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A Comment, A Challenge

by John Moore | August 05, 2011

While we receive many comments on this site to various postings, we received one this week that really caught our attention for a three reasons:

1) The author, Dr. Louis Siegel, speaks with some authority having not only been a practicing physician for many years but also an innovator/entrepreneur with a patent to his name and is now working to improve diabetes care via IT.

2) He takes a hard nose look at the practice of care, the apathy of patients and the need for a more engaging dialog between patient and provider that can begin with a common, shared and complete record. This sounds quite similar to our own argument to throw out the now dated and artificial terms of EHR and PHR to settle on one term, the Collaborative Health Record or CHR. 

3) In several conversations this week with a number of organizations regarding Monday’s post, one common theme has emerged: A significant cultural change needs to occur within the medical community if we wish to truly engage the patient as a critical, hell the most critical, member of the care team. That cultural change needs to begin with information sharing, information equality and it needs to begin with the clinician encouraging the patient to become an informed and knowledgable patient. 

Therefore, having contacted and asked for permission, which was readily granted, Chilmark has taken Dr. Siegel’s comment and moved it to the more visible and prominent position, that of a guest post. Dr. Siegel puts forth the challenge that the culture of care delivery and the apathy of patients needs to change as only then will we see broader adoption and use of patient engagement tools that go beyond simplistic marketing and towards shared decision making and ultimately, better outcomes.

Dr. Siegel:
Let me say a few things from the perspective of a physician, and one who has lectured on encouraging people to invest time and intellect in their health.

First, there is what I call the ‘Wall of Apathy’. People, alas, recklessly, dangerously, and wrongly, entrust their physicians with their healthcare and health facts. The Wall is very steep.

The Wall is steep because doctors like it that way and work to keep it that way.

What patients don’t know won’t kill them (‘them’ are the doctors).

Medicine is a closed society and the fundamental principle that a person’s health truths (labs, opinions, reports, etc..) are first the property of the person and second the property of providers has been negated and refuted at every turn by the healthcare profession and healthcare industry. Remember medical errors is the fifth leading cause of death so the last thing a doctor wants is a patient nosing around.

Both of these, the Wall of Apathy and the Closed Society explain why the PHR does nothing more than ‘crack’ the health truths door open a little and still keeps the patient out of the loop. PHRs are only a token, they provide little of the facts a person needs to know if their care is adequate and conforming to standards of care.

The whole notion of a PHR is a ridiculous attempt to share the person’s whole medical record pie. That is why there is no traction.

Healthcare delivery is created to be provider-centric not patient-centric and as such the record of a person’s healthcare is created to be the same way.

Forget PHRs and get ‘crackin’ on opening up a person’s entire record on a shared platform that is both provider and patient accessible and readable.

Being able to email your doctor and seeing an image of your labs does nothing to inform you of the fact that your prostate hasn’t been checked in three years and your last PSA, though in the ‘normal’ reference range is double the last one and possibly worrisome. Coding that is not difficult.

People would be horrified if their quarterly investment report was only a phone call from their broker’s assistant saying ‘everything is fine, let’s check in three months’ (no report, no on-line viewing, no quarterly calls), but are quite content to receive a call from their doctor’s secretary saying ‘the results of your blood work are fine’, and leave it at that.

How do you know that report she looked at was yours? It isn’t always.

Finally, medical reports reporting (what your doctor gets from labs, pathologists, radiologists, specialists etc.) is chaotic, non-standardized, and riddled with critical information buried deep inside that never sees the light of day, or the doctors or the patient’s eyes. Trust me on this.

One pathology report a patient I consulted on showed me a copy of a report their doctor received that had a big box checked ‘NORMAL’ and in the smallest font a sentence that said ‘Our criteria for normal is four malignant cells. This patient had three.’ The doctor looked at the box and missed the fine print. The patient read it, however.

Forget the notion of personal health records and rid ourselves of the notion that only SOME of my medical records are mine and some are my doctors. ALL my medical records are both personal, and mine.

After that, let’s get our IT heads together to work organizing the craziness in medical record reporting and dismantle the coveting of medical records by doctors and institutions and write smart systems that match diagnoses to standards of care and analyzes those records for errors of omission, trends, etc.

We can start with chronic diseases, like diabetes and others for which standards of medical care exist.

Let’s have a shared-care concept of care that shines the light of day on each person’s health truths.

All patients have that right.

10 responses to “A Comment, A Challenge”

  1. Dan Munro says:

    Great post – I will broadcast this as loudly as I can. Thank you for sharing your insight – and personal convictions. For those of us working on innovations around this divide – this should be required reading.

    In the end, it’s not what the technology is called (PHR, EHR, CHR …) that really matters – it’s the value it brings to the patient. We’ve all heard the quote – which I believe is true. The patient is the most valuable and underutilized resource in our healthcare system today.

    I also think this speaks to the larger issue of healthcare reform. Moving the system as a whole from volume to value will, by necessity, have to engage the patient more directly. One of the first steps in that process is simply more transparency – in every direction.

  2. This is the direction I have been thinking IT tools would best add value – engage the patient with the physician. The typical scheme is that the EHR is a tool used to generate a digital document, by the doctor, alone, after grinding through a face-to-face encounter trying to establish an understanding and a treatment plan. The (only imaginary) encounter-centric app could be designed to optimize that encounter, and keep a portal open to the patient for online follow-up, including accountability for adhering to a plan. Failing to adhere is usually not due to the doc making a fierce pitch to the patient during the office visit, but then who would know unless an app were designed to let the patient check-in and check-off how things are going at home. Does anything in Meaningful Use, the standard currently driving all U.S. EHR development, support such a scheme? If not, I think it would be a good idea, and hope others agree.

  3. Chris Johnson says:

    All the IT in the world will not engage the patient with the physician in a significant way until the insurance companies, HMOs and regulators get the hell out of the way. And that’s not going to happen until we get serious about actual “health care,” instead of health insurance profitability. (I spent about 11 years in the “insurance” end of the health care industry, and still feel like I need to take a shower to wash off the stench.)

  4. […] Article Louis Siegel, Chilmark Research, 5 August 2011 […]

  5. […] A Comment, A Challenge (chilmarkresearch.com) Share and Enjoy: […]

  6. Lehr says:

    Ditto Dan! Sharing the story as quickly as I can.

    Wondering on pt #2: “Collaborative Health Record or CHR”. Should we as suggested “throw out the now dated and artificial terms of EHR and PHR”? I’d say the answer is yes if we also suggest innovative solutions that achieve Dr Siegel’s “Shared-care concept of Care”.

    Dr Siegel’s vision sounds like NQF’s description of “Care Coordination”:

    “Care coordination helps ensure a patient’s needs and preferences for care are understood, and that those needs and preferences are shared between providers, patients, and families as a patient moves from one healthcare setting to another. Care among many different providers must be well-coordinated to avoid waste, over-, under-, or misuse of prescribed medications, and conflicting plans of care”

    Legacy EHR systems generally don’t share information well among different providers and standalone PHRs just add to more and more digitized silos of information. Is there a chance of hybrid models being successful?:

    1) HIEs with EHR/EHR-lite functionality (Medicity’s free iNexx – http://www.medicity.com/inexx-introduction.html)

    2) EHR with HIE functionality (Mitochon Systems free ehr/hie/phr – http://mitochonsystems.com/why-mitochon/)

    any other interesting solutions out there that get us closer to Dr Siegel’s vision?


  7. […] Concept of Care” by Dr Louis Siegel John Moore of Chilmark Research wrote “A Comment, A Challenge” and shared a thought-provoking commentary from Dr Siegel on the topic of PHRs. The […]

  8. […] Moore over at Chillmark Research had a great guest post from Dr. Louis […]

  9. […] portal (i.e., only applicable to that provider) isn’t patient centric. Providing patients a Collaborative Health Record that not only pulls in information from your practice but also has the ability to share […]

  10. […] portal (i.e., only applicable to that provider) isn’t patient centric. Providing patients a Collaborative Health Record that not only pulls in information from your practice but also has the ability to share […]

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