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Health 1.0h. . .Geez, This Is a Mess

Stoltz 

A family member just had surgery, but don’t worry, this isn’t about that.

I want to share just one observation from the experience:  Between the decision to have surgery and the moment scalpel touched flesh, the patient’s medical history was taken four times. None of these documents contains identical information.

Medical History 1. At the specialist’s office, forms were filled out in the waiting room, then completed and annotated during the in-office consult. The primary care physician’s record was not provided or asked for. We didn’t have the records from previous episodes of the medical issue in question–this all came up suddenly, and. . .we couldn’t find them.

But the hospital said they’d faxed the latest ER report, didn’t they? Can’t find it here.

Medical History 2. The day before surgery, a hospital prep nurse
called and created a new medical history by phone. My wife was there,
so she was able to correct and change some details. One of these
details was. . .the correct name of the earlier diagnosis, at least as
far as my wife could remember. I had it wrong the first time. My bad.

Medical History 3. The day of the surgery, a nurse came by and, with
the phone-interview medical history in hand, went through the whole
thing again. We remembered things a bit more clearly this time. The
patient was there too, and remembered some things differently–some
adamantly (no, he didn’t have to rest in bed that time, and he knows it
felt funny for two weeks, not two days). And let’s see, he was 6 years
old the first time (not 4!) and this happened two times in the last
month, not three.

Medical History 4. After the nurse left, a physician’s assistant
rolled in a black cart bearing on old Dell PC with a splatter-shield of
yellowed plastic. Then she asked all the same questions. While she had
the handwritten documents previously created, she essentially glanced
at them occasionally and mostly typed in what we told her. ("No
allergies? "Yes, seasonal allergies, and he takes Allegra–not
Singulair, right honey? He took the Allegra yesterday, not today,
right?.") Life being what it is, and brains being what they are, we
changed a few more details again (no, that was three times, but it
happened once the month before too). After she was done, she. .
.printed out the report, put it on top of the now-thick file.

I’ll spare you more details. But today there is a "medical record"
of my family member’s experiences containing some accurate data,
multiple unresolved contradictions and a whole bunch of best
recollections. The last report, the one that got printed out, is mostly
accurate, I think.

I work in the world of Health 2.0, one dedicated to building
communities, leveraging collective wisdom, connecting people with data,
enabling virtual care, creating actionable visualizations, yada yada
yada.

Frankly, until the medical "system" can create an accurate patient
record–in sharable, electronic form–I have to wonder about the value
of the more advanced stuff so many of us are working on. It’s like
trying to attach a rocket to a car with no wheels.

I know the whole EMR thing is being worked on–I know some people
who are working on it, and godspeed to them, I say. Microsoft and
Google too, whose PHRs may provide some stopgap until the
"stakeholders" in the healthcare delivery system can get their hands
out of each others’ pockets long enough to build the fairly simple
thing we all know we need.

It’s almost too obvious to say: The prerequisite for 2.0 is Health 1.0. We haven’t passed the first course yet.


Craig Stoltz is a web consultant working in the health 2.0 space. He
has previously served as the health editor of the Washington Post and
editorial director of Revolution Health. He blogs at Web 2.0 … Oh
really? We’d like to congratulate Craig for being named to Time’s list of the top twenty five bloggers in the country this
week.

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16 replies »

  1. RBAER, I agree with your points (from 4/11 post). My post was too strong if it implied that forgetting over time is the only or the major factor in affecting accuracy of repeated health histories. Forgetting is only 1 of many factors. You correctly pointed out that if a patient gets a better retrieval cue (from a care provider or a family member) before or during a second history, they can recall health info more accurately the second time.

  2. I totally agree. I think that when the EMR situation is handled, and good online health communities develop, then a lot more responsibility will come back to health care!
    dk

  3. Lee, I just wanted to comment re. your skepticism of a repeated history unveiling more than the initial one, because it’s an interesting topic.
    I am not talking about the cholecystectomy 27 ys. ago. I have often enough seen patient deny a certain symptom that they definitely can recall after some consideration. I am not talking about suggestible patients who will admit to anything when asked (these make diagnosis making terribly difficult, especially when they have a real but subtle disease). I am talking about patients coming back and telling me things like: You asked me whether I lately had symptom X and I said no. Well, I remember experiencing this 2 months ago and didn’t think a lot about about it at that time/ My husband told me that he observed me having X just a few weeks ago/ Doctor, I was thinking at home: does X” qualify as X? I do have X” all the time!

  4. Adoption of IT is occurring and actually accelerating but the problem is that most of these solutions being adopted do not make the end user’s (provider’s) life easier, they often do not facilitate best practices and thus though the technology is being adopted, actual use is sporadic at best. Then we can look at standards, which have only recently reached a maturity where they are actually useful and let’s not even get into coding for conditions as these standards are literally all over the map.
    Is it any wonder that we are not even close to Web2.0, let alone Web1.0? How about Web0.5?
    Honestly, what this story points out is a few of things:
    First, it does appear that good practice is to frequently re-check the records to insure that All information is accurate. Based on my read of the story, looks like there were a few changes initiated by the patient/family themselves. Maybe this recheck, though excessive in this story is warranted.
    Second, if we have any hope of moving the collective ball forward it will be up to consumers to begin demanding such. Right now, several studies have shown that the benefits of EMR adoption do not go to the doctor/practice, but payers. Maybe it is time for consumers to start using their wallets to bring greater demand for such systems.
    Third, again the consumer may want to start taking greater responsibility for managing their own records, demanding digital copies when they leave a physician’s office or hospital, loading them up to their PHR and have them readily available when needed. There are in fact a couple of PHR vendors now that will let you, during an office visit, tap into your PHR via a cell phone and have a given document/history/medication list, what have you faxed directly to the doctor’s office. Now wouldn’t that make life just a little easier.
    Been following the PHR market pretty closely – more details over at http://www.ChilmarkResearch.com

  5. I think that one viable solution lies in the Advanced Medical Home concept. If a patient’s primary care physician keeps an updated record of his/her patients’ medical histories, it would be easy enough to send the information with the patient to a specialist or hospital via a thumb drive carried by the patient. This activity fits the Advanced Medical Home concept of the patient being active in his/her care. Another approach would be to use EMRs that have secure communication services to send the medical record to a hospital, pharmacist or specialist. I just read an email from a colleague that WellCentive just developed such. With the history electronically stored at one place, there is less likelihood or errors; as well, it would keep the primary care physician as a central player in a patient’s health, which would eliminate many errors, in my opinion. Of course, it would be profitable for the specialist or hospital staff to review the forwarded record with the patient to weed out any possible errors. Lastly, after the patient has received care services, the hospital or provider can update the record and send it back to the primary care provider for storing.

  6. As a former cancer care professional now working full-time in Health 2.0, I would have to agree that while there are systems would certainly streamline the history taking, you cannot deny the importance of verification of history. You would be amazed what patients tell one provider vs. another. Most of the variance is simply due to the way a particular question is phrased. I had a patient refer to Prozac as an “over the counter” medication because the pharmacist gave it to her over the counter. However, that same patient had previously denied taking any medications to the intake nurse.

  7. I like the airplane analogy;
    “But captain we just did those safety checks yesterday.”
    Got to agree with Eric (Oh no!),”trust but verify”.

  8. As an aside, the intake form is one the key areas that Microsoft is focusing on in order to try and demonstrate some of the initial value of HealthVault to providers.

  9. What I find frustrating is that there is significant number of companies that provide solutions to the scenario that Craig describes in his article. It is amazing that an industry focused on ensuring the recovery and survival of individuals has been excruciatingly slow in adopting technology that would better enable it to achieve its mission.
    I have heard all of the arguements about a majority of hospitals do not have the capital outlay in which to invest in these technologies but that argument is becoming intenable at best these days. I am the first to agree that the compensation scheme is healthcare is misdirected and properly aligned would address many of the problems that face our system today. If reimbursement was tied more to quality of care, the outcomes on an individual not just a process being followed, and prevention with consumer transparency than hospitals would find it imperative to invest in tools that better enabled them to meet these goals.

  10. The assumption (discussed above) that the accuracy of recalling prior health events INCREASES with repeated recalls flies in the face of what we know about human memory. Forgetting increases over time, so later recalls would be expected to be less accurate than recalls closer to the original event. Also, later recalls are probably accessing and mixing together memories of the original events as well as memories of what was reported in earlier histories. I wonder if anyone has empirically studied this process of repeatedly recalling health info to see how the accuracy changes over time.

  11. Agree with waittimes (wt). Craig, I think you are mistaken when you see the history taken as a reliable exchange of information – it rarely is.
    Some thoughts:
    -the repeated history taking is in fact industry standard and one of the procedures most reminiscent of the famous pilots’ checklists discussed no this blog. Without the standardised approach of complete history taking, I could do a very time saving problem centered approach, but have a small but seizable chance of not discovering a serious preexisting condition or piece of history.
    -some patients get more clear about their symptoms when asked a second or third time, by the same or different physicians.
    -I personally think that a page that just saves transcripts of visit and test results would not be too extensive. I actually think it is reasonable to mandate this kind of database for medicare and other publicly insured patients. We could avoid quite a few duplicate exams – a lot of doctors unfortunately do not even try to get previous scans when seeing a new patient for the same problem, they just think it is easier, patient friendlier (a lot of patients, believe it or not, do like scans) and legally more defensive to get new ones.
    -i am not saying that there isn’t history taking that is superfluous and could be avoided … it is up to the health care profs to make that call and make things more efficient, and more importantly, focus on the sources of mistakes (incl. wrong limb amputation etc.) and make adjustments there.

  12. “until the health “system” can create a more accurate record….” Where does the responsibility lie? The patient has to be the custodian of their medical information, even if stored on-line. The cost of eReporting every medical record, consultation and note to a central repository is not small and we are already in a credit crunch over healthcare.
    We’ve found many ways to record the medical history beyond paper and pen but it’s the usual garbage in garbage out. Repetition in an industrial setting increases the chance of error but in when reviewing medical histories it finds errors. Before I perform an operation I’ll ask about medications and allergies at almost every visit. An un-intended consequence of a transportable medical record could be the propagation of significant errors because we are more likely to trust it. Rather than making analogies to Lean and Six Sigma I think the better one is to cross-checks in the airline industry. My suspicion is that the majority of people would accept the responsibility of maintenance of their records in exchange for greater access to care at a more reasonable cost.
    http://www.waittimes.blogspot.com

  13. I was at a hospital with my spouse this week for a minor procedure.
    This very same process was repeated at least 3 times.
    What was worse was the woman in the next bay over. She had shingles in January, vertigo in February where she fell and pierced her eyeball (it was removed), and now in April was having her pacemaker battery replaced. I don’t know whether she’s getting a prosthetic eyeball (I hope so), but she also had a hysterectomy in 1976. Her gallbladder has bothered her in the past, but not enough for surgery. She repeated this, with help from her husband, 3 times. The eyeball accident was enough to make me almost lose my breakfast the first time I heard it.
    I think you could add patient PRIVACY as another plus to electronic records!

  14. As long as what Craig describes is “the standard of care”, then it will remain the standard of care … and tens of thousands of people will continue to die each year from preventable medical errors, billions of dollars will continue to be wasted from re-work, etc.
    As long as “those who pay for healthcare” find the status quo acceptable enough to continue paying for it, then what Craig describes will continue.
    We have the healthcare (non-) system that we pay for. And it sucks.
    Although I work in Health IT, every time I experience the healthcare system (as a patient or family member of a patient), it makes me sick. I don’t expect much and I nearly always leave disappointed.

  15. We have to begin someplace but we must begin! I get tired of filling out the medical forms myself but understand why they are there. Our providers must consistenly ask us our history as sometimes we leave things out, we get dates wrong, maybe even a diagnosis wrong.
    It would be nice if there was a platform system where every hospital could be connected to so they consistenly have the most recent updated information. It would be nice if a providers office could be included in a platform system as well.
    Unfortunately that is HUGE money that many healthcare providers will not want to venture into. That would be a longtime coming for a system like that.

  16. Craig- you got it right, here. “health 1.0”, as you put it, is simple… as I have written here in the past: keep a personal record of major medical issues, treatments, medications (and who prescribed them and why).
    No new government programs, no trouble with recollection bias, no fears that a computer will be hacked and your personal life will be spilled throughout the internet.
    Even with a magical, complete medical record, the re-asking of medical histories will continue– and for good reason… before I take the responsibility and liability of performing an operation on you, “trust but verify” is required. You should not let me near you if I offer anything less.

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