Ebola Offers a Teachable Moment For Health Information Technology

Ebola Offers a Teachable Moment For Health Information Technology

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new adrian gropper

The essence of controlling Ebola is surveillance. To accept surveillance, the population must trust the system responsible for surveillance. That simple fact is as true in Liberia as it is in the US. The problem is that health care surveillance has been privatized and interoperability is at the mercy of commerce.

Today I listened to the JASON Task Force meeting. The two hours were dedicated to a review of their report to be presented next week at a joint HIT Committee Meeting.

The draft report is well worth reading. Today’s discussion was almost exclusively on Recommendations 1 and 6. I can paraphrase the main theme of the discussion as “Interoperability moves at the speed of commerce and the commercial interests are not in any particular hurry – what can we do about it?”

Health information technology in the US is all about commerce. In a market that is wasting $1 Trillion per year in unwarranted and overpriced services, interoperability and transparency are a risk. Public health does not pay the bills for EHR vendors or their hospital customers.

Commerce dictates that patient surveillance should be done by two kinds of institutions, neither of which is accessible to the patient. We have health information exchanges and data brokers. Health information exchanges, be they vendor operated or public, almost without exception, exclude the patient. The same is true of data brokers as has been covered in the work of Patient Privacy Rights . The Data Map shows us a hidden web of health data surveillance designed to keep the wheels of commerce moving with as little visibility and accountability as possible. Involuntary and hidden surveillance is nowhere more evident than in the “patient matching”  practiced across the Data Map.

Hidden surveillance for commercial gain leads to mistrust and that in turn chills the public’s willingness to link cell phone data, social contacts, genetics, travel, and family into the health care and public health domain. It’s not so great for medical research either.

Ebola offers us an opportunity to review our health data priorities. Privacy, in the form of Fair Information Practice Principles, must become a national priority and provide all of us with access to our health data before it goes to other institutions, health information exchanges, and data brokers so that we can control secondary use. Patients have a right to be notified of patient matching and to a complete real-time on-line accounting for disclosures. The notices routinely provided by Apple or my bank on key account activity need to become the norm for health IT. We have regulations that separate public health and law enforcement data uses from commercial and research uses. These separation laws must be upgraded for the digital age.

Most important of all, patient health records must be linked to and controlled by the patient rather than some institution. Instead of treating physicians as agents of the institution, health record access must respect the privacy of the physician-patient relationship. Authorized physicians must have direct access to patient records without intermediation by proprietary software and commercial interests. Authorized physicians must be technically able to communicate with other physicians and with public health authorities without institutional interference and side-effects of secondary use. The trust we build will do a world of good.

Adrian Gropper, MD is the CTO of Patient Privacy Rights

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19 Comments on "Ebola Offers a Teachable Moment For Health Information Technology"


Guest

But the thing to realize here is that because of today’s technology, anybody, and
Imean anybody, can be an Internet mmarketer no matter what
skill level you’re at. There is never a day on earth where there are
no opportunities for you. Television host,
actress, producer, famous woman entrepreneur and philanthropist.
Jane Douhgh is clear in her priorities and may be intentionally
and actively growing an asset-based or legacy business.

Guest

This approach requires, that your site or blog theme iis Ad
– Sensde friendly, because tere aare big differences between the different
niches. Foor instance, if you start taking paid online
surveys or doing some data entry jobs,you wikl see some cash in a short period of time.
Using you expertise you can teach otfher people who will pay you for consulting
if it helps them accomplish things they need done.
Creating and marketing information products online is another way to generate
a vedy lucrative online income.

Guest
Dec 17, 2014

It’s imperqtive that your potential clients get to know and trust you, and one of the best ways
to do this is to lett them experience some of your magic – aat no charge.
Especially when it comes to smalpl business marketing
– a rapidly evolving and expanding field – it seems like there is waay more information out there than any small business owner could feasibly comprehend and follow.

However, these days, many smll business owners are trying
oout different ways on how to advertise and
market thir products in such a way that it would be efficient
even if it does not cost much. In turn, they can use the cash to purchase additional inventory.

Guest

When I started my veery small business, I should have at least written plan with aan overall mission statement that included marketing, fnancing
and financial accounting. Especially when it comes to small business marketing – a rapidly evolving and expanding field –
it seems like there is way more iformation out there than any small business owner could feasibly comprehend
and follow. They might not requiure lots of money, but without a small budget, none
of these strategies will produce stellar results. Tax Credits-Starting immediately in 2010, small businesses
with leses than 25 employees paying 50% or more of premiums will receive
a tax credit upp to 35% of the premium.

Guest

There is a growing trend of dressing up in business casuls which is a kind off dressing style that is
acceptable iin some work environments. But the first impression of your business, organization or fim often does not start with you, but rather
with the receptionist or administrative assistant.
Though I was working from home and could have dressed somewhat
more casually, I chose this outfit with intention. Mid-length and full length skirts, most often with
a centre vent to alpow for easy movement.

Guest
Oct 11, 2014

Here are some of my thoughts on the subject. Note that Bush’s original announcement of the idea was a personally controlled record:

http://www.nextgov.com/health/health-it/2014/10/surprise-every-american-
will-not-have-electronic-health-record-year/96197/

Guest
Oct 11, 2014

Adrian Gropper is THE leading voice for realizing the full potential of EHRs to improve health and to regain the severe erosion of medicine as a profession in the USA. So many hurdles stand in his/our way- especially medicine as a business which is dying very hard and very slowly- but dying nonetheless in our nation..

But still we need to help Adrian Gropper now. Regarding realization of interoperable EHRs/HITs and the emergence of a secure patient owned and controlled individualized EHR the former is painfully obvious – the latter is revolutionary as it relates to the necessary replacement of a paternalistic model in medicine to a model of adult-adult relationships between doctor and patient.

All of this becomes even more complicated in matters of public health like Ebola as just one example because of necessary public heath ethics that fly right in the face of the ethics of the Hippocratic oath that all US physician take but few now follow.

GO FOR IT ADRIAN!.

Guest
Oct 11, 2014

What don’t you understand?

Guest
Oct 10, 2014

Adrian,

I don’t see the problem as “commerce.” There is nothing wrong with free enterprise and the profit motive. It’s what enabled the US to prosper beyond anyone’s imagination and led to unparalleled social, economic, artistic and technological advances. And it most certainly can help us improve care quality while lowering its cost — but not the way we are going about it.

I attribute our problems to government forcing care providers to adopt an approach to interoperability that doesn’t work, namely, to use of HIEs as the way to effect interoperability — and insisting that providers persist even though the problems this approach create are virtually insoluble. Making matters worse, this misdirected effort freezes out innovative solutions that do work!

The fact is that we can achieve interoperability today by approaching the challenge differently. We don’t have to match data fields which vendors don’t want to do, establish a national patient identification system which is politically unacceptable, change laws in 50 states to facilitate consents and the transmission of PHI across state lines, or protect against massive record breaches. It will take forever to tackle these self-created problems — and we may never be able to resolve them satisfactorily!

Instead, we can aggregate a patient’s complete record from all his providers on a device the patient owns and controls along with the application to manage it, and gives to any provider he sees, anytime, anywhere — even without Internet or server access. And when his provider logs on, important information can be waiting for her to save her time and quickly get her up to speed about her patient’s issues. And then, as she examines her patient, she can search the patient’s device and with two or three clicks open records or access information that relates specifically to the patient’s problem(s).

To do it right, we also can adopt a unique business model that complements this new approach and aligns everyone’s interests — so patients get peace of mind and better lower-cost care, providers can increase their income and provide better care, and employers, insurers and government enjoy serious reductions in health insurance costs.

Such a solution is available today, and it works. It’s called MedKaz®. (Full disclosure: our company, Health Record Corporation, has created it.) All we have to do is get government out of the way so care providers have time to try it. Everyone concerned with the healthcare equation will benefit, and it will be another example that free enterprise and innovation are alive and well!

Rather, it’s that we persist down a path that

Guest
Peter1
Oct 10, 2014

“All we have to do is get government out of the way so care providers have time to try it.”

Huh?

Guest
Allan
Oct 10, 2014

Adrian, thank you for your response. You seem to be promoting the right way of thinking.

Extraneous information: I have no expertise in this area so I probably don’t have the right terminology and probably make it difficult for you to understand what I am saying. A lot of information is collected on us that has no bearing on a medical record but might have had bearing on the interaction occurring at the time. That information needs to be removed from the medical record along with its traces.

It appears that you are suggesting not having everyone’s information accessible from one place. My assumption is that you are trying to prevent an entry from grabbing everything at one time. To do that it appears you wish to create many data centers that have to be accessed individually where optimally it would be specific for each patient and thus the patient could be knowledgeable as to requests for his information and perhaps even control it. That information could be further divided so that no organization was able to get the entire lot of information without permission and need to know.

Guest
Allan
Oct 10, 2014

“Privacy, in the form of Fair Information Practice Principles, must become a national priority and provide all of us with access to our health data before it goes to other institutions, health information exchanges, and data brokers so that we can control secondary use.”

Since we live in a global world where many able criminals can obtain one’s data I find this something near impossible to attain if the package they are seeking is all in one bundle requiring only one key.

Maybe you are trying to provide an answer here below, but I cannot be sure. Nor do I see the method you are attempting to suggest though I like some of the things you say.

“Most important of all, patient health records must be linked to and controlled by the patient rather than some institution.”

Are you suggesting ‘patient control’ over their own records and interactions that can be accessed individually only with patient consent where extraneous information is automatically deleted?

Guest
Oct 10, 2014

@Allan – I appreciate your questions. The key points of control are not about having the data all in one bundle. Much of our data is probably safest left with the institution that created it on our behalf because they will keep a copy anyway. Personal data resulting from a physician-patient relationship might be kept in any of thousands of places just like we do today with documents or bitcoin. Some of these will be institutions, some will be cloud-hosted, and some will be literally in our home or smartphone. For example, current iPhone security is strong enough to be of concern to the FBI http://www.npr.org/blogs/alltechconsidered/2014/10/08/354598527/apple-says-ios-encryption-protects-privacy-fbi-raises-crime-fears

The key Fair Information Practice point is to avoid collecting data in hidden, inaccessible exchanges and data brokers that won’t give you control and won’t notify you when your name is matched and the data is accessed.

I don’t know what you mean by “extraneous information is automatically deleted” so I’m probably not suggesting anything of the sort.

Guest
Oct 10, 2014

Security is important but no amount of security will convince people to allow hidden surveillance of their personal habits, location, and contacts. These are things we share with a physician if we trust the physician, her advice, and respect for the public health of the community.

Guest
Gregory Dennis
Oct 10, 2014

interoperability remains a huge challenge, it’s true. It’s great to talk about giving patients more control. But I’m wondering if others are seeing what I’m seeing – a new development where patients are extremely reluctant to give their healthcare data over to electronic/digital systems, for fear the data will be hacked and revealed. Given the J.P. Morgan and other recent incidents, they are justifiably concerned. Seems we need to deal with security as Job One.

Guest
Oct 10, 2014

“Most important of all, patient health records must be linked to and controlled by the patient rather than some institution. Instead of treating physicians as agents of the institution, health record access must respect the privacy of the physician-patient relationship.”

My concern is that EHRs as currently configured violate this every day….ancillary hospital staff for a minor hospital procedure having access to far too much info discussed by the patient and primary care doc (am I wrong?)….for House of Cards fans, Claire Underwood’s medical hx secret will not stay secret long.