in my clinic for a fraction of the cost – and probably get better outcomes – then I’m all for it. There will still be somewhere in the system for me, I’m not worried about that. Give them their data – in a computable, standardized format, in its entirety – and we all will be the better for it.
    Bev is right – part of the equation will be figuring out how to make a new system sustainable. My caveat is: first, we do the right thing. The right thing is obvious – release the data in a fully-useable format. The infrastructure will adapt. I don’t foresee a future world not needing pathologists; as long as there is a need, there will be a way to pay for it.

  38. The e-patient professor Jacob in our running group has a neurological condition. This e-patient followed the infamous e-patient Dave’s advice and carries the medical record and scans on a jump drive and was showing off the CT the head on the new I-Pad.
    There is a neurosurgeon in the midst who watched with interest this e-patient describe the findings. The e-patient was showing it upside down and mixed right and left.
    Yup, real important for e-patients to carry their scans. Besides, ask the tragically unfortunate Brian Klepper if he studied the medical records of his wife. e-patient Dave ought to stop making noise until there is scientific proof that his ideas are any more than folly.
    As for Merle Bushkin, few patients are interested in their records. When they are interested and read them, the usually inane questions about innocuous matters of variance serve to disrupt and distract. You will not live longer because you have a jump drive with your lipid profile that you study before bed every night.

  39. As one reads the responses to e-Patient Dave’s posting, it’s striking to note that virtually everyone is responding true to form, taking just the positions you would expect them to take. Not one of the regular THCB posters has removed his/her blinders.
    Dave just lobbed a bomb in our midst by saying the status quo MUST change and patients MUST be heard. Everyone tips their hat and then completely ignores what he said. Docs who like to play God along with others who think consumers are stupid or too incompetent to be trusted with their records, reassert these positions. Those who want everything available on the Internet, dismiss patient concerns about security and privacy as irrelevant, and advocate for Internet-accessible records. Etc., etc., etc.
    I suggest everyone listen up. Times not only ARE changing but HAVE changed — and this is only the beginning! Consumer interest in their care is rapidly growing and soon will become a tidal wave so I suggest you open your minds to bold new ideas, or you’ll be swept into irrelevancy! Take the blinders off.
    To consumers/patients interested in their health, these issues are real, not merely fodder for intellectual exercises. And if they are seriously ill, they certainly don’t want to wait for change/improvement until all the proponents of the status quo have debated the issues ad nauseum. By that time, it will be far too late to help them!
    Personally, I think Dave has it absolutely right and I thank him for calling it as he sees it.

  40. I agree with Wendell on where the biggest bang for the buck is residing as far as health is concerned, unfortunately I don’t see too many patient advocates raising hell because a portion of our taxes go to subsidize tobacco, and an even larger portion goes to subsidizing corn syrup and all sorts of other junk.
    As far as medical records are concerned, everybody should have access to all their records, as HIPAA mandates, and since we are increasingly communicating on the Internet, then the records should also be available on the Internet in real time to both patients and other providers per patient request, or as needed.
    What I find interesting is the new demand to have medical records available to patients in a “computable” format. How many folks know what a computable format is? Who is really driving this demand? Could it be that it is driven by corporations who think that the best way to get their hands on priceless data is through patients? After all very few doctors will be feeding medical records, which are supposed to be confidential, to for-profit data mining companies.
    So be it. If people want to transfer their “computable” data to a variety of non medical professionals in search of second opinions or miracles, this, I assume, is their prerogative. My suggestion would be that they read the fine print and not complain too loudly when they get bombarded with advertisements and solicitations of all sorts.
    To Bev’s point, patients should also be required to bear some of the costs for all this “computable” transfer of data. Whatever is there on the provider website is yours to print or download, just like your Bank website. When B of A agrees to transfer the entire history of your accounts to US Bank or an “innovative startup” that will fix your financial situation, in a computable format, for free, then we will know that data has been set free all across the globe.
    And I would also like to better understand Dr. Walker’s statement about “justice will be served, finally” when patients are allowed access to their data. I really don’t understand where the injustice is currently occurring.
    With all the hoopla about quality, I don’t think health care in the US is of low quality. It is obscenely expensive and it is not equitably distributed, but it is probably the best there is. Having computable data flowing through patients to non-medical agencies will neither make health care cheaper nor more available to poor people. And I will be extremely surprised (understatement) if the next big breakthrough in medicine comes from a PHR company.

  41. I missed the earlier postings in this series, but will check them out.
    Good points in this posting. I have pointed this out before and will again here since another commenter cites the issue: data will inevitably leak in many ways. A good case in point is the example the poster gives of uncleansed harddrives.
    My perspective however is – so what? Next to no one cares about anyone else’s health records. Unquestionably there are the more prurient than most among the population who will always look for personal data on someone prominent, but worrying excessively about the issue of data security and imposing exorbitant fines on those responsible for leakage only adds more to the already vast overspending in the healthcare system with next to no benefit to the population spending the money.
    Change in the healthcare system, i.e. improved quality and lower cost of delivery, would unquestionably occur were spending on care to behave like spending on other consumer goods. Therefore obviously the more segments of the delivery/financing system that can operate on a competitively determined basis, the better.
    Were all or or nearly all clinical data digitized routinely and were all data repositories linked adequately so the data exchange occurred more or less seamlessly (to use the frightfully overhyped word in marketing materials), then the effect of consumer decision-making would start to be felt on the supply side of medical services.
    I still think the mindset on the supply side of medical services is so unchangeable that the current group of physicians has to be retired and replaced by the next generation for there to be ubiquitous and productive presence and use of computer technology in medical services and therefore to start to force supply to adapt to consumer demand.
    In the meantime conscious, conscientious and intelligent use of administrative control is the way to better the service to patients and to lower costs.
    As propensity inadvertently suggests in his/her comment above, the biggest bang for the buck for reducing costs of medical service is publicity and other measures to make the mass of the population aware of the need for good nutrition and adequate exercise. Unfortunately that runs directly counter to the private interests of much of USA industry that makes its living from encouraging poor nutrition and inadequate exercise among the population.

  42. Most patients do not give a hoot about their data, they are overwhelmed with it, they do not want to see it, they rely on professionals to counsel them, and they do not have the education to become a quasi physician as some of you making comments appear to be. Most patients need a scale and a diet. You guys are smoking weed to think there is a need for what you propose. Suggest you read a blog or two earlier by B. Klepper who is suffering with life threatening illness.

  43. J. Stefan Walker;
    I would like to talk a little bit about second opinions in my specialty, pathology. There are definitely many times when they have saved lives (read Trisha Torrey’s story, a college classmate of mine). There are also times when a second opinion is reflexively requested by the patient on a routine obvious case of, say, breast cancer – when the patient, who of course is emotionally involved, does not want to believe the diagnosis and desperately seeks a different one. These requests currently require the pathologist to make new microscopic slides of the whole case (which may be up to 30 slides sometimes), and spend professional time reviewing them to ensure they are exactly the same as the originals. (To spend a little time on that, slides are microns-thick slices of tissue embedded in a paraffin block. Each time you cut further into the block, you get a slightly different slice, hence the potential for a change on the new slide). All of this activity: receiving the request, recutting, staining, labeling of the slides by the histology lab, review by the pathologist, mailing of the slides/report – is essentially non reimbursable, especially the professional part. We tried billing for it once and were roundly shouted down by the clinicians, whose patients were complaining b/c insurance didn’t pay.
    Of course, digital pathology will someday eliminate this problem, but I am sure it will cause others – equipment expenses, coordination of systems to ensure proper patient identification, etc.
    My only point is that, unlike lawyers, physicians do not/cannot bill for many of their activities. This has been shown in primary care also and in any other clinical specialty. To the extent that more of these activities are initiated by patients looking at their data, there will be more $$ and more lost time and more inefficiency and more of the things we do not want to see in medicine. See rbar’s comment for expansion upon this point.
    I am not questioning your right to your data, nor your right to a second opinion, nor to your doctor explaining to you what you are looking at. I am simply raising the practical consequences of such decisions and asking you, in participatory fashion, how can providers and patients work together to ameliorate these negatives?

  44. The patient owns her / his data – Period.  In reforming the healthcare system and advancing HIT infrastructure, we should look to the most fundamental axioms for guidance – this is one of them.  It should anger us, for example, that one of the many ways VA patients are disenfranchised from mainstream medicine is that their EMR is siloed.  It should anger us that our delivery system is flagrantly incapable of meeting the available standard of care.  As long as the individual patient’s complete EMR data is not available in it’s entirety at the point of care (it’s not really available until it’s standardized, and honing robust, interoperable patient data standards is our high calling right now), the patient is virtually powerless to do anything about it.  If the patient can be allowed practical access to her realtime data in standard format in her control, the healthcare system will be revolutionized – power will change hands completely – and justice will be served, finally.  A whole industry will form around second opinions and chronic care management – driven by patients, but also good docs who aren’t ashamed to admit they’re not supernatural beings.  Like the compelling ECG analytics method referenced in this piece, opening up the whole digital / standardized chart to patients – and any agents they choose – will usher in an incredible array of outcomes functionality.  This is an absolutely essential step in the delivery system we can finally be proud of and build on – a system, as Kibbe has elsewhere noted, that will extend its healing benefits internationally.  Bravo for the authors and those who are working to give patients absolute control of what is rightfully theirs.  We must not rest until that happens.

  45. I became a big fan of Clayton Christensen in the late 90’s and have adopted many of his principles in developing software solutions for healthcare. About ten years ago I stumbled into accreditation and from there into compliance, now HIPAA HITECH compliance. From my observation point data is so poorly protected that anyone wanting to disseminate it further should re-evaluate the current process. Safety and access are two sides of the same coin and until patients feel that their data is safe they aren’t going to feel good about it flying around the world.
    A small recent example; A small data security firm purchased five used copiers from a dealer and opened up the hard drives inside. Lo and behold gigabytes of PHI. This is just one small hole in a very leaky boat. People really need to pay attention to HIPAA HITECH compliance before they start handing out data.

  46. This feverish post rests on various myths, some of which are widespread, or at the very least resonate with some apparently motivated, resourceful and smart people, so that’s why it is worthwhile examining those:
    -Health information is tightly integrated with the provider.
    There is a kernel of truth to it – HIPA laws and slow communication technologies cause delays and visits with incomplete information. But a REASONABLE, CONSIDERATE physician does not act on incomplete information, unless it is an emergency. Or unless he/she is driven nuts by patients like Doc Searls (follow link in original post, he admits: “But that information came too late. I blame myself for that too, because I was in a rush to get the procedure out of the way before a month of long-planned travel.”) and who also does not explain for what symptoms/problems the initial MRI was done to begin with (it is possible that the initiation of this first test, like so many superfluous scans, was patient driven as well).
    -Patients will use their health data to their (or even ingeniously to everyone’s) advantage.
    That remains to be seen. Some blogs and other media like to ruminate stories how patient invention save the day. But you never hear about events suggesting the opposite, stories that happen on a daily basis, i.e. patients acting irrationally and/or to their disadvantage with health care data. As a side note, one should also consider that longer discussions with the health care provider may cost time, bringing up costs and/or worsening access. I am not saying it is not worth the time, I am just pointing out that patients processing a lot of information often require extra resources, and one should always ask whether extra ressources are well spent.
    -If you just through enough resources and mental effort at a condition, you will find a diagnosis and treatment offering cure or significant improvement. Unfortunately, that is often not the case: 1) There are still very many untreatable or marginally treatable conditions 2) More importantly, most studies dealing with the subject agree that 20-70% of physical complaints in office based practice will remain “medically unexplained” (and one can speculate where this symptoms come from – depression? anxiety? some other poorly defined CNS condition of unclear pathologic importance such as fibromyalgia?) … here is just one recent study: http://brain.oxfordjournals.org/cgi/content/abstract/132/10/2878
    But if you get your news from US media, watch Hollywood movies or “Mystery Diagnosis” on the discovery channel, you are bombarded with cherry picked information suggesting/supporting this very myth.
    I really had to smile about the EKG graphs (“don’t worry what the axes mean”). Is it possible that the geek is up to something big? It is possible, sure – why doesn’t he hook up with a motivated assistant professor in cardiology/electrophysiology?

  47. I looked over my e record at the hospital. There was so much useless garbage there that I vowed never to waste my time again. I will not disclose the vendor, but it is a popular one. That is why I found a seasoned clever creative physician and pay for the professional work. Dave, you must be smoking weed or are so arrogant that you think you know as much as a physician.

  48. A hospitalized patient should be able to review his own chart daily while in the hospital? – YES
    If he has an imaging test, he should be able to send the image elsewhere for an instant second opinion? – YES
    He should be able to follow his own potassium level daily directly from the lab,or his blood culture results? – YES
    Then how about when he leaves the hospital – should he have access to his PCP’s notes about his post-discharge visit in realtime? – YES
    My spouse had a bone marrow transplant. It was all outpatient. As we waited every day for 60 days we hooked up to the hospital’s guest network and amused ourselves. No reason we couldn’t log onto a web site and see how those white blood cells/red cells/platelets were doing. We had paper from every day’s tests, why not electronic copy?
    We have half a dozen disks with CT scans. Never sent one out for a second opinion but we did make a copy and give it to the Radiologist who lost the first copy that was sent to him from our home center. That disc meant more to us than anybody else.
    We followed those blood tests. Unlike some tests it wasn’t anything that he could improve with better behaviors, but we could anticipate when a red cell transfusion was coming and adjust our schedule for the longer infusion time.
    We have logged on and looked at patient summary sheets from visits when questions about after care or what we were supposed to do arose.
    Not every person with a complicated medical situation wants to get into their data/results. For every person who doesn’t there is likely a caregiver or loved one who does take an interest. If they can do a better job or nag their loved one into attending to their health it’s all worth it.

  49. I think what Dave is doing is worthwhile. People should have full access to their medical records. They should be able to see their charts, download copies or just pertinent bits and transfer the records to a new provider if they need to. Anything less is ridiculous.
    However, I don’t think people should be forced to manage their own medical records. Most folks have no interest in doing that and most folks are ill equipped to do that. Let’s just remember that at any given time most people are pretty healthy and are not about to chase medical records for no clear benefit to themselves. I view this task as belonging to the Medical Home. We also need to remember that medical records are legal documents and providers are required by law to maintain the originals for several years, depending on the State they’re in.
    I do agree with Vikram that the big bang for the data buck is in clinical research. That sort of data doesn’t come one patient at a time; it comes in big huge chunks straight from the provider and is usually deidentified.
    I just hope we can keep profiteering out of medical data aggregation so we can derive the obvious benefits. Not holding my breath on this one, since most of the drive to get the data out of individual provider “silos” is coming from private industry hoping to make mega bucks from this incredibly rich new source of “consumer” data.
    Medical innovation will come from credible clinical research sources. Sales & marketing innovation will come from all other quarters.
    We desperately need legislation here. I would suggest 20 years hard labor for the CEO and $1 million per record fine for any company convicted of re-identifying medical data. This should do the job….

  50. Dave, Thanks for the great post on this topic! I also think that providers sharing data with patients (and patients sharing data with providers) is a key element to improving health and care in the US.
    To the “If we build it will they come?” question, the most compelling answer that I know of is the adoption rate by patients of Kaiser’s patient portal. After only three years (in 2009), they had about 50% of all patients who have Internet Access become regular users of Kaiser’s first generation portal (2.86 million patients of Kaiser’s total patient population of 8.7 million). The penetration level was about 60% women and 40% men, and about 50% across age, location (e.g. California and Georgia) and ethnicity groups. Only teenagers had significantly lower adoption rates; they may be immortal. What do patients like most in this first generation tool? – Getting labs, managing meds, e-dialogue with providers (which reduced office visits 7%, and phone calls by 14%), refills, making appointments, past visit information. This is only the first generation portal; they are planning to push the adoption rate up with some careful listening to consumers and providers to form new features and tune existing ones. The various value propositions in RWJ’s Project HealthDesign is also a place to go for a bundle of concrete examples of consumer use (and generation of) health information that aids consumers, their lay caregivers, and professional healthcare providers.
    As I was reviewing the new Beacon Community awardees project summaries (http://www.hhs.gov/news/press/2010pres/05/20100504a.html) , I noticed that quite a few projects involved driving data to patients as a high-level priority. Perhaps some of these beacons will act as labs for the next phase of innovation generation and testing of consumer data usage models.
    The post mentioned the various Stage objectives in the Meaningful Use of EHR program that compel data sharing with patients. These objectives will likely affect how/when MU program participants (i.e. Medicaid and Medicare providers) start these practices. To complement these MU objectives, the HITECH Act section 13405(e) requires the timely “transmission” of electronic form data to patients or patient-designated entities in electronic form and restricts any fee to the unit labor costs for responding to the patient request. The section was added as a specific way in which providers meet their more general obligation under HIPAA to provide the “designated record set” to patients upon request. This HITECH requirement applies to all HIPAA-covered electronic health record maintainers (not just MU program participants) and applies now -though related regulations are pending.

  51. “As far as patients are concerned, do you see, patients clamoring for same?”
    Vikram, the answer is yes, as evidenced by this article (ePatient Dave), as evidenced by Regina Holliday and her mural “21 days and 73 cents a page” and countless other stories of patients getting disruptive, literally clamoring for their data. Have you seen the new Dennis Quaid documentary “Chasing Zero…?” It’s been airing on the Discovery network. More disruptive patients clamoring for data.

  52. Dave,
    Thanks for the two articles, that are closed to my heart- patient driven disruptive innovation and patient data. Unfortunately, the two do not intersect and the reason for that is two pillar groups- patients and physicians, haven’t changed, don’t intend to change as of now and don’t have any pent up needs apart from money.
    Individually both things are good to have.
    Data availability is good. We sometimes hear nice anecdotal story about someone skiing in Colorado needing blood transfusion and NHIN and EMRs come to rescue.
    However, look into physician behavior a little bit. Do they really attach importance to historical data older than a year or two? Do they attach importance to data collected by different physician and out of area lab and take decisions on basis of that? There is no doubt there will be some help and value in seeing past information, but the physicians as I know are most heavily influenced by current status and test results. With historical data we would have more tests being ordered than less to satisfy patient’s penchant to ensure that none of the ghosts from past are coming back. And then physician would like to order based on current status. If the information improves outcome for majority in a way that outweighs cost, then more power to it.
    As far as patients are concerned, do you see, patients clamoring for same? What do they plan to do with it?
    As far as I know I would like to have my data but my physician office charges me $25 for photocopying few pages. I doubt they are ready to sacrifice one of the easy revenue stream.
    My opinion on data has been about it’s usefulness in making medical decision at community and national level.
    Do we know if bacterias and viruses are getting more resistant to anti-biotics, is there any outbreak of new kind of tests and diseases in an area, how is the new flu travelling etc
    We really pay a huge price for throwing away the precious health data. We end up having the focussed research and trials for extended period which jack up the prices for drugs and equipment used and the usefulness thereof is not guaranteed in real life.
    I believe that all roads from data land lead to outcome and we don’t have a lot of consensus around that area. Still, I agree, lets collect data and get it in hands of innovators and physicians and not underwriters.

  53. Dave; I agree with all you are saying, but I am a concrete thinker. Give me an example of a hypothetical patient and tell me how and when and in what form they should be given their data, so I can understand better what this may mean and where it can go.
    For instance, a hospitalized patient should be able to review his own chart daily while in the hospital? If he has an imaging test, he should be able to send the image elsewhere for an instant second opinion? He should be able to follow his own potassium level daily directly from the lab,or his blood culture results?
    Then how about when he leaves the hospital – should he have access to his PCP’s notes about his post-discharge visit in realtime?
    I just need a “story” to visualize this,thanks.

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