In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at USNews saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up.
I was aghast. There were good editorial reasons to not sell out to this particular company. But what shocked me was that the publisher did not recognize the value of the school rankings data, laboriously collected and coded each year. That was the gold mine we were just beginning to explore.
What was truly crazy was that the deal included the rights to all education content — the database, the archives, and anything produced in the future — in perpetuity. USNews.com would no longer have the right to display its own content about education, nor generate tools fueled by the school information database. Only the print magazine would be allowed to publish the rankings. To those who didn’t understand how the internet was disrupting publishing, this seemed smart. Newsstand sales of the magazine and annual guides were still a dominant source of revenue. To geeks like me and my team, it seemed insane to lock the magazine into a model that denied the value of data.
So what happened? The deal was halted. I quit. The start-up’s IPO fizzled. The print magazine folded. Only the USNews.com website remains, fueled in part by revenue generated by the school rankings and the consumer-facing database tools we envisioned back in the day.
When I shared this story with e-Patient Dave, he said, “The publisher thought they were in the print magazine industry, in the same way the railroads famously thought they were in the railroad business. The railroads learned the hard way that what customers needed was transportation, and magazines have learned that what people need is the information.”
I think, unfortunately, that a similar misconception is clouding the conversation about electronic health records. To me, the parallel to the dot-com bubble is eerie. The EHR boom is in full swing, money seems to be gushing out of Washington, and some people are cashing in.
The most popular EHRs are closed systems. In best case scenarios, people can look, but they can’t touch, correct, or create tools with the data. To take one example, the standard contract for Epic is so restrictive that Paul Levy has described their customers as victims of Stockholm syndrome. John Halamka has compared its sweep to the Invasion of the Body Snatchers. (For a less dramatic comparison of major EHR vendors, read John Moore’s rundown.)
Time is running out for anyone to have influence over these choices: office-based physicians and hospitals are implementing EHR systems at a fast clip. As Moore told me, “Putting in these big enterprise IT systems is a little like pouring concrete — once it sets, it is nearly impossible to chip out.”
Maybe health care leaders can learn from all the other industries that have gone before them into the disruption mill. Maybe they will pause to consider: What is the value of the data we generate? What is the potential for good if we are able to share that data with other health care organizations? What if we could escape the EHR trap and create a system that welcomes innovation? How might we build in participation from all stakeholders, including patients and their families? What business are we in, anyway?
I’m hopeful that the upcoming Health Datapalooza will provide some inspiration for those health care organizations who have not yet made their choice. Because only people who do not understand the value of data would sign it away.
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For more on where we stand with EHR adoption, see:
“Docs get nerdy: Electronic health record use has doubled since 2007” – VentureBeat post
“Trends in Electronic Health Record System Use Among Office-based Physicians: United States, 2007–2012” – Centers for Disease Control (PDF)
“Health Information Technology in the United States: Better Information Systems for Better Care, 2013” – Robert Wood Johnson Foundation (PDF)
Yes, yes, yes. It’s understandable and easy for observers to look at what’s happening now (railroads, printing magazines) and sanely conclude that that is the point. But as Levitt said in the epicly famous article you linked to, “Marketing Myopia,” the activity itself is not the point: to understand the present and the future, you need to understand how value is arising.
e-Patients.net founder “Doc Tom” Ferguson knew in the 1980s that in medicine, the ability to create value depends on having information. In the 90s he saw that the web gave patients access to literature and to other patients; today, the big shift is access to our own frickin’ medical records.
Blue Button is wonderfully, healthfully disruptive in that it unbundles a wonderful, healthfully valuable asset: my medical data. Woohoo! A family’s ability to maintain its own health becomes nurtured by a new nutrient!
The value is in the data. As the US C.T.O. Todd Park said at the first Health Datapalooze, “Data Liberación!”
One more point: who gets to say what’s valuable and what isn’t?
IMO, value needs to be defined from the consumer’s perspective… the person who ultimately has the need.
Two decades after “Marketing Myopia” pointed executives to the issue of consumer need, the Lean and Six Sigma movements provided emphatic evidence that the driving force is the same in quality improvement: when push comes to shove, between engineers and consumers, what leads to success (and profit) is to be driven by consumer wants.
Today, three decades further on, product development is iterative: you show people the nascent product early – as soon as there’s a minimum viable product, because the penalty for guessing wrong on consumer value is steep.
Couldn’t be more timely with this piece!
Dave’s comment is exactly true. A physician friend frequently vents to me about EHR and the implementation issues he faces in his practice. At the basic levels: his specialty portal doesn’t open properly on the ipad he was told to use to be compliant, the meetings are all about using a new system – administratively. They had user meetings and admin meetings and task list meetings and records meetings. They put everyone through a series of meetings about billing in the new system and another set of meetings about “new liabilities” from being electronically based (basically a “you will be jailed and sued if…[insert scenario that existed in paper form already], because of the EHRs and Obamacare” meeting).
I was the first person to talk to him about the data opps behind the system and ask him what they were doing to leverage it — gave a few examples that Farzad once shared with me. His jaw hit the floor. I mentioned a few off the top of my head I could see being helpful for his specialty practice.
He felt cheated, I have to assume. He went back and mentioned everything to the C-suite at the hospital and his practice partners. They wanted to explore options. The vendor in play responded that they “don’t support that, only software.” The practice still hopes to identify ways to unlock those data-tunities. My hope is that it restores some enjoyment to clinical work and empowers the team.
Their relationship on this powerful EHR adventure was with someone who saw their role as a software service, not a data discovery service and (even worse) not mission-driven toward health improvement.
Susannah, thanks –yet another startlingly prescient piece from you. I couldn’t agree more: Take back the records! Take back the bills! Take back the information!
For all the money that’s been spent to solve this problem, the data is still by and large locked away from those who need it most. And a lot of that money is being used to perpetuate that.
Dave and I were talking the other day about how social movements gather steam, in connection with the Society for Participatory Medicine and #YesAllWomen. Could we in the participatory medicine movement perhaps be near a tipping point now — or can we see that tipping point from here?
Thanks, Jeanne!
I spent much of yesterday talking with a Swedish journalist who is visiting the U.S. to try to better understand the patient engagement movement. As I described its history, choosing to start with the Cystic Fibrosis Foundation in the 1950s; through Weight Watchers in the 60s; Our Bodies, Our Selves in the 70s; ACT-UP in the 80s; and then the advent of the internet in the 90s, I found myself going back and forth between optimism and pessimism, between “yeah, this is a deep, strong tide” and “dang, what do we have to show for it all?”
It was a wonderful opportunity to step back from my daily work as a cultural observer and try to explain things to someone wholly outside our country’s struggles with health care.
So, to your question: Do I see a tipping point? I see many. But I see an equal number of pitfalls and road blocks. I’m enough of an internet veteran that I am realistic about false promises of software vendors (and the like). But I’m enough of an optimist to keep hoping we can swerve and duck and make good choices.
What do you see?
Crazy story about US News, Susannah. You must feel like Bill Murray in Groundhog Day.
Until I became a patient (and was prescribed two chest CTs by two different hospital systems within weeks of each other), I’d always assumed my data was transportable and available. To a denizen of our networked, digitized world, it wasn’t obvious that these efficiencies don’t extend to healthcare.
In my perfect world, my data travel would live in the cloud and travel with me. The key to unlock it would be a “health card.”
For example, before I slide into the CT, the tech would swipe my card to confirm my identity and the script for the CT. Upon acknowledging both, the card would unlock and update my cloud-based EHR (with a tiny sliver of data, like a CPT/ICD code and an NPI). My EHR would return an alert if the CT was a duplicate or failed whatever means testing currently surround CTs.
Later, when I go to the pharmacy to pick up my prescription, I’d hand the pharmacist my “health card,” which would again confirm my identity and the order, and again update my cloud-based EHR with the NDC or whatever the pill identifier is, and alert the pharmacist if the medication is counter indicated.
We have the building blocks to make something like this in a weekend (well, maybe not the whole thing!). But who would adopt it? And who would corner us in a dark alley to prevent it’s adoption?
So it’s a dream, probably only possible in Singapore. Or maybe Kaiser.
I hope to see you at Datapalooza…I’ll be demoing “My Cloud-Based EHR” or MCBEHR (pronounced McKyber) 🙂
Thanks, Natasha! I LOL’d at the Bill Murray reference since just this week someone tweeted that he is the personification of a sigh. That is me some days, for sure. But then again, there is so much reason to put your shoulders back and, as my friend Alex Drane says, run chest out for the tape, like your crossing the finish line at the Olympics!
I like your vision, btw — let’s compare notes after the Palooza to see what elements are going to come true first.
Very nicely done post. The “pouring concrete” example is so apropos. The whole EHR push reflects once again that systems and change are so reflect the values of those in control. In the case of EHRs, since the push is being led by the gov’t, it should be no surprise that the roll-out represents the interests/values of the gov’t (safety, compliance, adoption) and at times not so much the interests of patients (usability, insight, relevance). Appreciate your call to arms to try to right the ship.
In a tweet today you said
How about a lifeline instead? “Gimme my DaM data” (Data About Me). When a crisis hits, optimizing my health requires maximum portability of the data about me, and Blue Button is becoming the circulatory system by which it can move.
Can “data liberación” be the lifeline, the escape clause?
I love that! A lifeline is much more portable than a lifeboat — and that’s what people need (and even expect!).
Susannah, another insightful piece. It will be through recognizing the nature and motivations of the (EMR) marketplace that we will understand what and how we move the system to more innovation. I remain optimistic that there are options for patients and it is through that lens that we find the leverage and disruption that the healthcare system so desperately needs. See you at Datapalooza. I’m there on Monday at the ONC booth to share our work on helping patients match to clinical trials with use of their Blue Button Plus data.
Yes! I’ll see you there. High hopes for finding some gems.
Tom, I love the work that ONC is doing to match patient data with clinical trial availability. It’s a great start!
Sorry, meant LILLY, not ONC. Regardless, nice work with the clinical trial matching activity. I know it is just the start.
Interesting examples, but I think you missed finishing the comparison. You said railroads weren’t in the railroad business, but the transportation business. The paper wasn’t in the newspaper business, but was in the information business. If EHR isn’t in the EHR business, what business is it in?
I need to think about this question more, but here are my gut reactions: government regulation business, medical reimbursement business. Sad to think about. I’d be interested to hear your thoughts.
You got me! I didn’t finish, mostly because I wasn’t sure what the exact answer is — and because it is, to some degree, an open question. Let’s all think out loud about it together.
It used to be in the billing business, but what we need now is not only a comprehensive longitudinal record of info gathered both inside an outside the clinic, but the forecast, based on population data that can be derived between the two.
If Apple can predict heart attacks with an iWatch (as is rumored) and Samsung wants all your data http://readwrite.com/2014/05/28/samsung-health-data-platform We may be seeing the new EHRs, designed for people and health, not billing.
Highly recommend Hernando de Soto’s “Mystery of Capital” (also a phenomenal speaker, BTW). The book is not about data, per se, but about how, to Dave’s point, value is created. To summarize one of his main point: it’s not about the thing, but the trusted description of the thing.
Accessing, filtering, processing, exchanging and acting upon data always has been and always will be the source of most if not all value, and a competitive advantage. Accessing is always a good place to start. It is the new oil, a basic resource that drives other industries.
John and Leonard, NOW you’re into the JUICY stuff. Spot on.
Are we talking about the healthcare provider – the purchaser of the EMR system? Or are we talking about the consumer/patient – “the ultimate stakeholder,” as I like to put it? I understand ecosystems and subsystems and all that – some contexts are highly localized one-to-one and others are more global. Personally, I think healthcare is not just “business rugby” where a few noses get broken here and there – people’s lives are at stake if the system is sub-optimized.
You can say “Consumers (of health IT, i.e. providers) don’t need EMR systems, they need information.” That’s vastly different from “sick people don’t need doctors and portals, they need effective medical care – they need to get better.” (I’m not advocating that view – it’s just an example.)
In any case it seems clear to me that the whole reason we need (anyone needs) health data is to enable better consumer health. And I’ll say, tentatively: anything that interferes with that is perverse.
Thoughts?
Dave, Hah! I guess we’re on the same page. I said almost the same thing as your last line of comment in the #hitsm chat this morning my tweet:
“All of this chat (on health IT) goes to focusing on the job to be done and aligning the system ($) in the direction of health. The rest is noise. #hitsm”
Susannah, great post. I think you are spot on re: the problems with EHRs within the traditional healthcare space. But just as the EDGAR filing requirements in the mid-90s forced US publicly traded companies to file their annual and periodic financial reports electronically (and the need for central stockbrokers diminished), so the requirements from the HITECH Act have forced healthcare entities to digitize health. The lifeline I believe that we may see is the development of the healthcare equivalent to the eTrade platform — an interface that relies on the HITECH mandate that patients have the right to an electronic copy of their health record, and thus creates the platform to self-assess and self-aggregate not only the data from the EHR, but also all of the amazing data that is being generated in the world of consumer-driven healthcare. I come from a long background of health data privacy and security and have battled HIPAA and all its issues since its inception. “Privacy” continues to be used as an excuse to prevent health data from flowing and I fear that you’ll hear a lot of that at HDPalooza. But the privacy that matters to patients and consumers isn’t represented by the regulations that block data. Our research and that of research by organizations like C-Change and National Health Council shows that patients want their data used and disclosed to enable quality of care and potentially life-saving research. But keep an eye on the FTC too. They are nervous that health data outside of doctors, hospitals and pharmacies is not covered by HIPAA and they are assessing whether to push for separate regulation. Privacy is important, but not at the expense of treatment and research. We need innovators to lend their voice to regulatory and privacy debate!
Of course data has value and sharing it with patients is a given but that really isn’t the goal for most of us who have actually worked in health care and health IT.
The reality is that over 80% of all hospitals already have an EHR in place (and remember HIMSS celebrated their 50th anniversary last year so this really isn’t all that new) and although the largest EHR vendor Epic is proprietary so is Apple’s operating system so don’t trip up over that..
The flaw is very very simple.. what is the business model is “exchanging data” If a hospital makes a profit by running a CT scan guess what? They don’t care that you had it done a week ago..
I once went with a friend who was seen in an urgent care facility and had an EKG done and was told she had to go to the ER that was a few miles away affilated with the urgent care facility.. She took her EKG record with her but they immeditely told her that they couldn’t accept it due to liability reasons and she had to have another one (about an hour later then the first)..
It really sadly has nothing to do with technology or standards or data or interoperability and everything to do with the business case.. If you could make more money by trading data vs creating data over night you would have the free flow.
One last thought – I adore Dave and know everyone on the blue button team at ONC but and giving patients there data is a cul de sac, a dead end and not the solution or even a stop towards one and in fact is a canard.
The average person has a 8th grade reading level and a 5th grade medical literacy level.. the goal isn’t give patients their data or have them “receive” from the ability medical system but to “shift the role” to participant – not deliver static data which is outdated the moment is is created. My meme isn’t “give me my damn data” it is ” “recognize that patients are key members of the care team” (of course everyone on the team gets the same data at the same time) and using data to make decisions is the goal not numbers and data.
Sherry – YES.
And Susannah, unluckily those of us working in healthcare who realize the immense value of data (for helping to create health) are rarely the decision-makers re: EHR implementation.
We have lots of great ideas that our soon-to-be-implemented EHR preclude. No way to have patient-reported symptoms, behavioral screens, etc, entered in; no way to import data from apps; no way to communicate with other hospitals’ systems; etc (without paying a *lot* of money and going through multiple layers of bureaucracy).
Part of this is because the EHR vendors are protective. Part of it is because hospitals are protective. They recognize the value – but unluckily aren’t willing to use it for the greater good.
(Do you know how much $$ it costs me to do research with big data sets that should, ostensibly, be free?!)
Megan, well said. And your parenthetical re: cost of access to big data for research being too high is spot on and such a huge problem for all the health researchers in academic research institutions too.
Thanks Stan. Full disclosure, I am one of those academic health ctr physician-researchers ;).
I don’t know about all EMRs, but Epic has published an endpoint for PGD (patient generated data). The problem is that they will only accept a static, web view, meaning no downstream utility.
The smarter move is being played by AllScripts and others, who are exposing an API to permit the flow of PGD data into the record. So far, outflows, particularly to patients, are limited to useless info (why would I ever enter a portal to check the status of my DOB?)
Depending on which system your practice uses, you should be able to at least “see” PGD. If you don’t, wrote to Judy. As she said, Epic only builds what their customers demand.
Sherry, I understand and agree in part. But, in reality, the data coming out of the EHRs will not be going to a cul-de-sac but into a repository where it can be much more easily used for research at the patient’s direction and where decision support tools can be applied by the patient and patient advocacy groups to aid in their treatment. This is not going to be easy, but the trend is likely irreversible and just might help move large institutions to help folks like you take meaningful actions.
btw, re EMR data: I haven’t been paying enough attention, but did I hear something months ago saying that EPIC purchasers (or all EMR users) sign something saying that *the vendor* owns the data??
(I think it was on the Chilmark blog – maybe it’s one of his links above that I didn’t click…)
Susannah – You did a great job (once again) of convening a great comment thread. As a confessed congenital optimist, I’ll give my optimistic view of how positive developments are little-noticed, as they were with epic shifts that tore apart the newspaper industry (local digital media was where I spent much of my detour away from healthcare). Big orgs tend to demand our attention but it’s the smaller, but high growth, orgs who will ultimately overwhelm sclerotic orgs using sclerotic technology while disruptors use tech of this millenium/decade — with data frequently a core asset they know how to maximize its value.
Health system CEOs would be well advised to study what newspaper industry leaders did (or perhaps more appropriately, didn’t do) when faced with a dramatic industry change. Turn back the clock 15 years and the following dynamics were present (noting parallels w/ health systems):
1. Newspaper leaders knew full well that dramatic change was underway and even made some tactical investments. However they didn’t fundamentally rethink their model.
2. Newspapers were comfortable as monopoly or oligopoly businesses allowing for plodding decisions. Their IT infrastructure mirrored the plodding pace with expensive and rigid technology architectures.
3. Newspaper companies bought up other newspaper chains and took on huge debt.
4. Owning printing presses was a de facto barrier to entry allowing newspapers unfettered dominance.
Before they knew it, owning massive capital assets and the accompanying crushing debt became unsustainable. The capital barrier to entry transformed into a boat anchor while nimble competition dismissed as ankle-biters created a death-by-a-thousand-paper-cuts dynamic. Competitively, newspaper companies worried only about other media companies or even Microsoft, but their undoing was driven by a combination of craigslist, monster.com, cars.com, eBay, espn.com and countless other marketing substitutes for their advertisers. In addition, there were easier ways to get news than newspapers. Generally, the newspaper’s digital groups were either marginalized or unbearably shackled so that the encumbered digital leaders left to join more aggressive competitors. The enabling technology to reinvent local media didn’t come from legacy IT vendors who’d long sold to newspaper companies, but from “no name” technologies such as WordPress, Drupal and the like.
The parallels with health systems today are clear. Consider the present dynamics:
1. Health systems have been aggressively gobbling up other healthcare providers and frequently taking on debt to finance the growth. Concurrently, health systems often have capital project plans that equal their annual revenues even though no expert believes the answer to healthcare’s hyperinflation is building more buildings. Consider the duplicative $430 million being spent in San Diego to build two identical facilities just a few miles apart as Exhibit A of the problem. Studying other countries that shifted from a “sick care” to a “health care” system, more than half of their hospitals closed. They simply weren’t needed or weren’t appropriate.
2. Until recently, complex medical procedures always took place in an acute care hospital setting. Increasingly they are being done more and more in specialty facilities that can do a high volume of particular procedures at a significantly lower cost.
3. Just as newspapers were implementing multimillion dollar IT systems while nimble competitors were using low and no cost software to disrupt the local media landscape, health systems are similarly implementing complex (customizable but then rigid post-deployment) systems to automate the complexity necessary in a multi-faceted system. Meanwhile, disruptive innovators are implementing new models at a fraction of the cost and time. For example, it’s well understood that a healthy primary care system is the key to increasing the health of a population. Imagine if a fraction of the billions being spent by mission-driven, non-profit health systems on automating complexity was redirected towards the reinvigoration of primary care. They’d further their mission and lower their costs. Of course, they’d likely see revenues drop but presumably maximizing revenues isn’t the mission of a non-profit.
4. The plodding pace and scale of innovation at most health systems isn’t up to the enormity of the task. The vast majority of health system innovation teams are constrained by how they have to fit innovation into an existing infrastructure. That approach rarely, if ever, leads to breakthroughs, as its true intent is to make tweaks to a current system rather than a rethink from the ground up.
Death by a thousand papercuts undid newspapers. Likewise, there are an array of innovators carving out chunk by chunk of the healthcare pie. Just as it was easy to dismiss Google, craiglist, ebay, groupon, foursquare, facebook, etc. so too are the Iora Healths, Caremores, HealthCare Partners, Edison Health, One Medical, Surgery Center OK, Paladina Health, etc. but their value proposition is compelling. All of those players are deploying healthIT in a radically different way than incumbents. Those orgs and their supporting technology take it for granted that patients are a core member of the care team, have access to their data and generally are using IT for competitive advantage. As these orgs naturally become national scale, what seems like a local oligopoly that would be unchallenged forever are suddenly challenged by aggressive tech-enabled enterprises. For example, Edison Health should make every hospital realize that they are no longer just competing with local market competition. Incumbent health systems still have an opportunity to lead but the window is narrower than they believe.
This is already a tome so if you want more, I wrote some on how agile systems will reshape the competitive landscape at http://www.forbes.com/sites/davechase/2012/11/29/healthcares-age-of-agility-will-shuffle-market-leadership/
Chase!! I didn’t know about your newspaper experiences – we have much to discuss!
Great comment. More later.
Yes, I spent a lot of time in the hyperlocal media starting with Sidewalk/Citysearch. We tried to partner with newspaper companies and wanted to help them make the transition to digital. Instead arrogance and dirty tricks were their main behaviors, unfortunately. I’ve felt for the many good people harmed in newspapers by the dramatic changes that their “leaders” dismissed until it was too late. It was a measure of karmic justice for the “leaders” who I can’t say a lot positive about given what I observed.
Should be required reading for hospital execs. Well said, Dave.
I just ran across another of Brian @Ahier’s superb, in-depth posts about the status of getting value from data … at least *businesses* getting value from the data. I hadn’t realized that Gartner Group has been avidly applying their famous Hype Cycle analysis to understand the status of many data applications in health.
From April 17: The Health Data Analytics Hype Cycle, about the third annual think tank sponsored by Dell. Excerpt:
I urge you to look through the Gartner graph (Feb 2014) if you’re at all wondering whether there’s *commercial* value in all that data. See also the few short comments – including wondering why Gartner thinks PHRs will be “obsolete before plateau.” (They think *portals* are maturing, but PHRs are dead.)
Which raises the question: value to whom?? I’m guessing Gartner thinks about the (money) value of data to industry, which of course is a completely different subject from value to the ultimate stakeholder, the patient & family.
Here’s the Chilmark (John Moore) post from November I recalled: Whose data is it anyway? I’ve just added a comment asking if what his text suggests is still true – it’s awaiting moderation. Anyone else know?
The post starts (emphasis added):
It’s not clear whether “lays claim to” means “takes exclusive ownership of” or “can use.” In a comment he continues
But in another comment:
The post ends with this warning, which I’m starting to think might be a good idea:
Dave,
It’s a bit hard to determine without the full context of the agreement, and these agreements run quite a spectrum depending on whether the EHR is an installed system or a hosted system, or running as Software-as-a-service, but most likely the vendors here are Business Associates (under HIPAA) of the doctor/institution. If that is the case then the vendors would have access to patient data on behalf of the doctor, but the use of the full data would be limited to acting on behalf of the doctor. The vendor could de-identify the data and use it for any purpose it would like outside of HIPAA’s reach. But a uni-lateral contract provision that provides an EHR vendor “ownership” or even “access” to patient data for the vendor’s independent purposes, would be violative of the HIPAA privacy regulations without consent of the patient. There are circumstances where the EHR vendor could receive access to the patient data without being a business associate and without a patient authorization, but the use of the data in that circumstance would have to be confined to the vendors treatment of the patient (meaning the vendor was also a healthcare provider in some manner) or to the doctor’s treatment of the patient (which again, limits the the use of the data). So, bottomline, HIPAA places use limitations on the data in this circumstance and a contract between parties cannot alter those limitations. Privacy laws, by the way, famously do not assign ownership rights.
Thanks, Stan.
Susannah, I hope we can persuade Chilmark John to come weigh in on this! I’ll ping him on Twitter.
Thanks, all, for setting a new land-speed record in terms of insight shared in blog comments!
To stir the pot once more: Naveen Rao of Chilmark Research posted an excellent essay on the perverse situation he faced recently when trying to access his own health data:
Data, Data, Everywhere, Not Liquid Enough to Use
Susannah, This is such a helpful blog string for me, thank you for starting it up. I agree completely with the Chilmark folks and it matches my own experience as we explore these issues at IU. I also tend to align with John More, like i’m sure most posting here do too — counting on market forces to pressure the data out. But working against us is quite a bit of potential liability for institutions who make the data “too” easy to get to. Liability in potential HIPAA reg violations, lawsuits for breaches, and general authentication problems that “data minimization” — the hallmark of HIPAA disclosure — poses. But I am hopeful.
The Health Datapalooza is over and I can happily report that there WERE examples of people throwing out lifelines and even building lifeboats.
WAMU’s Kojo Nnamdi show broadcast live from the event, including a segment about self-tracking and clinical integration, featuring Kavita Patel, MD; Adriana Lukas; and me. We touched briefly on the news that Apple’s HealthKit will integrate with the Mayo Clinic’s EMR system, which is run by Epic. I also talked more about it in a video interview posted by Alex Howard.
Finally, I posted my remarks on Day 2 and started a list of recaps. See:
Health Datapalooza turns 5 (going on 15)
I’d love for us to keep talking about these issues, either here or on the new post — or elsewhere! Let me know if you see good conversations happening about health data.
Susannah,
I am an internist in a town of about 50K in Montana. Through a lot of luck and some hard work, have found a system that works exceptionally well. I am of the opinion, with the appropriate implementation, harnessing the ethereal quality of the EHR, which can change second by second, is possible.
Three critical components have to coalesce, at least in a small office setting. A healthCRM that can feed accurate, pertinent information preferably before but during visit. An EHR designed to be intuitive to use and visually cohesive, easy to project on a large mirrored screen to be viewed and understood by the patient at the visit. The third component is one tech savvy nurse with a double screen computer at her workstation command center controlling the converging, EHR, healthCRM (efaxes/portal), telephone, schedule, and scanner.
I am of the same opinion of General Sherman, he favored a light and efficient staff, and on some days a private practice office is not unlike a war zone. With the appropriate tools in place and a singular staff, the technology can be harnessed so the EHR can not only be a platform to document but preferably learn from. It is this visual process with the EHR at the doctor visit, that is imperative to make available to the patient that, I think is missing from most patient encounters today.
Every doctor today could arrange his hardware to make this happen for less than the cost of a desktop computer, and this approach I call #ProjectedEHR on twitter.
I am also of the opinion we have to move beyond MU and Pay4Performance, and this process negates most if not all of the tremendously inefficient steps involved in care trying to get to the same place I have been able to arrive, going through the front door instead of the back.
Thank you very much for your article, and please don’t hesitate to contact me with any questions.
Jim
Susannah,
I wrote the above piece rather quickly yesterday and wanted to add an additional thought or two. I think one of the most remarkable and unexpected observations time and again with multiple patients I have noted, relates to your comment in your article in paragraph seven. “The EHR’s are closed systems, people can look but can’t touch, correct or create…”
When a patient and I work our way through their chart, I have a system of going through first with observing graphed out data points of their weights, blood pressure, BMI over time, observation only, then review their past medical history. The information has been retained from previous visits, and we go through line by line. During this process we will update any new hospital stays, surgeries and at times make corrections. As I am typing on my chromebook the words appear on the mirrored large wall mounted TV screen. The patient will observe and help me edit and modify their own chart. It is this process, that seems to be very empowering to the patient directing my fingers to get it right confirmed by their sight, as reflected on the large screen.
After doing this a year, I am still humbled and honored to take on what in description sounds like a menial task but in reality has had a very therapeutic and bonding effect, I think mainly because of the time we take together to get the information of their care, in their chart done right.
I do not want to sound overly sentimental, but there is something to this that I cannot quite put my finger on, and have never witnessed before until I started this over a year ago.
One thing for sure, the large TV will never end up in my exercise room in the basement, where I initially figured it might reside thinking this venture would be a failure.
Thanks again for your time and discussion regarding this topic.
Note: I recently reposted this at the top of my blog and a new conversation began:
https://susannahfox.com/2015/04/15/the-value-of-data/#comment-66419