Wanted: Quickstart Guide for Personal Health Platform

frustrationThis has been a year that I will not be sad when it is laid to rest.

In June I fractured my right heel while hiking in Tevas. (Note to self, if you are hiking, where hiking boots!). July rolls around, a number of stressful events occur and I end up with some sort of stress related, intestinal nightmare. Been on Prilosec for last couple of months, saw GI last week, endo scheduled for mid-December.  Then, in a charitable act I do the local benefit ride, Hub on Wheels, only to go down in a wet corner, fracturing right wrist and receiving a nasty laceration above right eye.

How many separate institutions have been involved in my care over the last six or so months (physicians, clinics, lab and hospitals)?

Heel, 2: Radiologist and podiatrist, each separate practices.

Intestinal problem, 2: Primary care doctor (clinic), lab work, (clinic), specialist (Boston Medical Center).

Bike crash, 2: Trauma/ER (Brigham & Women’s), plastic surgeon (Faulkner Hosp.), orthopedist (brigham & Women’s).

Six separate institutions, each with their own separate systems, distinct policies and procedures for gaining access to/copies of one’s records.  And in my initial inquiries, I’ve yet to find any of these institutions that will provide my records neatly packaged in a common CCD or CCR format on a CD or USB that I could then easily upload into my personal health platform (PHP).  All institutions stated I can certainly get a copy, but it will require going to separate offices, facilities, filling out release forms what have you to get those records, and they will be, rum roll please…

on paper.

Since none of the institutions mentioned above have a relationship with either Google Health or HealthVault, if I want my information stored in one of these accounts, I will have to enter the information myself or use one of the services on these platforms (Health Postbox Express or yourHealth), which you can send your records to (or automatically retrieved from your clinician) and they’ll upload your personal health records for a small fee.

My God that seems like a lot of work. I work in this industry and find this task of collecting my records daunting.  Is it any wonder that consumer adoption of these platforms and PHRs in general is so lackluster?

There is a sliver of hope in that the meaningful use requirements for HIT adoption under ARRA do support consumer access to their records and better yet that physicians provide their customers a PHR in 2013 (still don’t know what that PHR might be, could be a disaster if it is nothing more than a tethered, portal view into EMR), but that still does not overcome the basic challenge for just about anyone:

  • How do I get copies of my records?
  • How do I know my records are complete and accurate?
  • If the records are incomplete or inaccurate, how do I rectify?
  • What format (standard) should I ask for if I have a choice?
  • How do I get these records into my personal health record account?

These may seem like basic questions, but they are very real and there is no clear and compelling document out there today (if you find one please provide a link in comments section) that lays it out in plain English (or other language of your choice).

Google Health, HealthVault, WebMD, Dossia and PHR vendors are you listening?

What the market needs, heck what I need is a clear and concise QuickStart Guide that addresses the questions above. Any takers?

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Posted in consumer health, Engagement, Google Health, HealthVault
26 comments on “Wanted: Quickstart Guide for Personal Health Platform
  1. Brilliant. Thank you.

    Very sorry for your discomfort and the reasons for your aggravation. Maybe we can grind this into the faces of some people who need some grinding.

    I keep saying in my talks, “Patient is not a third person word. Your time will come.” Let’s use the anger to demand people wake up and do something.

    (If I’ve missed your intent I’m sure you’ll let me know…)

  2. This is something that only the Gubment can quickly rectify. The market is not going to solve this any time soon for lots of reasons. Part of any “health reform” legislation should provide for answers to your list of questions. It’s not unlike HIPAA, which mandated that citizens have access to their records upon request, in that you could mandate that providers give citizens explicit instructions (a la HIPAA release form) on how/where to retrieve their records and in what formats.

    This will at least provoke data liquidity on the consumer side, which is what’s really needed. Then smarty pants entrepreneurs and developers can get cranking on tools to help aggregate, manage, and incite actionable behavior based upon the information.

    My last conversations with DC peeps did not talk about any of this, and I would suspect that there’s no language being drafted even in the same solar system to provide for this. You’ve raised an important issue and I think we should ask our congresspeople what they are doing about it.

  3. John, What a horrible and frustrating six months you’ve had. I wish you a kind gentler 2010.

    I have provided answers to some of your questions at my website (how to get your records, how to find errors, and how to rectify http://patients.about.com )

    Sometimes, worse than the frustration of not knowing all those “how do I’s” is not even asking some of the important questions. For example, few people know about the Medical Information Bureau which is like a credit bureau – only for health records. 99.9% of health-related insurers belong to it, and they mine each other’s data for information each time someone applies for one of their policies – health, long-term care, disability, life and so forth. Ever wonder how people get turned down for pre-existing conditions? Now you know.

    Here’s the problem – you might fix your immediate record with your one doctor, but that doesn’t fix it with your insurer, nor does it fix it with the MIB. An error can shadow or haunt you for years unless you know to fix it, and then do so.

    Dave’s right — use your anger to do something about it. We’re all in this boat, only most of us don’t realize it. You’ve had a wake-up call, now. It’s really a call to action.

    Hope you’re feeling all “healed” soon….

  4. Bob Coffield says:

    Great post John. You point out the practical realities of our current health care system and the fact that there is no standard procedure and process for obtaining your own health information and data, verifying whether it is complete or accurate, etc.

    I would point out that the HITECH provisions under ARRA move the issue forward by empowering health care consumer and giving them the right to request/obtain electronic copies of their records or have them transmitted directly to a third party (like Google Health, Healthvault, etc.). The new law gives an individual the right to obtain from a covered entity (hospital, physician, etc.) who uses an EHR a copy of his/her PHI in an electronic format, and if the individual chooses, to direct the covered entity to transmit the record to a 3rd party. I suspect we will see ONC issue more detailed regulations on what this requires providers to do and not do when a health consumer exercises their right under this new provision.

    However, the devil is in the practical details of how this process will work. You are right that there is a need for a Quickstart Guide to help consumers better understand how they can access their health information.

    For those interested the section of HITECH is under Section 13405 (e). It states:

    (e) ACCESS TO CERTAIN INFORMATION IN ELECTRONIC FORMAT.—
    In applying section 164.524 of title 45, Code of Federal Regulations, in the case that a covered entity uses or maintains an electronic health record with respect to protected health information of an individual—
    (1) the individual shall have a right to obtain from such
    covered entity a copy of such information in an electronic format and, if the individual chooses, to direct the covered entity to transmit such copy directly to an entity or person designated by the individual, provided that any such choice is clear, conspicuous, and specific; and
    (2) notwithstanding paragraph (c)(4) of such section, any
    fee that the covered entity may impose for providing such
    individual with a copy of such information (or a summary
    or explanation of such information) if such copy (or summary or explanation) is in an electronic form shall not be greater than the entity’s labor costs in responding to the request for the copy (or summary or explanation).

  5. aye! Thanks Trisha and Bob. I’m SHOCKED that this language made it into the act. It would seem that forces would align to not allow this.

  6. “How do I get copies of my records?
    How do I know my records are complete and accurate?
    If the records are incomplete or inaccurate, how do I rectify?
    What format (standard) should I ask for if I have a choice?
    How do I get these records into my personal health record account?”

    This is why EMR tied patient portals are so important. The PHR vendors can’t do much to help you because they require that you have the CCR record to do your import. The cheapest and most sustainable way to get patients their CCR record is via an online portal. Burning CDs and handing out thumbdrives is too time consuming and expensive. If healthcare organizations rolled out simple portals that let patients request access, view their medical information, and export it to a CCR our problems might be solved.
    If you noticed problems with your record you could communicate that through the portal to the organization.

    Unfortunetly most places are still getting caught up and EMRs are the only things on their minds now. The EMR vendors need to have the patient portal tools available so there is an avenue to get CCRs out to patients efficiently.

    Great blog!

  7. MG says:

    A set of personal experiences that was succinct and translates into a very legit and straightforward request. Well written and I am willing to bet that just about everybody has either personally experienced your frustration or on behalf as a caregiver for someone in their immediate family.

    As for ARRA, we’ll weight and see. Patient portals are just a start and it is going to be much more interesting to see just how many physicians actually adopt EMRs and just how the local HIE developments play out including the role of the consumer. Some RHIOs/HIEs have made real progress or are planning to make progress on this front and it would be really interesting for you to keep closer tabs on them.

  8. Adam says:

    Very thoughtful piece. Thanks much!

  9. Bob Coli, MD says:

    John,

    Some patients using John Halamka’s Beth Israel Deaconess Medical Center facilities and physicians are already importing their PHR summary data in the CCD/CCR format into the Google Health PHR.

    See: https://health.google.com/health/directory?cat=importrecords

    Bob

  10. Bob, if you believe that’s a reality, I’ve got a bridge I’d like to sell you. 🙂 http://is.gd/4DsMk (I’m the one who tried to move the data.)

    Indeed it’s technically possible to import a small subset of one’s BIDMC data into Google Health, but hardly anything that’s useful. This was the subject of a massive amount of publicity last April because the reality is so vastly different from what was announced as fact a year earlier.

    For a more recent update: on 9/21 and 9/30 I visited two specialists, receiving four diagnoses and two treatments. The COMPLETE total of what’s in my PHR for those visits is:

    9/30 OUTPATIENT ACTINIC KERATOSIS
    9/21 OUTPATIENT

    That’s it – not a word more. Doesn’t do much good as a personal health record, eh?

    btw, on 9/30 one of the diagnoses was a pre-cancerous sun-related skin lesion, which the doc froze off. That might have been more significant to record in the system than the crusty thing on my scalp that did make it in. Especially might have been a good idea since I was a near-fatal cancer patient.

    • Bob Coli, MD says:

      Dave,

      I remember hearing about “e-Patient Dave” last spring, but I never saw a detailed description of the problems with erroneous and incomplete data that you encountered until reading your response to my comment on John Moore’s Chilmark blog tonight.

      Your efforts focusing on the quality of PHR data, PHR usability and the patient user experience are a valuable contribution to the national imperative to create interoperable healthcare information exchange.

      Since you work with data all day and are interested in seeing what patients and doctors really need actually get built, you might be interested in an application common to all EHR, PHR and HIE platforms that I and a group of Rhode Island physicians have been building that would greatly facilitate the processes of reporting, viewing and sharing of all diagnostic test results at:

      http://diagnosticinformationsystem.com

      Thanks for the important insight and best regards,
      Bob

      • Thanks, Bob. As time allows (I hope in the next week) to pursue your idea. Sounds like a great idea. Please ping me (via my contact page) if you don’t hear back soon.

        Would love to visit if I get down to your neck of the woods.

  11. I agree with Dave. PHR’s like Google Health and Healthvault look nice on the surface, but when you dig a little deeper you see that much of them are lacking substance. I don’t fault Google or Microsoft for this, it is just that the EMR vendors are still trying to get their minds around the CCR/CCD and most don’t populate it entirely yet. PHR’s will always be a step behind until Google and Microsoft connect directly to the EMR, and PHRs provided by EMR vendors usually have problems because the vendors themselves are a little behind the times and want to keep their data proprietary. Epic Systems is working on a PHR, called Lucy, that will tie directly to their EMR via their MyChart product. I like it because it isn’t driven by advertising. The downside is it is much more proprietary.

    • Aaron,

      To be clear, I didn’t say a thing (here or in my blog posts) about the sufficiency of apps like Google Health or platforms like HealthVault. My non-expert gut tells me that some such wide-open non-gated platform will win widespread adoption.

      My posts have been about (a) the total non-existence of the functionality that was announced in mid-2008, (b) the general lack in health IT of data quality practices that are commonplace in other industries.

      The most technically accurate post about my post was on the Information Quality Trainwrecks blog, a non-HIT blog that knows quite well how bad data can cause deaths. But even they got the headline wrong, suggesting it was Google’s fault.

      As my note above (about my September visits) shows, it doesn’t appear that things have improved much at my hospital. My MD tells me there’s plenty of good quality in the back end, for docs to see, but it’s hidden from me (or, more accurately, simply not presented to me) and is thus of no use.

      My takeaway lesson is that we have much work to do, because health data exchange is good and patient engagement is good. Let’s get started.

  12. Much work to do is an understatement. Simply allowing for data interchange between provider/payer entities is like passing the first internet packets in 1969. The reality is that all of these entities already exchange data. There’s data all over the place. Having a common record format is not the problem. There are already common record formats. The problems are much deeper and complicated when it comes to moving data around between providers, payers, and the government (for CMS, VA, etc).

    What’s needed is information that can be acted upon on the part of the citizen.

    Data –> Information –> Knowledge –> Wisdom

    Citizens already know that their BMI is high. They already know that their LDL is high. They already know to quit smoking. They already know to take the stairs. What they need are incentives to do something about it. Having a care plan is important, but having a reason to act on that care plan is more important.

    We’ve got enough data. We’re drowning in data. If we want to evolve a solution here, the place to work on is incentive to act. Having your records is great and is an important part of managing your situation (studies have shown for decades that people who actively know their stats yield better outcomes). But if you are properly motivated to improve your health, you’re going to find and manage your data anyways. Dr. Marie Savard proved that a long time ago.

  13. Taylor Walsh says:

    Scott, your comparison in time to 1969 is apt and I suspect regrettably portends the pace of advance in these issues. Actual consumers didn’t start to experience the functionality of ARPAnet-like applications until the early 1980s — and that was on the wholly independent, non-Internet class of online services (CompuServe, The Source) that established the business case for online anything. The Internet/Web as a consumer-centric resource emerged in 1994. That’s 25 years of evolution before anything actually suggested that “scale” was possible.

    It was all technically new, unfamiliar, hard to do — for developer and end-user, and required an entirely new industry to be established to create anything useful on a mass, universal scale. And for most of that time, what was really useful – connection – was dismissed by the legacy communications and content industries (see: user generated content).

    Obviously technical and connectivity conditions are night and day now. But the complexity of technologies, disconnections among service providers, incompatible standards, incompatible perceptions of fundamental attributes and services (EMR, EHR, PHR, et aliaHR) to say nothing of definitions, costs and privacy elements create conditions all too familiar for anyone who slogged through the early online years.

    The genius of Internet design allowed for routing around bottlenecks. We could use some version of that here. The PHR as packet. If the PHR had the level of primacy in its system that the original internet packet had, it might override those 6 variations that John encountered. The metaphor is a stretch. But now that I think if it, why isn’t the PHR at the center?

    • Taylor, I would say that the metaphor is apt and shows an enlightening path. The Internet “succeeded” because there was a mechanism where anyone could suggest an idea (“a protocol to send electronic mail”), peers could review the idea (“this stinks! try again!”), and if enough people thought it was a good idea, it would get adopted (RFC 821). That’s what has brought us what we know today. Dozens of protocols and systems that together have delivered a fairly cohesive (albeit imperfect) platform which pretty much all global thought, communication, and commerce now rides upon.

      There is no such equivalent for our health.

  14. Sam Adams says:

    I’ve got a slew of comments, going to be hard to be concise.

    First, respectfully, you’re barking up the red herring. Google Health, HealthVault are the platforms that PHR’s are built on – the data comes from various different EMR’s – and there’s a slew of them. Almost every one of those, with rare exceptions, have any desire to entertain anything resembling data portability – why should they? It’s profit out of their bottom line.

    The truth of the matter is that creating a CCD or a CCR or even Google’s version (CCR-G – why Google why?) is TRIVIAL.

    Synching or storing or doing a drop off pick up (DOPU) with HealthVault is TRIVIAL.

    Getting the data from one, or more, EMR’s or clinical systems – and you’re talking the wild west. Never mind what the HL7 “standard” might say, you’ve got “Z” segments galore every which way from Sunday and poor to non-existent discipline around data integrity, much less sanity.

    It’s no wonder all you can get is paper!

    Second, respectfully, the government has little to no clue of what needs to be done here, if they did, HealthCare Reform would be both more expansive and also tighter scoped than the rambling villiage idiot it’s become.

    The ONLY way you’re going to bring about change is going to be through an alliance of patients, clinicians and healthcare providing organizations to push the vendor’s into a common, acceptable format and make CCR’s & CCD’s come out of the box, instead of having to pay an obscene amount for an “interface” – if that’s even an option.

    I can speak to this firsthand because this is exactly one of the projects that I’ve kicked off here. Given a requirements to synch or DOPU data into Healthvault, for example, first I have to have ONE realiable system of record to pull it from.

    At least 60% of the work effort is going to be on creating that operational data platform that I can then leverage, be it for HealthVault or Google Health or some other entity that can accept CCR’s or CCD’s. The work effort for CCR”s & CCD’s? Around .5%. HealthVault or Google Health, around 4%, but only because I’ve got to build some sort of rules-driven prototype to get the data flowing.

    I’m more than happy to admit I’m myopic since by background is as a computing professional – however – no amount of effort is going to move this forward until you can unfeter and make your data portable.

    This is an industry problem that needs to be owned and solved by the industry, not vendors and certainly not the boobs in government.

    My own sestertii.

    • Taylor Walsh says:

      Sam, what role do consumers play in your construction project? Who represents their (our) interests in the design and implementation?

      • 1samadams says:

        Great question and it’s one I’ve been asking myself of the business – realize I am in a software development team in an IS team of a large multifacility hospital system. To say that this is new to them is an understatement 🙂

        I’ve asked if we’re building a patient portal FOR patients or FOR the health system – there’s a different set of priorities and deliverables. While the system chews on that question, I’m standing up the infrastructure necessary to support the common ground between the two – and there’s significant work effort there given the fragmentation of HIT systems.

        At some point we need to include a patient perspective – how that’s going to happen remains to be determined and is more of a cultural challenge than anything else.

        I’ve got a couple of aces up my sleeve (zoomerang) that’ll be better than the vacuum I would otherwise be looking at – but realize that’s something that I’m evangelizing myself – Sisyphean to say the least.

        Consumers should drive the UX, should drive the requirements on what they need – and should be prepared in this case to get recruited as part of a larger effort to hold the industry accountable to standardizing or creating real, meaningful interop standards.

        Hope that answers your question/?

      • Taylor Walsh says:

        Sam, that makes perfect sense from your perspective and work objectives and that set of rocks up on the hill above you.

        We have to do a lot more than to include patient perspective. Unfortunately, there is no patient-interest-centric community of which I am aware that exists to stand up and say “hold it” to the dev teams. Somebody needs to do a GUI spec for the PHRs of the future. An MPUI (Medical Patient UI … ?)

        One concern is that more and more responsibility for personal health information is being placed into the hands of consumers, and involving different entities — like their employers (behavior-centric wellness) — and creating more external repositories for their health info.

        I guess one word springs to mind for your work plan: “hooks.”

      • 1samadams says:

        Wouldn’t let me respond to your reply below, I’ll respond here –

        Typically, the hold it needs to be issued to the vendorbusiness manager who’s timeboxed a project without really gathering all the fiddly bits that make a project work. It’s like building a house without a blueprint – oy! I find myself in the unenviable position as the technologist going Hold Up to the business. Stop, Drop and Roll…

        There MIGHT be something along the lines of what you are looking for from a UI perspective based on work that MS has done in the UK:

        Check out:

        http://www.mscui.net/

        Especially: http://www.mscui.net/Introduction/Introduction.aspx

  15. Sorry to be late with this comment, John, and also late with condolences for your unfortunate series of misadventures.
    As to a practical solution for handling PHI, allow me these self-serving comments—self-serving because of http://www.nomoreclipboard.com (NMC), but warranted until a more perfect day for health care IT.
    If one uses NMC for PHR, the option is given to create a bar-coded sheet and carry it or send it to a clinic or physician or ER. When the PHI desired (always takes human oversight unless it is to be a data dump) is identified, it is a simple matter to put it on the FAX machine with the bar-coded sheet and send it to your account at NMC where it will be in your in-box. From that point, one files it in a virtual cabinet.
    Yes, it is imperfect especially in that a perfect solution for single lab values with accompanying, universally accepted “normals,” does not yet exist. And it is imperfect in that a reasoned summary, with diagnostic and prospective conclusions is not generated. But, the data is there and the important records are there—available anywhere one can access the Internet.
    Until hospital IT is more than document management and until physicians have at least skeletal portals capable of interoperability, this is utilitarian.
    Hope you are healing well. Bill

    • Dr. Cast, how many people use the bar coded cover sheet to get their records into your PHR? I’m curious because I suggest this a thousand times a day and am always rebuffed that “it will never happen”. Surely you have some successful case studies.

  16. Scott: I’ll see if our tech support at http://www.nomoreclipboard.com can dig out the usage statistics for barcode-FAX. I can tell you that it is not unusual in our home region (NE Indiana) because 65% of physicians have an EMR and 95% of docs, clinics, hospitals, labs use the HIE managed by http://www.mieweb.com. Paradoxically, they don’t need to use the bar code as much because their physicians are more likely to use the HIE. Features of our PHR, NoMoreClipboard, are meant to be stopgaps to allow “no doctor to be left behind” while he/she is on paper. We hope that the need for FAXing forms, even on the physicians’ own forms (a service we provide) is necessary only until HIE use, portals with PHR, and physician/hospital portals reduce that need. wcast@nomoreclipboard.com

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