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Is HITECH Working? #5: “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation.


by Dave deBronkart (e-PatientDave), Vince Kuraitis, and David C. Kibbe

So far 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

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On April 28th, 2010 at 8:53 pm, Pete said:

This is a very interesting article. There are tremendous opportunities for health care quality improvement that can be gained through better understanding of an individual’s data.

One caution: the data deluge offers tremendous opportunity, but with the danger of expensive false positives. Retrospective analysis offers evidence of correlation only. Reviewing the data will only tell us the things that happen together, not why they happen or how to prevent them. To truly advance our understanding, we will need to develop an understanding of these correlations and test them to understand causal relationships.

This takes us to the revolution in the science of medicine we now find ourselves in the middle of: the genetic/molecular medicine revolution. Cellular mechanisms of disease are often a function of molecular biology, and we are increasingly finding that diseases we classify as one are merely the phenotypic manifestation of a family of pathologies.

Just as increasingly complex computer systems are now progressively more accessible to regular people, a pill designed through an understanding of molecular medicine that cures one patient’s cancer may be no better than a placebo for another. A respected neurologist sent me today the results of a patient’s genetic screening that was unintelligible to any but an expert geneticist.

Are we designing medical data systems for yesterday’s medicine? Gene therapy has already generated successes. Molecular medicine can cure some cancers. How many EMR systems can store a genome? How many EMR systems can trigger alerts from that genome? How can we teach patients to understand these issues? What will patients do with their data when that data includes a genome? When their physicians’ recommendations are derived from that genome?

On April 29th, 2010 at 5:47 am, Mark Spohr said:

This is a brilliant analysis of the problems and the potential of the HITECH act. It clearly shows the potential of the act to give patients control of their data and also the potential power of that data to improve patient care.
Since it is profoundly disruptive, it will be opposed by powerful forces. Control of the data is control of the patient. However, the HITECH act is very clear that patients must be given their data. We just need to build systems to allow patients to collect and control that data. This will be no small task but it will be immensely rewarding.

On April 29th, 2010 at 9:21 am, e-Patient Dave said:

Pete, here’s an ignorant question: what’s the obstacle to adding genomic information to someone’s EMR record?

On April 29th, 2010 at 10:14 am, Vince Kuraitis said:

Pete, your cautions are noted and are certainly valid. That said, there are many companies working to expand 1) computer processing power 2) data storage, and 3) bandwidth needed to make EHRs capable of integrating and analyzing genomic data.

Mark, thanks for your good words. You captured the thesis of our article in a couple of sentences. Agree — no small task, but immensely rewarding.

On April 29th, 2010 at 10:48 am, Sherry Reynolds said:

Most people don’t realize but one of the major vendors – Epic will have 25% of all doctors on their electronic medical system when all of their current implementations are completed.

When we implented this system at Group Health we gave the 580,000 members (patients) access to their EHR BEFORE the providers and as a result over 50% of all members use the EHR system (highest rates in the US) to get labs, set visit summary notes, make appts, communicate with their doctors and even write to their own charts (via email).

Over 30% of all visits are now being done via email and telephone encounters.. The challenge is how do we duplicate this model for providers who aren’t on salary? Perhaps the primary care medical home model is one option in which providers are paid to care for patients vs for encounters or procedures.

I included a link to a demo of the system in the website link.

If we asked every Epic provider to simply open up the API (yes it requies support to sign people up) to patients. overnight we would have 25% of all patients with access to their medical records.. That is a tipping point.

On April 29th, 2010 at 11:07 am, Gregg Masters said:

More good work Vince. I might add to the ‘patient as platform’ thread a post offered quite some time ago, ‘I Will License or Lease My Health Information To Providers’ which seems to have made it to the margins of this conversation: http://2healthguru.wordpress.com/2009/03/26/i-will-license-or-lease-my-health-information-to-providers/

I continue to feel this recognition is central to the paradigm shift away from mere incremental tinkering within a dysfunctional system; or industry gestalt populated by an interlocking series of business models collectively orchestrating ‘institutionalized malpractice’ via performance optimization under existing incentives.

Continued kudos for this series of posts!

On April 29th, 2010 at 2:22 pm, Steve Downs said:

Dave, Vince and David,

Thanks for a very thoughtful post. I’m a firm believer that it’s an important and potentially disruptive (in the best sense) step to liberate people’s data from the systems that hold it in. I’d be interested in hearing your thoughts on how to operationalize “gimme my damn data!” What’s the very specific ask you could give every healthcare organization that would enable you to track how many organizations, representing how many people, had complied.

On April 29th, 2010 at 3:38 pm, Raymond Carter said:

Really, really excellent stuff. Reminds me why I like to read what you guys write. A propos of your theme, I chose my new doctor 18 months ago in part because he uses NPs for a lot of his primary care work and has patient email. But I had my routine blood test months ago, and I don’t have the results because I keep forgetting to ask for them. (And because the practice is not a patient-centered medical home, I might add.) But why should that have to be on me? Why shouldn’t I get the results at the same time my doctor does? Or, to quote a phrase, GIVE ME THE RAW DATA!

On April 29th, 2010 at 4:36 pm, SR said:

I have a new plan.. . No funding, no new legislation.. if we are being billed for a service then we get the data.. – we paid for it – its ours.. Give it to me now!

(BTW – I have an individual health insurance policy at a cost of $640 a month so I really do pay for it)

On April 29th, 2010 at 8:35 pm, Margalit Gur-Arie said:

Here is your raw data:

Complete Blood Count (CBC) with differential
Test Results Result Units Reference Interval
White Blood Count 1.5 L x 103/mm3 5.0-10.0
Red Blood Count 3.50 L x 106/mm3 4.1-5.3
Hemoglobin 10.8 L g/dL 12.0-18.0
Hematocrit 31.1 L % 37.0-52.0
Platelets 302 x 103/mm3 150-400
Polys (neutrophils) 23 L % 45-76
Lymphs 68 H % 17-44
Monocytes 7 % 3-10
Eos 2 % 0-4
Basos 0.6 % 0.2
Polys (absolute) .34 L x 103/mm3 1.8-7.8
Lymphs (absolute) 1.0 x 103/mm3 0.7-4.5
Monocytes (absolute) 0.1 x 103/mm3 0.1-1.0
Eos (absolute) 0.1 x 103/mm3 0.0-0.4
Basos (absolute) 0.0 x 103/mm3 0.0-0.2

What is a 74 year old lady in Joplin, MO supposed to do now?

P.S. – I support complete access to data, completely :-), but it’s not nearly enough…..

On April 29th, 2010 at 8:53 pm, e-Patient Dave said:

What a pleasure to see you here, Margalit.

As someone who stared at a few of those screens a few years ago, then asked OTHER people (savvy relatives) to interpret, I know what you mean.

I can’t speak for others, but for my own part, I’m not saying I’ll parse that stuff myself. I’m saying I’m sick & tired of the slow rate of development of useful patient-level tools inside the establishment, so I want the data to be accessible by people who can do smart stuff with it faster than has been happening.

Sorta like my friend Dorron’s EKG graphs above. I’m certain the raw data would mean zippo to me; and in fact the data apparently doesn’t convey anything to the docs who look at it. But his sneaky analysis (whatever it is) finds something that the raw data alone doesn’t show.

IOW, yeah, it’s not nearly enough. BUT IT’S A FRICKIN REQUIRED FIRST STEP, I assert. Without it, no innovation.

On April 29th, 2010 at 9:42 pm, Mark Spohr said:

Margalit, good to hear from you.
I don’t think the object is to have the 74 year old lady do her own diagnosis. Rather, the point is that the 74 year old lady can take her data to whatever health provider she wants to get her diagnosis. In addition she can use the data for community or specialized application review.
(BTW, this 74 year old lady is anemic with abnormal WBC values. She should see the doctor of her choice ASAP.)

On April 29th, 2010 at 10:26 pm, Margalit Gur-Arie said:

Howdy Dave and Mark,
Great talking to you both. I don’t know what you had for breakfast, Dave, when you wrote this article, but I will be having the same :-)

Yes, I agree, data should be free and I actually would take it one step further and suggest that the Medical Record is the patient’s Property and should be treated as such. Legally.

I’ll be sure to tell the lady to make an appointment… :-)

On April 29th, 2010 at 11:18 pm, e-Patient Dave said:

Oh, hot diggety – Doc posted about this whole thing, particularly nuances of “consumer” vs “patient.” His closing line introduces a gem from a colleague:

“For more along these lines, follow Adriana Lukas here, where (among other things), she has MINT, which stands for My Information Not Theirs.”

I can hear it now: “Are you in MINT condition?” Love it!

On April 29th, 2010 at 11:24 pm, e-Patient Dave said:
On May 2nd, 2010 at 2:03 pm, e-Patient Dave said:


Due to an apparent email hiccup, I only now got email notification of your 4/29 comment. Apologies – I remember sitting near you a year ago this month on my first-ever trip to DC for HIT policy. (What a ride THIS has been.)

Re a specific ask: I’m happy to learn more but at present I don’t think I know enough to give educated advice.

Having said that, here’s an uninformed draft:

First define “comply.” There’s no point shoveling data at people who don’t want it.

Second, we’d need to flesh out exactly how much people are supposed to get. Pete Schmidt of Parkinsons Foundation has been talking about 40GB of genome data, and I’m even more certain not everyone wants that. But – billing data in human readable form? Lab data? Visit notes? Scan images (my personal favorite), but in full original res? etc.

Third, if we want to track compliance reliably, we could consider a 100% automated approach: the request *comes in* through a tracking system. Web, or SMS (“text GimmeData to AF4Q”), or 800 number? Need to work it out, including how someone would reliably identify themselves…that SMS example was pro forma of course.

I suggest SMS because of Pew’s data saying the digital divide disappears when you include smartphones.

This is one of those “don’t let perfection be the enemy of progress” things. I suspect significant behavioral change among providers will result from knowing requests are being forwarded by someone who’s tracking them, so they really need to get it in gear.

Then we need to work out how to confirm that the pt got what they wanted.

Forgive me if this isn’t at all the direction you’re asking about. Try again here, or drop me a note.

btw, somehow I only recently learned of Aligning Forces for Quality. I’m on a panel at the 5/13 annual meeting and I’m thrilled to learn that Boston’s getting on board.

I have the excellent 29 page progress report AF4Q recently published but I can’t find it on the site – if you have a URL I’m sure many here would like it.

On May 2nd, 2010 at 8:49 pm, Sherry said:

Dave – it is always exciting to see other actual patients learning about quality and patient safety..I was the only consumer to sit on our state hospital patient safety committee for a few years but was too disruptive when I suggested that they track MRSA across the jail , EMR and hospital systems.

Steve.. – the ask is very simple.. If you have or implement an EMR give your patients real time access to their lab and imagining results, medications, orders after visits summaries etc, at the same time that providers get it.. Remember 1 in 4 docs use the same system and this is built into it.

Margalit Gur-Arie you give patients both the raw data as well as links or educational material so that they don’t call their daughters up with every little aberration in their results. Places like kaiser with millions of patients have demonstrated how to do this. Take a look at this demo of the patient portal at GHC for an example
http://www.ghc.org/public/cddemo/member/MyGHTour.jhtml;jsessionid=QG4LUCSHRFJOTJCISQ3SHPQ of what we have been doing for over five years now

It is great that so many people who are new to health IT are becoming interested. Our real challenge is getting the success stories out there and building on them. We aren’t asking for something new but what millions of people already get from their providers.

On May 5th, 2010 at 9:14 pm, Margalit Gur-Arie said:

Sherry, that’s as nice a patient portal as I have ever seen (and I’ve seen many). Congratulations.

That is exactly what I think people need (and want). The raw data approach, I assume, is for exporting the data to some other software somewhere on the Internet, just because their own provider doesn’t have a proper Patient Portal.
I just think that every provider should have such portal, instead of forcing people to manipulate raw data. That was the point I was trying to make.

On May 7th, 2010 at 9:03 am, Steve Downs said:

Sherry and Margalit,

I think the kinds of portals that places like Group Health are terrific and I’m pretty sure there’s research or at least market data that suggests that people really enjoy the tight integration with their providers so they can take advantage of transactional services, email contacts, etc.

Where the portals fall short (at least for now), in my opinion, is in the ability to customize or add value to them through third-party apps. The tools people need to translate medical record data into something actionable are highly personal and highly varied. For example, I wouldn’t expect Group Health to offer translation engines that support 100+ languages, but if the data were released into something like HealthVault, then 100+ translators could emerge in the marketplace a la the iPhone app experience. Perhaps the path is to encourage Epic and other EMR/portal vendors to open up APIs for 3rd party development?

On May 13th, 2010 at 11:04 am, e-Patient Dave said:

Steve, I don’t know why we’re so lucky that your comments get caught in our spam filter, but we apologize! Please drop us a note next time you post so we can extract you.

I couldn’t agree more about an open API. Encouraging innovation is the way to go. Last week I got my first demo of EPIC’s “Lucy” chart integrator, which allows importing data from other systems as well as from multiple EPICs. Huzzah!

Part of me is starting to think that personal health data is so essential to someone’s health that there ought to be a legal responsibility NOT to hold it captive, but to make it available to anyone else the patient (& proxies) want. Any thoughts on that?

On May 13th, 2010 at 11:12 am, Vince Kuraitis said:

Steve, your initial question got me thinking and my juices flowing. Dave, your last comment on making data available to others at request of the patient goes to access and control.

It’s not possible to change the system overnight so that 100% of patient data is available 100% of the time…

So how do we begin to prioritize? Once you understand the opportunity for patient driven disruptive innovation, how do you break it down?
* what subsets of data provide the most value?
* what subsets of data will be most easily available electronically?
* what subsets of data will be most useful in engaging/motivating patients?
* etc.

At this point the questions become more obvious than the answers.

Several other countries (e.g, UK, Sweden, Denmark, Singapore) have developed “Summary Care Records” or similar as a first step in providing patients with electronic data. UK rollout has been problematic but seems to be going well in other countries. There are lessons to learn here.

On May 13th, 2010 at 11:52 am, Sherry Reynolds said:

Most of the existing large vendors generate “after visit summaries” and there have been years of discussions about CCR and CCD.

What I would love to see is something akin to how I exchange contact information with other smart phone users. I simply pick which fields I want to share and tap the phone to send it to them. The patient is the hub.

BTW – This direct from provider to patient to provider exchange of healthcare data isn’t meant to replace the large complex systems that occur within hospitals but is more akin to the direct provider to patient conversations that happen now (ie verbally).

On May 13th, 2010 at 12:54 pm, Steve Downs said:


I think the legal right is established by HIPAA — the issue is then format. The discussion of this post on THCB acknowledges that providers will have to crawl before they walk and walk before they run — so downloading computable data won’t happen for everyone right away. And Meaningful Use will presumably drive what providers will need to do in this regard. The trick, I think, is coming up with solutions that are easy for providers to implement and then incentivizing them to adopt them sooner rather than later through MU.

Vince and Sherry,

I’ve always been unclear whether it’s a question of some data are harder to share than others or just that the process of exporting the data in a standard format and keeping them in sync is hard. I’ve been impressed by how easily my Keas account downloaded my Google Health data and gets updated whenever there’s a change at Google. If only my provider could do the same with Google. Maybe if my data in Google were more voluminous or complex the task would be harder and there would be a need for prioritizing fields. I’m curious what people think.

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