A Comment, A Challenge

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. 

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.