Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says:

“I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????”

Indeed, why? Whose data is it, anyway?

This spring I’ve been learning (slowly) about HIPAA - the immense and complex 1996 Health Information Portability and Accountability act - it’s become increasingly obvious that the law’s intent has just plain gone sour.
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Goodhart’s law - named after a former chief economist of the Bank of England - says that whatever social or economic indicator or other surrogate measure you adopt as a financial target ceases to be a relevant target once you have adopted it because it loses the information content it had originally.

What is the risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?

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Guest Post: Cindy Throop from http://Open-Health.us, a participatory forum dedicated to effectively including patients in the discussion, planning, and evaluation of health care reform.

A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, you will have quick and easy (and free) access to your health data?

Ummm, not necessarily.

It may seem like a no-brainer, but we need to make sure President Obama knows that we – as patients, future patients, caregivers, citizens, and taxpayers – really care about having access to our health information. On Wednesday, July 1, 2009, Obama will be holding an online town hall meeting on health care reform to answer some common questions. People can submit questions via Facebook, YouTube, and Twitter (twitter hashtag: #WHHCQ)

President Obama will answer common questions. If enough of us ask, maybe we will get a verbal commitment from Obama to support our health data rights.

Here are a couple of twitter examples:

Obama, will #hcreform support my right to access and use #myhealthdata ? #WHHCQ

Hi Prez Obama! Will #hcreform support humans’ access to their own health data, kinda like how they access their pet’s data? #WHHCQ

“To alienate [patients] from their own decision making is to change them into objects.” – P. Freire, Pedagogy of the Oppressed

The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its assertions are self-evident, basic, essential. The right to have information about oneself? – why the fuss? – this is America after all! Yet the practical and psychological impediments are so immense, and the impact on an individual’s failing health and the country’s economic troubles so potentially redemptive, we get why it’s so important to start spreading the news/ make a brand new start of it.

Much has been explained in the declaration’s FAQs, in the 30+ blog posts (see Gilles’ below, and e-Patient Dave’s here), and very succinctly in hundreds of tweets.

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Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects brought on by popular drugs can go unrecognized for years.

A recent review in the Annals of Internal Medicine (June 16, 2009) reveals that statin-related muscle problems are far more common than most RCTs report. The connection between acid-suppressing drugs and fractures also went undetected until many years after the drugs were taken by millions. And it took the FDA years to recognize that severe bone, joint and muscle pain was linked to drugs for osteoporosis (Actonel, Boniva, Fosamax, Reclast). Read more…

Aliya Sternstein writes for NextGov, a site devoted to “technology and the business of government.” We spoke last week for her piece about the White House’s use of social media. There are some people who, when you speak with them, the conversation goes to new places. This was one of those times.

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Dedication: This post is dedicated to Regina Holliday and to the memory of her husband, Frederick Allen Holliday, who passed away on June 17. Regina’s story has energized many of us to create the Declaration of Health Data Rights we are asking you to endorse on a website or via twitter.

Definition: Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable. Similarly, people upload video from their cell phone to YouTube because these individual video streams are computable.

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This is not going to be easy to absorb, if you really let it sink in.

My wife’s a veterinarian, and we sometimes compare notes. So this headline caught my attention. Excerpt from the article:

Economic Euthanasia On the Rise

Euthanasia can be the last act of love when disease or time has made death a greater comfort than life … But now euthanasia has taken on a new and unsettling meaning for some vets’ clients. Economic euthanasias are occurring at higher frequences in practices where the community has been hit hard by the down economy.

An increase in euthanasia when treatment is medically feasible leaves veterinarians to question how they can remain financially stable while helping clients and patients get what they need.

… [An Ohio emergency clinic says] “The worst part is more clients are taking their pets home to die when they’re in need of treatment.”

Now consider what the insightful, visionary Gilles Frydman wrote here a month ago today: Will the Great Recession Create Millions of e-Patients?

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Next anecdote about poorly managed medical data:

Amen!

Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was linked to my ss# and my medical record. Discovered accidentally when the lead attendant called me by the wrong name…. The hospital ethics person states only that they have taken care of it and counseled the individual involved!

Then try reviewing your own EMR. They act like you are neurotic even though the reason is that your record had been mixed up with another person…duh!

Lots of errors/lots of privacy issues.

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Tom Davenport, in a Harvard Business Publishing Blog post, does a nice job of discussing the merging of “Health 2.0″, the aggregate of online communities, wiki’s, bloggers, and tweets, with the role of traditional medical providers.  He asks whether, if you get seriously ill, you will rely solely on colleagues online or whether you’ll seek out a traditional medical provider at a reputable facility and, correctly, concludes the latter.  He also accurately points out that internet savvy consumers will, after the onset of their symptoms or illness, rely on “health 2.0″ people and tools to obtain information, check out options, get reactions and opinions on proposed therapies and, I believe, armed with this information, will come out with a better outcome.

In my view, it would be a bad mistake for the advocates of health 2.0 approaches to consider it an “either/or” proposition.  Rather, with the help of alliances with traditional medical providers, we can forge a brave, better new world of empowered, informed, e-patients.

Thanks, Tom Davenport, for singing our song.  In my view this is Participatory Medicine at its best: an equal partnership with patients and providers, with patients accepting responsibility for their health, but also relying on medical providers to provide quality health care services, each helping the other in ways for which they are uniquely qualified.  This is the health care system that I envision for the future!