Struggling to Understand or Data Does Not Equal Empowerment

Recently upon leaving my doctor’s office I was presented with a print-out of my visit summary. Knowing I worked it the HIT space my doctor proudly stated that this was one the ways that they planned to meet one of the menu objectives of Stage One meaningful use (MU). This is great I thought, until I began looking over that visit summary.

A significant portion of the summary listed the basics such as who I was, why I paid them a visit etc., all pretty boiler plate – nothing new. Then I turned the page to see the lab results of the routine blood-work – YIKES! nothing but acronyms, values and acceptable ranges. I think I was able to decipher about 10% of those lab results and I work in this industry! I can only imagine how difficult and mind-numbing these figures may appear to an “ordinary” patient/consumer.

So seeing some out of range values I began asking my doctor:

What does this acronym stand? Why is this out of range? Is this something I need to worry about?

Being the great doctor that he is, he took the time to explain my results (some of those out of range values are the result of meds) but also expressed a certain level of frustration stating: “I’m not a big fan of passing this information on to a patient for I worry that they won’t understand results such as these and then I need to take time out to walk the patient through their results which can be quite time consuming. Is this another contributor to physician burnout I wondered?

Now I am all for patient/consumer empowerment and do believe that providing patient’s access to their personal health information (PHI) as a critical component of such empowerment. But does providing a patient a visit summary really empower them or does it simply make them confused (as I was) and resigned or worse endanger?

Stage 2 meaningful use rules released last week state that an eligible physician or hospital will be required to:

Use Certified EHR Technology to identify patient-specific education resources and provide those resources to the patient.

But what will that “patient-specific education resource” look like? Will it solve the problem I encountered?

I want more than a generic here is what these type of acronyms and values mean that litter the internet. I want personalization. I want a system that will take my lab results, my problem list, match it up with my meds, allergies etc. and provide me with personalized knowledge of what these results mean to me and my future health. I then want to be provided suggestions as to how to improve those values? This is what I see as true patient/consumer empowerment.

Unfortunately, what I have actually experienced as a result of this grand HITECH effort under Stage One falls far short of empowerment, if anything, it is closer to disempowerment.

Getting a bunch of data in a visit summary without putting it into context is not meaningful, it is meaningless.

My hope is that there are some novel, creative solutions now being developed that will leverage the new concept in Stage Two, the Base EHR, and provide a module that automatically digs into a patient’s PHI and presents the patient with an empowering visit summary. This is one of the ultimate intents of the HITECH Act, I now want to see it happen.

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31 thoughts on “Struggling to Understand or Data Does Not Equal Empowerment

    • Sadly Steve, it occurred at one of the more renowned Boston-based healthcare institutions. I actually felt bad for my doctor for he wants to do the right thing, but this does create an added burden and one that will not be easily measure or rewarded.

  1. Great post John.

    Your experience definitely highlights how we as software vendors can sometimes get caught up in just complying with guidelines that we forget about the rest of the user experience. Over time, the smart vendors will realize this gap and rush to fill it. Those that don’t will likely not survive.

    Hopefully EHR vendors will follow the same maturity pattern as those in the banking and telco sectors. I remember those old bank-books that showed your account transactions with all the 3 letter codes that represented the types of transactions. It was a chore to figure out what those meant. Same with the early detailed bills on cell phones (CXL = local call…really?!). Now my bank sends me this lovely report of my complete financial picture. It shows my mortgage, my accounts, my 401Ks – all using easy to understand graphs, charts and tables. I hope we can learn from these other industries and make EHR user experiences better faster.

    • Yes, that is my hope as well Colin and as Dave points out, Goetz of Wired had just such an example. I saw him present it at MIT, it was nicely done.

  2. Yes, of course: as I tweeted from my phone, data doesn’t equal empowerment – nor, if we climb the DIKW ladder, does information, knowledge or even wisdom.

    But as I said, that was before I got online to read this post. Now I’ll guess that you’re saying data doesn’t equal knowledge, and sometimes like this it doesn’t even equal information. Absolutely true dat!

    Lacking specifics, I’ll still go out on several limbs:

    – I’d bet my bottom dollar that the almost useless printout you got was a negotiated first step: we’ve all heard how the vendors scream BLOODY murder about being forced to dispense ANYthing, with some professional associations close behind: “It’s too hard! We can’t do that, that fast!” Compromise (I’m guessing): “Okay, dump out dumb stuff for now.”

    – Re the unintelligibility and “I’m not a big fan of this” – I imagine you’ve seen the TED Talk that Wired editor Thomas Goetz did about the similar-sounding printouts his lab gave him, and how he asked Wired’s artists to redesign it to be *like the graphical representations we get today from financial analysts.* Check it out:
    http://www.ted.com/talks/thomas_goetz_it_s_time_to_redesign_medical_data.html

    Note: that TED talk was filmed 22 months ago – I wonder if the Epics of the world are working to implement that idea. (I know some providers do display values that way, but I don’t remember which ones.) My bet: HA: it is to laugh.:-) But I’d love to be disillusioned!

    Finally, imagine if we can build a juicy ecosystem of *open* lab data visualization tools – scan in that page of crap (or upload a digital version) and it generates an intelligible Goetz graph! Who’s up for that?? Open source hackers, anyone?

    I especially love the idea of that kind of tool being a redirect in a Direct workflow, via OAuth (like your handy login widget for comments here): “Yo, Direct: send this pile of crud to my PrettyGoetzifier account, and tell it to send the result to my PHR, along with the (very) raw original data.”

    Why not? I wouldn’t bet a penny on Big Iron getting it done, but I would bet it could be done at a Health 2.0 Hackathon, pretty darn quick.

    Want it?

    Heck, Expensify can scan cash register receipts – take a pic with your smartphone, and it’ll supposedly extract the merchant and prices. (I haven’t used that $feature.)

    – Longest limb I’ll go out on: I’m hoping (betting, mildly) that as civilians get their hands on this stuff, and ask a pile of reasonable questions to the doc’s office, we’ll see a *market* for better lab data visualization tools, a la Goetz, and maybe practices will buy it as an add-on. Maybe.

    Glad you asked? :-)

    p.s. For more on my thoughts about this, see my column in the February SGIM Forum’s debate on whether lab results should be released to patients (PDF): http://www.sgim.org/userfiles/file/Feb2012-05.pdf (The whole issue, with others in that debate, is here http://www.sgim.org/userfiles/file/Feb2012Web.pdf

    • I knew I would get a thoughtful response from you Dave, thus the tweet in your direction.

      Have seen Goetz’s presentation and lab data visualization which was quite nice. Have also seen more than enough websites that provide an explanation of lab values. What I seek though is an expression of those lab values in the context of MY health. That personalized view that will educate me, empower me, a view that is elusive today.

      Do like the idea of a hackathon to tackle the problem – definitely something to ponder for last Friday at the Rock Health event, Dr. Halamka got up and told the crowd that the silos of data in healthcare were coming down creating new opportunities for innovators. I look forward to seeing what those innovators create.

  3. John, this is a key reason that I’m convinced (not a surprise) that ultimately we need ecosystems like the one that HealthVault enables. It’s silly to ask every vendor to create or buy educational materials — it should be *fine* for them to just deliver “the facts” … and then OTHERS can provide tools to help patients (and others) make the best use of those facts.

    For example, Lab Tracker by Health Nexxus is an HealthVault-enabled iOS app that lets you graph and trend results over time AND has great integration of education materials to explain what your labs mean. So if your doc was sending data to HV, you’d have a great resource without him having to do it himself (or through his specific vendor).

    Just makes sense! But unfortunately it’s a long process to get people to where they “get it” — usually takes an experience like yours; so thanks for posting it.

    —S

    • Couldn’t agree more Sean as it does seem a little crazy to have every physician stand-up their own patient portal and provide their own set of patient educational materials via some new add-on module to their base EHR. Will ONC allow an exception to the rule if a patient requests a publish/subscribe model to their personal health ecosystem such as HealthVault and moves forward on their own?

    • I’m clickin’ the invisible Like button on this:

      “It’s silly to ask every vendor to create or buy educational materials — it should be *fine* for them to just deliver “the facts” … and then OTHERS can provide tools to help patients (and others) make the best use of those facts.”

      Yes, yes, yes. Let a thousand innovators’ seedlings sprout, and let the world decide which ones are most likeable!

      Data Liberacion!

  4. Hi John,

    Great post. I’ve admired your HIE posts for years. Nice to see you’re also tied to the end user experience as well.

    I’d add this entry to your blog, but there’s a product plug at the bottom and I don’t think that’s appropriate for blogs (or is it?).

    Anyway, I’d say at least two factors are at play — depth of EMR adoption and Meaningful Use.

    Historically, patient portals and communiques have been relegated to a later phase of EMR adoption. So many EMR vendors focused on improving modules involved in early phases (med orders, lab results review, phone notes, …..), the improvements their users demanded of them. Given it’s late phase adoption within a practice, patient involvement is somewhat less evolved, even with the mature EMR vendors.

    The second factor is Meaningful Use, which purposefully left “usability” out of its requirements — it was considered too subjective. Users suffer as vendors struggle to attain Meaningful Use functionality, without the all-too-important time and iteration required to make a product delightful to the users. Hopefully, natural market pressures will force usability improvements or wean out the less useful products.

    Having said all that, we’re tickled to have a solution in place for the problem you highlight — patient lab reporting. “Patient-friendly” lab results are in production today at a large number of our sites.

    Best regards,

    – Pat

    Pat Wolfram
    Ignis Systems
    888-806-0309 x502 (o)
    971-255-9282 (c)
    pat.wolfram@ignissystems.com
    http://www.ignissystems.com

    [cid:image006.jpg@01CD853A.422B3E20]
    Orders Made Easy

    • Thanks for chiming in Pat on the subject at hand. Agree in large part to your two factors but I would add a third, physician reluctance to share PHI in the first place. In my experience with the medical profession, there is a certain amount of let’s not question the expert. Now doctors are extremely well-trained, intelligent and most often truly dedicated to their work. But they are not infallible, they are human. They need to be questioned on occasion and giving patients access to their PHI naturally raises questions. THis is more of a cultural issue that will take time to address (culture trumps tech every time).

      Now I’d like to know more about your ability to produce patient-friendly lab results. Do you actually put those results in context with a patient’s given medical history, medications they are on etc. Is it personalized? This is what I seek, something that understands me and educates me on MY health status.

  5. I hear you too, a cross walk (data term) to kind of fix that up and the HL7 guys are much more of an expert than me in that area, although years back I created a couple of them when integrating lab results when I was back writing. Like Sean said though having a link to interpret some of this is valuable. As busy as doctors are with their own software and other systems they may be using at a hospital, they don’t have a lot of time either.

    Sometimes charting the results to show at a glance what normal ranges are is a big help so at least at a glance you can see where certain results might be out of those ranges and of course that’s what any person would gravitate to look up first. The algorithms give you the data but like you said not in a format that is useful without explanation. Most doctors don’t use all the features in their record system either, like maybe about 65% and I might be high at that guess. Bottom line is that we are still humans and no matter how much data is put in front of you, the level of discussion and relating human to human has to be there. You might like this post about the Institute of Humanism Research in Medicine where they are working to ensure the patient-doctor relationship survives.

    http://ducknetweb.blogspot.com/2012/07/the-institute-for-research-on-humanism.html

  6. Absolutely and Hallelujah, John. MU is about the EMR, not engaging the patient. Engagement is an effect. MU is a means. Engagement is directly related to an outcome. MU is an infrastructure blueprint.

  7. As a family physician who has been using EMR since 1995, I have enjoyed what is an actual discussion on this blog. Here’s my two cents:

    Making data available to patients and providers is a fine concept, one which committees use to attempt to construct programs like MU. But rarely do they possess the operational knowledge necessary to make it actually be meaningful. That is not to say that getting folks to think through the problem (this blog is a great example) is bad, nor is “encouraging” docs to adopt the technology. Ultimately there are folks who actually use the stuff who will lead the way in getting the proper workflows in place (another good example of this blog). Unfortunately government run programs tend to operate by poorly designed workflows into play; the system improves overall through fixing the problem. Frustrating. I worked for awhile for MassPRO, a QIO, and the non-profit mentality was a slow and arduous process. It is the nature of the beast, and possibly a necessary one, but I wander off topic…

    We (a 3 provider independent FP clinic) use Mr. Wolfram’s product in a GE environment, and it is a key piece to our workflow, enhanced results being just one among several benefits. Enhanced results give us the ability to blend results graphically with our care plan and present it to the patient in an easily understood format. We can communicate not just present data. The concept of the visit summary is a flawed, counterproductive, and expensive mess. When we as providers gather enough information to discuss a care plan with the patient is not necessarily at the end of a visit. For longitudinal care, a visit is just one of many way stops along the road. Healthcare is mired in a transactional mode, largely I think due to our payment structure, but also due to the lack of any kind of operations management fundamentals.

    The issue of who should be the repository of the data: the patient. It is their data. My job is to provide them with recommendations and a care plan. Two completely different things! And the way we acquire data and deliver care plans are two separate workflows that must be combined into one productive clinical experience. When I teach operations management, I use a definition of workflow that takes this into consideration and I offer might be a helpful and fundamental perspective to keep in mind on this issue. A workflow is defined as data points becoming information that generates an action. The definition of information: an individual’s reaction to data. This implies a context beyond the scope of the information itself. Say your blood sugar is 500. What does that mean? Nothing much in itself. If you draw blood in the ER on a person with an IV with glucose in it, it is meaningless clinically. If it is a fasting sugar in a 6 y/o in DKA, it is a very important number and might drive us to consider a dangerous but perhaps lifesaving insulin drip and you need to formulate this in an understandable fashion quickly to panicked parents. So it is an individual’s reaction to data that gives us information, and this must be communicated to others. Not just the patient, but fellow care providers, family members, etc. Saying “here is the data and the information I derived” is not enough.

    Personally, I ran restaurants for eight years before becoming a family doctor. Operations management is the key to any business, and it was surprising that my former occupation was the only good training I had for running a clinic. In fact, most of the “instruction” I found during training was ungrounded and counterproductive. I am gratified to finally find that all of this focus on EMR adoption is driving us to consider operations management. Solutions exist, we use them everyday. How do we get others to adopt them is the question.

    • Tom, fabulous commentary from one who is out there actually trying to make all this work. You bring up some excellent points and also mention that you are using a previous commenter’s solution. What I would like to know is does such a solution automatically create a visit summary that is educational and personalized to that specific patient, or is there some tweaking that must be done, some explanations to the patient beyond just handing them the summary.

      In my own example, my physician, who I really do admire and have strong faith in is still frustrated by the current process. He works in a hospital so it is not like he can go out and install some third party solution to address the problem. What then?

      I do know that there are some solutions out there that try to address this problem but none that reach the level of personalized patient education I am seeking. It may just be a period of transition and these solutions will become available when the market is ready to fully adopt them. As we are still in the midst of just trying to digitize healthcare and address the operational issues surrounding this digitization effort, it may yet be awhile as my own conversations with CIOs still revolve around physician empowerment (or more like let’s make sure they use this stuff) rather than patient empowerment.

      • The solution I use is an example of using graphical lab results to convey a care plan, it can certainly be used as a visit summary. It allows you to store commonly used phrases to quickly build a meaningful message to patients. So they can see a graph of a normal range of cholesterol, with their abnormal result outside this range printed in red. The physician comment is adjacent to this and might say “Your cholesterol is still too high, we have increased your medication as we discussed at your visit and want to recheck the level in 1 month.” A quick, graphical message specific to the patient that I can put together in seconds with the stored responses (which are unique to each provider, not the clinic. These are truly “my” responses.

        I would also like to point out, though I hate “committee speak”, sometimes relief can lie within them. The standard for the visit summary contains something of an escape clause. If the provider believes that including information in a visit summary could lead to harm, such information can be excluded. In our clinic, basic information such as your diagnosis, medication doses, lab results, etc. are available 24/7 on our clinic portal. We believe that a standard visit summary beyond this kind of basic information, spit out by the “all data is equal and important” EMR is confusing and misleading to patients by its own very nature. Therefore our “visit summary” is available to the patient in real time always as we define it by diagnosis and medication changes. Anything beyond this basic data SHOULD be tailored to the patient’s particular education level, care plan and where they are in the natural course of their condition. Impossible by an automated process. And the MU regs gave us an out, so we took it. The comments regarding the visit summary on this blog have certainly validated our decision.

        I have spoken with several large healthcare systems regarding how they can “fix” their system-owned clinics with their employed docs. The workflows are broken, most of the band-aids in the market don’t work. The real solution is to design a better concept (we think we have a pretty good one), then recruit to the concept. They really need to redesign from the ground up. One result of our re-engineered workflows: the MGMA average is a 4.5:1 employee to provider ratio. For 3 providers, we have a total of 6 employees and we do all of our own billing, collections, etc. other examples: we have not turned over an employee in over 2 years, 90% of our patients are seen within 24 hours of their phone call and if you call our office after hours you will get your provider’s cell phone number. We are fundamentally different from the average clinic out there. These workflows are empowered by a formal business plan and careful examination of proposed software solutions. So the good news is we can fix most of these problems. We just need a system to make it widespread.

        At least for primary care, if the Affordable Care Act is completely implemented, there will be dollars and incentive to move to a model such as ours.

  8. Great post John!
    We are in the VERY early phase of the digitization of healthcare. Making data digital & available to all is a critical first step. The current risk averse culture that exists in Healthcare has served it well by creating a $2.7T industry. Fear & comfort is the enemy of change. The redesign of healthcare delivery to adapt to each consumer’s health story, life flow & knowledge level is a HERCULEAN task! We will also need to simultaneously redesign how providers’ deliver & enable health & wellness – another HERCULEAN task! As with every great quest there will be great surprises & huge disappointments. We must learn fast from BOTH & continue on the journey…

  9. John,
    Thanks for your thoughtful post. There’s no doubt that a good Ix (information prescription) requires three things, which is why “information therapy” really is about “the right information to the right person at the right time”:
    1) Good information — just the beginning
    2) Context — (“Right person”) the information that one person needs is different than what another needs
    3) Timeliness — (“Right time”) even if you get 1 & 2 right, the info that you needed right after that visit may be different than what you need a month from now
    Some of this is explored and different approaches are given in this IxCenter white paper from 3 years ago (http://www.healthwise.org/docs/document/ixdocs/8154.pdf), but the real opportunity to target and tailor this information most effectively is the innovative use of technology. If you look at the paper AVS from Group Health and compare it to what you’d see in their online version — in which every lab test has an embedded hyperlink explaining what it is and to content that explains what it means — you can see the opportunity.
    All that said, the challenge on the reg side is that there’s only so much that the feds can mandate without being overly prescriptive and potentially stifling innovation. The HL7 Infobutton standard (included in Stage 2 S&CC by the way) will help, but we need to get even more granular than that eventually.
    There must be some Ix innovators out there who can build on this comment!
    Josh Seidman

    • Josh, you did some great work with Information Therapy and thanks for bringing it up here.

      I’m with you in that the drafting of regulations such as MU needs to be done with extreme care. Did quite a bit of research on the topic during my days at MIT where my research area was “technology diffusion in regulated markets.” At the time I did this work for EPA and DOE but the principles are still the same and pertinent to healthcare as well. My hope is that an increasingly competitive market and the move to value-based reimbursement models will be an even stronger lever for change than MU/HITECH in the adoption and effective use of HIT for patient engagement. Honestly, it is exactly that reason that I first got into this crazy healthcare market.

  10. John,

    II am not sure a “hackathon” is the way to go John. In my limited experience you end up with a lot of bright software folks developing solutions absent any real understanding of the inner works of the physician office. I live in Silicon Valley and know many such software engineers. Given your area of study you know this better than most.

    Rather what’s needed is a “talkathon” where physicians and patients kick ideas around to come up with workable solutions. The problem you describe in your post…and the same problem experienced by most of us at one time or another…is a content issue (relevance and literacy) rather than a technology issue.

    Physicians want to do the right things for their patients but they often lack the tools (content) and know how to “do it,” e.g., communicate effectively with patients. The result is that providers may unwittingly be disengaging otherwise engaged patients.

    I talk extensively about this engagement disconnect in my latest white paper Patient Engagement and The Primary Care Physician. E-mail me at stwilkins at gmail.com for a copy.

    Steve Wilkins
    Mind the Gap
    http://www.healthecommunications.wordpress.com

    • You’re right Steve. I’ve seen enough results of hackathons to know that very few if any of these would produce a solution that would see wide adoption. Something more like the Aetna CarePass challenge has more potential as a $100K prize will attract some reasonably savvy developers. Even there, within the confines of that still fairly small amount, it would be difficult to create something that would be a natural part of the physician workflow.

      The more I think about it, however, the more I believe that a solution can run in the background, combing through a patient’s PHI matching family history, meds, conditions, etc. to lab results to create an informative visit summary that is truly informative and as I said in the post, personalized. This should not be a big stretch.

  11. John,
    Things are improving but not quite fast enough.
    Your post reminded me greatly of this poem by Elspeth Murray in the National Health Service of Scotland:

    This is Bad Enough

    This is bad enough
    So please …
    Don’t give me gobbledegook.
    Don’t give me pages and dense pages
    and “this leaflet aims to explain … ”
    Don’t give me really dodgy photocopying
    and “DO NOT REMOVE FOR REFERENCE ONLY.”
    Don’t give me “drafted in collaboration with
    a multidisciplinary stakeholder partnership consultation
    short-life project working group.”
    I mean is this about you guys or me?

    This is hard enough So please:
    Don’t leave me oddly none the wiser or
    listening till my eyes are glazing over.
    Don’t leave me wondering what on earth that was about,
    feeling like it’s rude to ask or consenting to goodness knows what.
    Don’t leave me lost in another language adrift in bad translation.
    Don’t leave me chucking it in the bin
    Don’t leave me leaving in the state I’m in.
    Don’t leave me feeling even more clueless than I did before any of this
    happened.

    This is tough enough So please:
    Make it relevant, understandable –
    or at least reasonably readable.
    Why not put in pictures or sketches,
    or something to guide me through?
    I mean how hard can it be for the people who are steeped in this stuff
    to keep it up-to-date?
    And you know what I’d appreciate?
    A little time to take it in
    a little time to show them at home
    a little time to ask “What’s that?”
    a little time to talk on the phone.
    So give us the clarity, right from the start the contacts, there at the end.
    Give us the info you know we need to know.
    Show us the facts, some figures
    And don’t forget our feelings.
    Because this is bad and hard and tough enough
    so please speak like a human
    make it better not worse.
    ————————————————————–

    Plain language, full transparency and actual usefulness are all part of use that is “meaningful” to the individual. If information doesn’t help you to make a better health decision or have greater success with a health behavior–it doesn’t really help. We are striving to meet these goals everyday–with as little gobbledegook as possible.

    Don Kemper, Healthwise

    • That is a fabulous poem Don, thanks for bringing it to light here as it conveys many of the feelings I had as I looked over those lab results and struggled to understand them while in the back of my mind thinking if I’m struggling with this, what must it be like for someone with a serious illness, or lack of education, or some other factor that may make it even more difficult.

      While I do applaud what many of tried to do to address this issue, including Josh with Information Therapy, your company Healthwise and of course those working hard at HHS I also worry that we may not be providing edification of the patient and subsequently empowerment, but confusion leading to resignation.

      I do see great potential, but also see a pretty bumpy road ahead.

  12. John,
    Thanks for your post, and for giving us a window into what MU-I might look like. I’m less pessimistic, though, because I see this as a thoughtful first step and one that it is likely to evolve rapidly, mostly from thoughful feedback from people like you. It can only get better.

  13. I wrote about this recently on Forbes: “Doctors’ Success Hinges on Transactor to Teacher Transition” – The etymology behind the word “doctor” was derived from the word ‘doctoris’ that means teacher in Latin…The doctors who are the best teachers are most likely to guide their patients to the best outcomes. More at http://www.forbes.com/sites/davechase/2012/08/12/doctors-success-hinges-on-transactor-to-teacher-transition/

    This is clearly a “crawl, walk, run” area. Smart providers will make it easy to allow their clinicians to curate info from sources like Healthwise as well as creating their own content (which is getting super easy). As you can see in that piece, there are some lessons to draw from the Khan Academy and “flipping the classroom” as you can see in the examples I provide.

    Part of the thesis for my company is that silo’ed patient portals are like pre-Google web search on web portals (relatively low value afterthoughts). MSN, AOL et al just thought of them as yet another feature. Most pt portals are simply a marketing checkbox. Google obviously showed there was a lot more value — in fact, more than the web portals themselves. Companies like mine’s success or failure will be driven in large part by how easy we can make it for providers to do what you describe. We think Patient Relationship Management will be the successor to limited pt portals. Time will tell if we’re right about that. Apparently Shahid Shad agrees – http://www.healthcareitnews.com/news/9-ways-future-ehrs-need-support-acos.

    Here’s how I describe what we do today. In healthcare, we do the equivalent of sending patients to a foreign land, give them directions in a 2nd language and push them out the door towards a destination called “health”. We tell them if they get lost to come back and we’ll try to do the same thing again. Most pts won’t ask their MD to repeat something they don’t understand and we know ~80% of what a pt is told is forgotten. What’s needed is the equivalent of a “GPS for healthcare” that can track their progress, communicate with them if they are off track, etc.

    I’m afraid that until payment incentives get straightened out, most won’t do what you describe. This is why I’ve studied the Direct Primary Care (DPC) model (“concierge medicine for the masses”) as they have a payment incentive aligned with outcomes. They are getting closest to the patient-centric, accountable and coordinated model we need to move to. If you want to see the future, look at orgs like Qliance, Iora Health, Paladina Health and others.

    Shameless plug: I’m publishing a paper on DPC (via the California Health Care Foundation) in the next month or so for those who want to learn more. Contact me via http://www.linkedin.com/in/chasedave if you want to see the paper on a portion of the ACA that I call the “David Clause” (as in David & Goliath) that very few have noticed but I think has big ramifications. From all I’ve studied, DPC is the “Triple Aim Champ” by a mile.

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  16. In the emerging era of participatory medicine and risk- based accountable care, it is absolutely necessary to transform the average, ordinary patient into an empowered e-Patient by helping them understand the meaning and implications of their own test results.

    In 2010, Tom Goetz, MPH, executive editor at Wired Magazine, collaborated with Drs. Steven Woloshin and Lisa Schwartz, professors at the Dartmouth Institute for Health Policy and Clinical Practice, in a pilot project that redesigned the display of the results of several common clinical lab tests and transformed unintelligible data into much more meaningful, actionable information (http://www.youtube.com/watch?v=-P2M3nGEuIQ).

    In December 2012, in response to proposed federal CLIA regulations that would allow patients in every state to request and receive their lab test results, Ignis Systems released a new “EMR-Link ResultsAnywhere Plus” product which enables the transmission of lab test results that are clear and easy for patients and their physicians to understand and provides out-of-the-box integration to the leading national reference labs and to independent regional and hospital labs throughout the United States. (http://www.prweb.com/releases/2011/12/prweb9034586.htm).

    However, what has been largely overlooked until recently is that physicians also have a big problem in efficiently viewing and sharing test results. The major reason is that in the pre-interoperability, data silo era, healthcare IT system suppliers have had no business incentives to redesign the antiquated processes used to report cumulative test results to physicians or patients. Accomplishing such a constructively disruptive innovation will require transforming the infinitely variable formats reporting test results as incomplete, fragmented data into an intuitive, standard format that displays all results as complete, clinically integrated information. This is the kind of human-centered redesign of the test results reporting format that is absolutely necessary to make all cumulative test results much easier to read, act on and share with collaborating colleagues and empowered patients.

    By helping physicians and patients collaborate in saving time, reducing testing costs, and improving safety, reporting format standardization and clinical data integration will help achieve the goals of Dr. Berwick’sTriple Aim–improving the experience of care, improving the health of populations, and reducing per capita health care costs.

    As the growing portfolio of ONC’s transport, vocabulary and content exchange standards continues its disruption of HIE 1.0 and health information exchange itself is commoditized, enlightened self-interest could inspire the most competitive healthcare IT system suppliers to finally help physicians and patients more efficiently manage the growing tsunami of electronic results.

  17. Pingback: Room for Improvement: Personal Health Records « Health 2.0 Austin

  18. Pingback: Room for Improvement: Personal Health Records « health, wealth and happiness

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