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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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vishalSteve DownsMD as HELLprimary care docNick Dawson Recent comment authors
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vishal
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vishal

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… Read more »

Merle Bushkin
Guest

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… Read more »

james walker
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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… Read more »

Vikram C
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Vikram C

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.
regards,
Vikram

Merle Bushkin
Guest

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… Read more »

Margalit Gur-Arie
Guest

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.… Read more »

Merle Bushkin
Guest

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… Read more »

Margalit Gur-Arie
Guest

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.… Read more »

Merle Bushkin
Guest

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… Read more »

james walker
Guest

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.… Read more »

Merle Bushkin
Guest

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… Read more »

Vikram C
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Vikram C

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… Read more »

rbar
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rbar

“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… Read more »

bev M.D.
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bev M.D.

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

Vikram C
Guest
Vikram C

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… Read more »