Declare Your Rights to YOUR Health Data

A small group of individuals including Adam Bosworth, Jamie Heywood, David C. Kibbe, Gilles Frydman, Alan Greene, and Sarah Greene, began drafting the Declaration and reaching out to others for feedback and improvement. The refined Bill is available at this site and is summarized at the end of this posting A Declaration of Health Data Rights

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A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
   
   
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

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What a great concept founded on the same principles from a couple of hundred years ago as part of the formation history of this country. It is the end of the secret code and hidden meanings in patients notes (think GOMER, Turf, Bounce and many others). Something that was highlighted in the ground breaking book by Samuel Shem; "The House of God" that was released in 1978 and was one of the first to reveal some of the struggles in the medical field and coping mechanisms that included coded abbreviations describing patients in less than complimentary terms. But all of that is a good thing and the full sharing of notes and information with the rightful owner has some added value - things that are wrong can be corrected. e-PatinetDave generated a big swell of interest when he highlighted the junk that exists in your medical records as he started to review his own making the point that we must get our data, manage it and review it. In fact as I said before - we need to become our own Primary Care Physician. Dave deBronkhart needless to say is an early supporter and in his post on the declaration makes the point:

These rights are as inalienable as the right to life itself.
Whose life depends on the data's accuracy, its availability?
Whose data is it, anyway?

I could not agree more and am reminded of a discussion I had three times prior to the birth of each of my children. I had the privilege of delivering my kids but took no clinical responsibility. The hurdle and message I had to get through to the obstetrician (OBGYN here) and midwife was that there was possibly only one other person in the room with bigger vested interest in the successful outcome - that would be my wife. So they had to know and believe that I would not get in the way or hinder their ability to deliver care in the event that medical intervention was required. Fortunately in all three cases we had normal and successful deliveries but had that not been the case I was ready to step aside at a moments notice. The same principle applies to my medical record - I want it to be correct and am more likely to have the time and knowledge to review and correct any mistakes.

There is of course a fly in the ointment here - one of knowledge of terminology (something that technology and support infrastructure may help along with review in conjunction with experienced clinical professionals). BTW - I see an emerging role for a patient supporter who has additional knowledge and training to help with this. Interestingly the Medical Editor has much of the knowledge necessary to help process and understand this data and this might well become one of the future roles of these knowledge workers. But there is also the issue of pre-existing medical condition coverage and the general mess that exists in the US related to patients inability to get coverage when they have a conditions - and in some cases being "turfed" out of the insurance plan after they are diagnosed with a condition. This creates an incentive to lie about conditions and conceal diagnostic information. The answer here of course is to fix the insurance problem and create an all encompassing affordable insurance system that spreads risk across the whole population not just the healthy. There is no incentive in the United Kingdom's NHS system to conceal clinical data for fear of lack of coverage since the system treats all.

As someone put it on the site - you can bet that Steve Jobs insisted on getting his Medical Records in Digital form and in a form that he could review and transfer to other doctors. I bet he got it too. But this is about everyone else's rights and our need for easy access to our information.

Go endorse these rights here or add a tweet with the HashTag #myHealthData and become a fan of the FaceBook Page that is here

Doctors in the Typing Pool

An interesting blog from Westby Fisher on the failures of EMR systems that what it has turned our clinical staff into:

"...the world's most expensive typing pool has been born"

As he notes

Each morning, without fail, there's one or two individuals circling the computer terminals waiting for access to these electronic monetary portals, like children waiting to grab the last chair when the music stops.

That's true but I think the missing comparison here is how it used to be before the advent of the EMR's.....I can remember the same scene on the wards I worked on but instead of waiting for a seat in front of a computer it was waiting to get access to the "notes trolley" and the wait and frustration was no different and in many respects worse since there was only one record and therefore only one person could access it and enter data into the record. Much of this could be fixed with more accessibility, more computers or even better mobile access to the clinical data (here's one example combining the latest user friendly gadget with EMR access - you can see a video of this in action here:

But the issue of canned content being generated in large quantities with shortcut codes and pulling information from other sources to create a document is a problem. To create my note I can type
.id .pmh .psh .cmed .all .soc ....... you get the picture. These commands pulling data from other sources that add little to the actual clincal value of the document:

....demographics from the Central Registration.....four pages of Past Medical History...the original work was completed by the patient's poor primary care physician, neatly organized, but never to be updated again

.......page and a half of the current medications, their dose, prescribing physician, half of which come from self-generated 'CYA' hypoglycemia orders are also self-generated in the interest of 'safety'.....

......."Mother died of CA" automatically spits out previously entered by the hospitalist - bless their soul - so that billing to Medicare can go from Level 4 to Level 5 for the rest of the health care team

When clinical documentation really was clinical documentation and not just an automatic regurgitation of previous clinical notes captured by other people, the process of documenting was part of the clinicians analytical process. Entering the details was important as it afforded an opportunity to think about the patient, their history, symptoms, and signs and provided real input to the diagnostic process to arrive at a differential diagnosis and plan for the next steps. Clinicians are still trying to do this but all the while working to satisfy the documentation requirements so they can bill for their services

The rest is for Medicare and has been added repetitively and
identically by countless other individuals, all whom enter the same
content to assure achieving the maximum amount billed by law for their
services. Not that any of it is read, mind you, but it'd better be
there, lest the Medicare auditors descend on your facility.

Technology has helped kill the richness and detail of clinical documents and turned detail rich
reports into dumbed down "fill in the blank" cookie cutter reports that do not
reflect the richness of the information that physicians wants to provide to the colleagues.

In a recent discussion with a busy radiologists he remarked that what the referring physician needs from him is "more detail". He wants to provide the referring physician
the clinical information they need to treat the patient giving them the confidence in the information they receive with a rich detailed report that speaks their language.

So as not to reach the destination for the future of medicine painted by Westby Fisher:

Will they (future doctors) actually process what is entered, or merely become
highly-efficient typists and plagiarists in the never-ending quest to
become more "efficient" health care providers?

we must provide the tools that allow for clinicians to document clinical information efficiently with the richness of medical language while still providing the computers and clinical systems with their bits and bytes of data that allows these tools to function and help support the clinicians in the delivery of clinical cared

Wired - Why Things Suck

Wired's magazine article earlier this year titled: The 33 Things that Make us Crazy
featured a section on Medical records

The review was spot on:

Most medical records are about as orderly as an ER on Saturday night. Because they're mainly confined to paper, they can't be easily transferred from one physician or hospital to another. And because they're not subject to any standards (or even legibility requirements), they're nearly impossible to compare and combine.

Harsh but true.....and the ongoing problem of getting everyone to cooperate and share information which is int he best interest of the patient but not necessarily in the best interest og the hospital, healthcare provider or even insurance company:

..because the software vendors selling electronic record-keeping systems are competing, their systems are proprietary and incompatible. Oddly, that's OK with many physicians. Another name for an all-knowing, all-seeing, all-compatible electronic system is database, and physicians don't want people mining theirs — not because of patient-privacy concerns, but because the info could be used for doctor-on-doctor performance stats. Plus, docs already hate filling out charts; you think they want to learn data entry?

The potential cure cited is the arrival of Microsoft and Google as knight's in shining armour - not sure I buy this but I do believe that the entry of large organizations intent on shaking things up is going to have a positive impact. But the key point of advice:

Pressure your docs into accepting a more transparent system.

Agreed - interoperability and the sharing of data is essential. We have been sharing information since the beginning of time. Before the advent of writing, stories were shared, drawings made on walls and information was shared round a camp fire. When new more reliable media arrived (the pen and paper) information sharing moved to this media. Now we have digital media and bits and bytes and we need to wean the industry off its dependence on paper which is no longer effective and start sharing information using standardized compatible formats that everyone can use.