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TECH: PHRs, EMRs and pretty much useless surveys

Because there was a conference Tuesday on Personal Health Records sponsored by RWJ and Markle, there were two surveys out yesterday about consumers and their interest in/love for/need for/ likelihood to buy into electronic medical records. The Markle Foundation, by the way, is one of the (frankly too) many organizations trying to push EMRs and PHRs on the unsuspecting American public — other than the public is now starting to suspect a little bit. In fact my girlfriend showed me an article in the Southwest Airlines magazine about the national health information initiative which I suspect wouldn’t have happened five years ago.

Markle’s survey suggests that 71% of Americans are in favor of EMRs, although in their release and in this article there are suggestions that privacy, confidentiality, motherhood, baseball, cute puppies and apple pie will have to be provided before people will actually use them. David Lansky is not a dumb guy but the seven principles are little too obvious and somewhat ignore how information technology actually gets dispersed and used (forget higher moral callings, and think porn and Baywatch). It’s yet another necessary but nowhere near sufficient list that was clearly designed by a committee, and I’m not too sure that their worthy effort will help that much.

But at least they have some decent numbers in their survey, suggesting that 60% of Americans want a secure online PHR and only 19% wouldn’t use one under any circumstances. In fact more say they would use one (68%) to order prescriptions than would support the creation of PHRs in the first place.  I assume the extra 8% are on the fence but would use it if it was there — or maybe it’s just an example of Americans being unable to keep their survey answers logical from one question to the next.

Meanwhile Manhattan Research continues to put out absolutely minimal snippets of information in its press releases. (I know I used to work for Harris but by comparison their releases and newsletters are treasure troves). Today’s release is that 15% of Americans (adults I assume, as they claim that equals exactly 29.8m people and there are about 300m Americans) are "on board" with an unspecified level of "interest" or "demand" in a PHR. Beyond the fluff there’s not much more information in their release other than they think that there are "7.6 million consumers actively emailing with their physicians". Working backwards from their other numbers this that means about 4% of American adults are emailing their doctors. Whether that counts me I don’t know. I emailed my doc using the RelayHealth system, and 6 months later his office emailed me back telling me that my application to email him was rejected.

So given that 15% is a lot less than 60%, Manhattan’s numbers are way lower than Markle’s and also way lower than these numbers from Harris last year regarding interest in using personal health records (although Harris found that almost no one was using an electronic PHR). In addition Manhattan’s email numbers are not far from the numbers I was getting about patient-to-doctor email use back in 1999–even though use of email generally has grown dramatically since then. Now, I’m not so sure Manhattan’s wrong. I don’t know — although I’ve asked and hopefully they’ll tell me — what their exact questions are, and the difference in the results is probably in the phrasing. And anyway all the way through the 1990s their predecessor organization, CyberDialogue, consistently under-counted the number of adults on the Internet, at least compared to Harris and Pew. But the evidence of successful PHR companies (or rather the lack of them) suggests that this type of PHR or patient-provider communication is minimal.

But the point here is not which survey company has got it closer to the truth. The point is that the growth of the PHR has almost bugger-all to do with interest from the consumer. If you’d asked consumers about their interest in online banking, online poker or online porn back in 1993, their answers would have been equally irrelevant. Consumers got online because they got used to it at university and work, and then at home it became available cheap (thanks AOL) and most of all because of email. Once they understood email, and once Tim Berners-Lee (from CERN not Cerner, as HISTalk hilariously pointed out) invented the Web, then all those other applications took off because someone supplied them and aggressively marketed them (OK, perhaps the porn didn’t require that much marketing!).

The problem with PHRs and EMRs is that the people who could or ought to do the supplying (the people with the patients’ data from which to supply the information) either didn’t do it for a combination of business reasons and technological incompetence (health plans) or because they didn’t have the data in a usable format (hospitals and doctors). And no one had any interest in marketing it, other than the standalone eHelath companies who had no links to the local providers and services, or personalized data, that the patients wanted.

To be frank, we’re not a whole lot further on, although we may be getting somewhere finally on the health plan side if WebMD finally gets Empire and Wellpoint off the dime. But as with the ridiculous survey that Accenture put out a few months back, asking consumers what they want to do and would pay for is pretty useless. They’ll do it if it’s marketed well to them, if it fits into their life "workflow", and if it’s useful and/or entertaining. That’s why Google searches on health topics are off the charts and why no one emails their doctor (even if Syd at Medpundit apparently thinks its her patients’ fault)

But the key issue is that we’re still a long way from many doctors having the data in a usable format to supply to their patients. Unless of course we all move to Seattle and sign up for Group Health. Harris reported in a WSJ survey just last week that while 79% of the public approve of the idea of the EMR (again near Markle’s numbers) only about 16% of the public had actually seen a doctor ever use one in real life. And if you think that the system is magically going to immediately respond to the consumer’s newly discovered desire to get their own health information every place they need it when they want it, well go back and read MrHISTalk’s excellent article on whether one health care organization can actually share basic allergy information within its own IT systems. then extrapolate to whether they can then provide that information back to consumers in double quick time. Hint, the answer is "extremely unlikely".

CODA: By the way, Esther Dyson is one of the people who’s now glommed onto this PHR space, and ran a session at the conference as well as a (damn expensive) day of her own conference on the topic. While I really liked her the one time I met her, I reviewed an early draft of her recent paper on the eHealth space and let’s just say that I don’t think I’ll be writing any papers on Eastern European venture capital any time soon. Oh, and when I met her she was essentially telling a bunch of health plan CIOs that they had to get on the web or die a horrible economic death. That was in 1997. So Esther, be wary of being sucked into our little vortex. Things move very slowly here!

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  1. If you are planning to implement an EHR system at your practise, You might want to know more about the stages involved.
    From an Information Technology point of view, there are six stages in the implementation road map.
    Stage 1:Assessment
    Stage 2:Planning
    Stage 3:Selection
    Stage 4:Implementation
    Stage 5:Evaluation
    Stage 6:Improvement
    Lets examine each stage and develop the frame work of a road map.
    Stage 1:Assessment
    A Project team represented by staff with the appropriate skills is formed and regular team meetings are conducted. These team meetings continue through out the the six stages.
    The first stage Assessment helps prepare the practice for the implementation by completing a Practice Readiness Assessment, This includes The profile of the Practice in terms of IT, assessment of Office staff usually conducted as an assessment Survey. A Hardware requirement analysis is also carried out at this stage.”
    Stage 2:Planning
    The practice data collected in the previous stage (Practice Readiness Assessment, Practice profile (IT)& Office staff skills survey)is carefully reviewed and based on this, the electronic health records implementation goals are defined and improvement opportunities are identified and targeted.
    Stage 3:Selection
    Based on the above defined Implementation plan, the EHR system’s requirements is defined. This will cover the EHR system configuration and a selection process and details of the goals that are archived based on the selection. The EHR system is selected in this stage.
    Stage 4:Implementation
    An EHR system implementation plan is created and the time lines for the implementation is agreed upon with the vendor. The implementation plan includes details on Installation and configuration of Hardware and EHR system software. Staff training program is initiated and System testing follows.The staff begin to use the EHR system. A journal of experience and processes is maintained.
    Stage 5:Evaluation
    A post implementation review is conducted and the Journal of experience/ processes is updated. The performance measures created during the planning phase are validated and a improvement plan is prepared.
    Stage 6:Improvement
    During this phase the EHR is modified to resolve issues encountered during the evaluation phase. Improvements as defined in the improvement plan are carried out.
    The Author Prakash.T.C is a Support manager at http://www.binaryspectrum.com

  2. Esther Dyson’s recent Cerner User Group speach on the need for consumer-centeredness went over like a fart in church. The audience – mostly consisting of nurses and IT people trying to implement this or that module of Cerner – identified with her that the user experience in healthcare sucks. That said, very few in the audience were able or willing to do anything about it.
    Her metaphors of healthcare or genomic Friendster and references to Relay Health, Resolution Health, and Real Life fell completely flat.
    A few physicians in the audience asked questions. I’m sure some hospital executives wanted to as well. But the bottom line is that economic incentives to care about consumers as more than “the people we want referred by physicians to come to our hospital for expensive, complicated surgery” will need to occur before anyone – other than payers and purchasers – will care.

  3. //to access my own medical record over a secure system and download a copy of it on a regular basis//
    I agree, and I’m a fan of the EMR as an ultimate goal: I just think people need to think through and address some of the questions first.
    * If a particular medical provider is keeping those records, what happens to access to those records if you’re relationship with that provider is suddenly severed?
    * Does your medical provider have the right to withhold your records while they are combing through them for legal liability?
    * Are all records available in the EMR, or will the medical provider hold back certain sets of notes that might come into play in the case of some conflict. (Re: you sue for malpractice on the basis of the records you’ve seen – the provider then trots out some secret surgeon’s assistant’s notes…)
    * What sort of liability/repair will the provider be obligated to perform? The efficiencies of technology tends to facilitate large-scale mistakes. If a technical error causes Kaiser to print medical record numbers on address labels (real example!), what will be done? Right now, Kaiser just gets to say Oops, and This Is an Isolated Incident. These “isolated” incidents are caused by the fact large datasets need to be sent to various downstream systems. Will these sorts of mistakes be regarded as tough luck for the victims?
    * Will the consumer be encouraged to keep their own copies of medical records, or will the technology discourage the consumer making their own copies?
    * How easy will it be to correct mistakes? Kaiser wanted the EMR to facilitate point-of-sale billing. Will human beings be phased out of the system so it becomes impossible to correct mistakes, argue or negotiate in case of a problem?
    * Will the cost of capital investment, maintenance, upgrading, and legal compliance outstrip the cost-saving value of the EMR? Or did the economy just make people obsolete for no genuine gain?
    * Will the EMR be “monetized” so that the business-heads of corporate medicine use it to extract more revenue from a captive audience?
    These are huge, huge questions. When people fall for the EMR’s sales points and fail to take precautions against the potential problems, they are asking to be robbed, cheated, and abused. All I want is for people to hear these problems, ask the questions, and protect themselves up front while they foster progress.

  4. gadfly,
    Not having a record of your e-mails sounds awful, but if it were possible for me to access my own medical record over a secure system and download a copy of it on a regular basis, I think that would be a real improvement over what we have now.

  5. //6 months later his office emailed me back telling me that my application to email him was rejected.//
    LOL! I hope this whole thing is a dry run for one of your public speaking engagements, because this hits home in oh many ways. The thought of Aunt Mildred coming home from her job at Walmart to buy her specially packaged medical records off the web version of the Home Shopping Network is hilarious.
    Specifically on communicating with your doctor by email: I distrust this the most. Kaiser conducts this email on a “secure” system that does not provide the patient with an electronic copy. The patient has to take this initiative to cut & paste (or maybe print – I can’t remember whether it allows prining).
    If the patient requests the records, Kaiser denies they exist. If you point out that electronic records are included in the patient’s medical record according to law, Kaiser delays for months while their lawyers comb through for any issues. If you ask for your medical records to be sent to a third party, Kaiser re-arranges the medical records to tell a story, or “craft a message” that will establish their legal position. And they simply withhold anything damaging: after all, after six months who will remember exactly what was in those records, much less have any way to prove that something was withheld?
    The way the politics is panning out is that people sound against technology, against economic progress, paranoid or just stupid if they aren’t on board with the EMR. The consultant-speak is get on the train or get run over by it. This makes me angry, because regular people who have to use the medical system as opposed to sell it are having the experiences I outlined above. And the various “checks” and “safety nets” aren’t working. It takes forever to get a reply from a government agency, if they bother to reply to you at all. Then the burden is on the consumer to compile their evidence (with zero feedback on whether they need more) and months of bureaucratic procedure. People are experiencing this, the damage is being done to them, and the EMR prophets are just reproducing the very problem of the EMR when they impose their Message overtop a reality it doesn’t fit. People notice when there’s a big gap between the promotional message and their lived experience.
    Any push for the EMR has to involve what it does *to* people as well as does *for* them.

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