Sunday, October 24, 2010

o-Patients

If you read this, you are probably familiar with the e-Patient concept. If you read this, you are most likely well educated, have an interest in health care and probably strong opinions regarding health insurance reform, and are very aware of the recent Government push for Health Information Technology adoption. Most people in this country will not be reading this, and most people, while aware of the political aspects of health reform, have no idea that their days of being just patients ended, and they ought to behave as consumers now, and preferably as e-Patients. These are the other patients, or for short o-Patients.

When Consumer Driven Health Plans (CDHP) made their debut, they promised to empower me as a consumer and allow me to make my own decisions on how to spend my health care dollars. I thought this was wonderful, until I realized that as an empowered health care consumer, I now have to spend money I didn’t have to spend before and I have to make decisions about forgoing treatments based on their costs. Empowerment usually translates into additional expenditure of both money and time and a requirement to make hard choices where none were needed before. I would have chosen to decline this empowerment offer, but unfortunately, since my employer was the decision maker, I was not empowered enough and my empowerment became mandatory.

I am now observing the e-Patient and Participatory Medicine movements. These also want to empower me to participate in my own health care. I am supposed to become “equipped, enabled, empowered and engaged” in my own health care. After spending about 20 years in various academic institutions, I think I am pretty well “equipped”. I don’t know what “enabled” means in this context and my CDHP experience makes me very suspicious of "empowered". Just like most people, except of course, the poor, uneducated and elderly, I did search for health information online, and I would like access to my family’s medical records, primarily so I can print out a school immunizations list without having to pay $10 per page. As to “engaged”, engagement is gradually being defined by the Government, the e-Patients lobby and various other interests, as active involvement in maintaining your Electronic Health Records (EHR), including full ownership and interpretation of “raw data” outside a provider organization. I may be equipped, but I am not willing to dabble at the practice of medicine and I refuse to become “engaged” in this manner. I have no desire to spend countless hours aggregating data from various providers, analyzing it (or having it analyzed), proof reading everything and becoming my own Medical Home. But then again, I am not big on “do-it-yourself”. I’d rather leave accounting to accountants, plumbing to plumbers and medicine to physicians. I suppose this makes me an o-Patient, along with the vast majority who is neither equipped, nor enabled and not even remotely inclined to actively manage their medical records at all times.

If you read this, you should also be aware that the Government is proposing to pay providers for adoption of EHR software and Meaningful Use of it. A significant portion of that Meaningful Use is making medical records available to patients for viewing and even downloading through Blue Buttons. This is a good thing and technically rather cheap and easy to accomplish. Josh Seidman PhD has a beautiful and touching story on how availability of medical records online allowed him to participate in his father’s care from afar. But this simple and powerful achievement doesn’t seem to be enough. e-Patients and their innovative startup supporters want much more included in Meaningful Use, and Meaningful Use is quickly becoming the blueprint for our health care delivery system. Meaningful Use includes no provisions, or requirements, for primary care physicians to aggregate and manage medical records for their patient panels, but it does include an ever increasing array of functionality that enables patients to do the same. Providers are not paid to aggregate medical records and patients are touted as the ultimate free resource. Empowerment is looming large.

On April 20, 2010, the Office of the National Coordinator on Health Information Technology (ONC), who is defining Meaningful Use of EHRs and therefore also redefining how medicine is practiced in the U.S., held a public hearing on Patient/Consumer Engagement. The presenters were the usual learned luminaries that you would expect; EHR vendors, silicon chip manufacturers, academic institutions, other research fellows, health care corporations, a couple of community services representatives, innovative startup companies and of course a famous e-Patient. There were no o-Patients in the room. ONC heard exactly what they wanted to hear. It is imperative to allow patients access to their medical records. But they also heard, from the e-Patients representative, that patients need EHRs to have “open APIs” so data can be extracted in any format they wish. I couldn’t help but wonder how many patients or consumers are familiar with the term “open API” and how would an “open API” serve someone like Josh Seidman who just wanted to read the medical records.

On June 5, 2010, the ONC had another public hearing. This one was about using Health Information Technology to eliminate disparities. I was very hopeful that this hearing would be about o-Patients, and it was. The participants were highly educated, very well meaning folks who dedicated their careers to helping the segment of o-Patients who is very ill equipped to join the information age. Along with reiteration of the dubious calls for extracting data from providers’ EHRs, ONC heard some serious concerns regarding quality and availability of HIT in small practices which serve most Medicaid o-Patients, and perhaps these discussions were part of the reason for Dr. Blumenthal’s recent appeal to HIT vendors to include providers serving minorities in sales and marketing efforts. Just like the previous hearing, this public meeting included no o-Patients and no practicing physicians.

So here is a suggestion for ONC’s next public hearing. If you really want to understand what people need and want, why not ask them? When you leave home in the morning take a bunch of public hearing invitations with you. When you stop to fill gas, give an invitation to the attendant. As you pay for the latte at your favorite coffee shop, hand an invitation to the barista. When you cross the park and notice the two older gentlemen warming up on a bench, hand each one an invitation. Hand one to your administrative assistant too. When you go out for lunch, invite your waiter or the little Italian Restaurant owner himself. If you take a taxi there, invite the driver. Assuming you work long hours, you should be able to run into the cleaning crew. Give each one an invitation. If you get a speeding ticket driving home, invite the officer. Finally, when you stop at the grocery store for milk, distribute the remaining invitations to the young checkers and the elderly baggers.

My guess would be that none of these folks will demand “open APIs” or “data extractions” and most importantly, none of these o-Patients will want to be forcibly empowered to take over the active management of their medical records. As long as e-Patientship is optional for those interested, it is a very positive and inspiring phenomenon. We do need to keep in mind though, that all those “open APIs”, “data extractions” and “untethered PHRs” cost money and consume physicians’ time. Since I am not aware of any offers from e-Patients and/or data-seeking startups to pay for actual data collection and extraction, perhaps it would be wiser at this point to spend our scarce resources on health services with broader appeal and better utility. The day the medical profession relinquishes, or is forced to relinquish, its last shreds of responsibility for any semblance of care coordination and continuity of care, and farms it all out to freshly "empowered" unsuspecting patients and their “untethered PHRs”, will be a sad day indeed.

14 comments:

  1. Amen! Please see my keynote at the Estonian eHealth Conference: http://www.icmcc.org/2010/10/18/patient-expectations-in-the-digital-world-tallinn-2010/.

    Lodewijk Bos

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  2. Unfortunately, if we wait for for the o-patients to understand the need for and to take the lead on innovation we'll be waiting a long time. I'd rather follow the e-patient into the future.

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  3. Which is fine, but somebody has to "bring up the rear", particularly seeing that it consists of the vast majority of people.

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  4. >> "..it would be wiser at this point to spend our scarce resources on health services with broader appeal and better utility"

    I don't think that "the same dollars" are competing somehow, or that resources are scarce. Do you have any idea how much vendors charge for Healthcare IT systems?

    It can run into the multi-Billions (yes - that's with a 'B') for many large hospitals.

    HCIT vendors can certainly afford to re-invest some of their profits into providing open APIs and better access to the data that their software is collecting.

    TJL

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    1. I know, Thomas. However, open APIs are not easily created for a very large software product that was never architected with open APIs in mind. With all the changes required for Meaningful Use, and the need to compete on the new mobile platforms, vendors have very little time for other things. Even very large vendors.
      That is not to say that open APIs is not a great thing to have. The question in my mind, and others may disagree, is how important is it to have open APIs, instead of, say, ability to receive and send data in standardized formats?
      Are we really at a point where a large EHR vendor should entertain creating a platform for plugins to its EHR?

      The institutions that buy these billion dollar babies can and do extract data from their EHRs for research and extensive analytics (Kaiser comes to mind). I don't know who else needs or should have access to massive extractions of "raw data".

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  5. >> "Are we really at a point where a large EHR vendor should entertain creating a platform for plugins to its EHR?"

    You are mixing up several different ideas, including interoperability, extensibility, and openness.

    For example the "plugins" you describe are to support 'extensibilty'. Having a "pluggable" architecture is not the same as providing an open API.

    Many open APIs do not support writing "plugins".

    Twitter provides an open API -- but they don't do so to enable you to write "plugins" for them. It exists so that you can get and put data.

    And it doesn't have to be "massive extract of raw data" as you put it. How does the existence of an open API dictate the quantity of data that you request?

    Please try to stick to the point: having an open API doesn't lead to or require any of the things that you are bringing into your argument.

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    1. Fair enough...

      Let ask you a couple of questions then:
      1) What do you think is needed for an EHR vendor to agree to have someone "put" data into their database?

      2) as far as I know, APIs allow you to do more than just get data and insert data into a database. What type of services do you envision an EHR vendor should provide through these APIs?

      If it's all about exposing the data model, sharing the schema and providing read/write access to the database should suffice. I can see select access. I cannot envision insert/update/delete under any circumstances.... Am I wrong?

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  6. There are both "book length" and "Reader's Digest version" answers to your question(s), but let me try some that could (almost) fit into a text message:

    RE [Q1]: they'd need [a] an appropriate use case (see my answer to your final question below) and [b] a lot of good security

    RE [Q2] An API is as simple or complete as the API provider wants it to be, and the services that result would be more or less based on the vision, imagination and creativity of those taking advantage of the API, not necessarily the API provider's

    RE your final question, inability to envision an API supporting insert, update or delete: enabling Patients to maintain (adding, updating, correcting or even removing) selected portions of their own specific data in the EHR/EMR of a Provider is something that has been under consideration and discussion for quite some time now.

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    1. Without belaboring this too much, patients having the ability to edit their records does not require open APIs. It requires that the vendor provides this functionality in their product, and some do that while others will be doing that in the future if, and only if, customers want such feature.

      APIs are for third party developers. It has to make business sense to the original software owner. Allowing third party software to write to your clinical database is not something to be taken lightly and my guess would be that it will not happen anytime soon for any serious EHR vendor.

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  7. >> "patients having the ability to edit their records does not require open APIs. It requires that the vendor provides this functionality in their product"

    And again you move the cheese in an attempt to discount my answer. I presented the "Patient Self-Service Application built by a 3rd party developer" in response to your asking for a valid Read/Write use case. I never said that such functionality could ONLY be provided by a 3rd party, or that it REQUIRED an open API.. did I?

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  8. No you did not,and I am not discounting your answer.

    The argument here was that open APIs are not an imperative from most patients perspective. Not by a long shot.

    I do agree with you that there are many use cases where open APIs could be helpful to third party developers trying to bring their products to market.
    The problem is that unlike twitter, there is no business case for an EHR vendor to open up their platforms to others. If they were besieged by demand to build all those patient facing apps, and had no resources to accommodate the demand, then maybe. I may be wrong, but I don't see that happening anytime soon.

    BTW, if you just want to get and put data, what's wrong with plain old EDI? There are tens of thousands of those working in real time and doing just fine.

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  9. I do agree with you that there's currently no compelling business case (read: strong motivation) for EHR vendors to "open up" their products, and that the "typical" Patient is not demanding that to happen -- and I never said otherwise.

    So can we just shake hands and retire the debate?

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    1. Absolutely :-)

      The pleasure was all mine.....

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  10. >> "The pleasure was all mine....."

    Oh, I'm sorry but I'll have to disagree with you there - I enjoyed it too ;-)

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