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Whose Data is it Anyway ?

Doug klinger

As we know, the Federal Government is planning to spend $19 billion to help the healthcare system  upgrade its 20th century, non-standard, paper-based and proprietary system-based health records systems to a more standardized, electronic solution which will empower the healthcare system and consumers alike. This may be a side benefit of electing our first Blackberry-toting commander-in-chief. But, it’s not clear that everyone is ready to get behind the President on this one.

The New York Times just published an article entitled “Doctors Raise Doubts on Digital Health Data”.  The New England Journal of Medicine just published two articles outlining the challenges with making the electronic records dream a reality.

In a recent post on this blog entitled, “Better Records on Our Cars Than Ourselves“, we discussed the critical importance of better connecting consumers to the healthcare decision-making and delivery process. Without engaging consumers effectively, it will be difficult to drive meaningful changes in healthcare consumption, healthcare effectiveness and ultimately, healthcare cost.

While the recent flurry of media coverage on the subject of electronic health records points to many of the reasons why the Government’s plan cannot or will not succeed, let’s take a minute to focus on why it should succeed:

1. Health information belongs to the consumers whose health is in question. While the information may be generated by doctors and other members of the delivery system, it is generated on patients and generally paid for by the patients themselves or their insurers (private or government).

2. Patients can and should be able to access and share their health information. Is it really appropriate, as some have argued, for some doctors or other members of the delivery system to decide if we, as patients, are “qualified’ to have access to our own health information ?

3. Getting health records into a more standardized, usable and transferrable format will surely take time and cost a lot of money. One potential benefit of this investment of time and money may be a new partnership between those who deliver healthcare and those who consume heathcare. In an industry which is today characterized by battling between constituents over who gets what care and who pays for that care, a bit of partnership might go a long way. Cal it a pollyanna-ish view, but without a vision to make things better we are may well be destined to mediocrity.

Why not focus on what we can accomplish vs what we cannot ? Why not begin architecting a plan to migrate from reliance on proprietary systems and paper records to an open, electronic solution that brings healthcare information together vs keeping it in protected silos ?

In closing, as the New York Times and New England Journal articles discuss, it seems appropriate to debate how the new electronic information will be used to improve healthcare quality. But, this debate can proceed in parallel with an effort to make the information more readily available in the first place. Without substantive changes to how we collect, store and transfer health information, the healthcare quality debate may stay just that – a debate.

Doug Klinger serves on the board of MedCommons. Before joining MedCommons, spent ten years with CIGNA, where he served as CEO of CIGNA Dental, among other roles. His resume includes a stint with Monster.com, where he led the company’s North American unit.

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ReinhardGregg MastersPeterPerseusMD as HELL Recent comment authors
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Reinhard
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Reinhard

You can find addtitonal informations at http://www.private–krankenversicherung.info

Merle Bushkin
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Peter and Margalit, as a consumer/patient I want as much substantive information in my medical record as my care providers generate. I don’t want it sanitized or edited for publication – because I want any other care provider who needs information about me to know not only my vitals, meds, and history, etc. but also the thought process my doc’s followed in diagnosing my condition(s). That vital information may help another physician diagnose the same or similar condition that may occur subsequently. I want them to read that Dr. A diagnosed the pain in my back as a possible kidney… Read more »

Margalit Gur-Arie
Guest

I agree with Peter, this is an interesting discussion. IMHO, the medical record or the chart has two components: 1) The hard, cold facts – Problem list, vitals, meds, test results, immunizations, etc. – The patient should have unrestricted full access to this data. It really belongs to the patient. This is the most valuable information and it would be very meaningful to another provider. 2) Documentation of clinical decision process and other information that is not directly related to the objective patient status. I would include in this HPI, ROS, notes on differential Dx, exclusions, etc. and various comments… Read more »

Peter
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Peter

For once I am finding the discussion on the “concept” of Health IT interesting, even though I am skeptical about the sales pitch it will save us money. If health information is to be considered the IP of the patient who leases it for viewing/changing/adding/subtracting to health professionals will that change the way docs record their input on health records? MD, do you put observations in patients records that are “pertinent” to the medical treatment of the patient but which the patient could misunderstand or find “insulting” if they read it? And if patients had to “sign-off” on changes to… Read more »

MD as HELL
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MD as HELL

Let’s not forget that the consumer paid cash for the ipod and itunes and any other media stored on it. They did not get it from the government. No insurance company would have covered it.
A government designed ipod would have cost ten times as much, edited the content, carried a warning about computer vision syndrome and earbud irritation, and have to be powered by photosysthesis to deminish the carbon footprint.

Gregg Masters
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MD as Hell Writes “The doctor’s work is proprietary… the intellectual property of the doctor.” An interesting POV; yet IMJ it couldn’t be further off the mark. The Wisconsin law referenced by Dr. Dan Johnson gets closest to the issue’s correct nature and granularity. I will take Wisconsin’s statutory wisdom one step further: the patient is the sole principal/owner of all “intellectual property” (IP) which by necessity includes all tissue, fluids, and related health information; whether clinical, administrative or legal. The IP is then situationally and proactively “leased” or “licensed” to the provider during the care process. All providers, whether… Read more »

Merle Bushkin
Guest

Peter, the consumer-focused system I envision does not require patients to enter their medical record data. Moreover, I don’t want them to even try. I want care provider-created records that clinicians can rely on! In our system, the doc’s staff uploads patient records using automated data entry, and the doc gets paid a fee for them doing so. To the extent the patient wants to enter non-clinical info (social history, insurance and contact info, etc.) they can do so. Studies we and others conducted tell us that if an individual can’t handle a computer, their children or friends will do… Read more »

Peter
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Peter

Merle, which group of patients are you talking about (the patient is far more interested in his/her health than any care provider)? They may be interested but having the skill set to manage records is another thing. What do you do with the aged, uneducated, undereducated, computer illiterate? As for the check box comment I was envisioning computer nerds making the health system conform to the software using the box a,b,c system to enter health information – is that not part of health IT to get it to work easily?

Merle Bushkin
Guest

Ravi – re: “I am pretty sure that these can be achieved with far less money and can address all the concerns. It is question of infusing innovation in the product development process.” I agree that we need an innovative solution to the problem that has befuddled healthcare for years, and that is precisely what we have done! To learn more about our breakthrough solution, visit our web site: healthrecordcorp.com and medkaz.com. MD as HELL – You put the doc at the center of a patient’s healthcare universe and seem to consider the patient disinterested and/or irresponsible about his/her health.… Read more »

Peter
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Peter

I agree with MD as Hell and I don’t think letting the patient carry around and manage their own records is workable – who’s going to manage the backup copy. If someone asked you to provide tha last five years of tax information would you be able to even find it? MD has made a great point about the difference between patient and doctor records. I think the best solution so far is to scan records at source and electronically transfer them when necessay. Trying to make records nothing more than checking the appropriate boxes (my life has never fit… Read more »

Perseus
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Perseus

Yeah, then next we can automate the lawyers! I’m sorry, but there’s no profit in your ideas.

MD as HELL
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MD as HELL

All this emphasis on EHR and centralized storage and access will do is create the need for two records on each patient: the public and the real. The doctor’s work is proprietary, the intellectual property of the doctor. Value is added by her/his interpretation of findings. Just sitting in the room with the patient often provides information that the simple verbage will miss. The experienced doc will get it; the newby or wannabe or midlevel will miss it. Yet such clinical judgement is risky. Patients will often lie or recant under public scrutiny what they privately reveal. I can imagine… Read more »

Healthcare Guru
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I am pretty sure that these can be achieved with far less money and can address all the concerns. It is question of infusing innovation in the product development process.
rgds
ravi
blogs.biproinc.com/healthcare
http://www.biproinc.com

Merle Bushkin
Guest

Margalit, all the studies I read clearly indicate consumers increasingly want control over who can access or use their medical records, and they want to be certain the information is correct. Moreover, HIPAA requires that a physician give copies of a patient’s records to the patient if the patient requests it. Thus, like it or not, a patient will get a copy of his/her record and is free to use it as they wish. Having found numerous serious errors in my personal medical records which would have gone uncorrected if I hadn’t caught them, I think this trend is healthy… Read more »

Shelley Myers
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Shelley Myers

Excellent post Doug and I couldn’t agree more. A consumer or patient’s personal health information does belong to them and they need to work as a team with their physician and share data in a secure and meaningful way. I don’t agree that patients should be walking around with their PHI in a box or on a USB drive (just too risky) but there are studies currently being conducted around how physicians and patients can share data electronically between the physician’s EHR and the patient’s PHR (that they own and is portable) in a very secure way that provides patients… Read more »