Can we at least try not to kill 440,000 patients per year?

Check out the latest from Doc Searls, courtesy of Doc Searls Weblog.

Obamacare matters. But the debate about it also misdirects attention away from massive collateral damage to patients. How massive? Dig To Make Hospitals Less Deadly, a Dose of Data, by Tina Rosenberg in The New York Times. She writes,

Until very recently, health care experts believed that preventable hospital error caused some 98,000 deaths a year in the United States — a figure based on 1984 data. But a new report from the Journal of Patient Safety using updated data holds such error responsible for many more deaths — probably around some 440,000 per year. That’s one-sixth of all deaths nationally, making preventable hospital error the third leading cause of death in the United States. And 10 to 20 times that many people suffer nonlethal but serious harm as a result of hospital mistakes.

The bold-facing is mine. In 2003, one of those statistics was my mother. I too came close in 2008, though the mistake in that case wasn’t a hospital’s, but rather a consequence of incompatibility between different silo’d systems for viewing MRIs, and an ill-informed rush into a diagnostic procedure that proved unnecessary and caused pancreatitis (which happens in 5% of those performed — I happened to be that one in twenty). That event, my doctors told me, increased my long-term risk of pancreatic cancer.

Risk is the game we’re playing here: the weighing of costs and benefits, based on available information. Thus health care is primarily the risk-weighing business we call insurance. For generations, the primary customers of health care — the ones who pay for the services — have been insurance companies. Their business is selling bets on outcomes to us, to our employers, or both. They play that game, to a large extent, by knowing more than we do. Asymmetrical knowledge R them.

Now think about the data involved. Insurance companies live in a world of data. That world is getting bigger and bigger. And yet, McKinsey tells us, it’s not big enough. In The big-data revolution in US health care: Accelerating value and innovation (subtitle: Big data could transform the health-care sector, but the industry must undergo fundamental changes before stakeholders can capture its full value), McKinsey writes,

Fiscal concerns, perhaps more than any other factor, are driving the demand for big-data applications. After more than 20 years of steady increases, health-care expenses now represent 17.6 percent of GDP—nearly $600 billion more than the expected benchmark for a nation of the United States’s size and wealth.1 To discourage overutilization, many payors have shifted from fee-for-service compensation, which rewards physicians for treatment volume, to risk-sharing arrangements that prioritize outcomes. Under the new schemes, when treatments deliver the desired results, provider compensation may be less than before. Payors are also entering similar agreements with pharmaceutical companies and basing reimbursement on a drug’s ability to improve patient health. In this new environment, health-care stakeholders have greater incentives to compile and exchange information.

While health-care costs may be paramount in big data’s rise, clinical trends also play a role. Physicians have traditionally used their judgment when making treatment decisions, but in the last few years there has been a move toward evidence-based medicine, which involves systematically reviewing clinical data and making treatment decisions based on the best available information. Aggregating individual data sets into big-data algorithms often provides the most robust evidence, since nuances in subpopulations (such as the presence of patients with gluten allergies) may be so rare that they are not readily apparent in small samples.

Although the health-care industry has lagged behind sectors like retail and banking in the use of big data—partly because of concerns about patient confidentiality—it could soon catch up. First movers in the data sphere are already achieving positive results, which is prompting other stakeholders to take action, lest they be left behind. These developments are encouraging, but they also raise an important question: is the health-care industry prepared to capture big data’s full potential, or are there roadblocks that will hamper its use

The word “patient” appears nowhere in that long passage. The word “stakeholder” appears twice, plus eight more times in the whole piece. Still, McKinsey brooks some respect for the patient, though more as a metric zone than as a holder of a stake in outcomes:

Health-care stakeholders are well versed in capturing value and have developed many levers to assist with this goal. But traditional tools do not always take complete advantage of the insights that big data can provide. Unit-price discounts, for instance, are based primarily on contracting and negotiating leverage. And like most other well-established health-care value levers, they focus solely on reducing costs rather than improving patient outcomes. Although these tools will continue to play an important role, stakeholders will only benefit from big data if they take a more holistic, patient-centered approach to value, one that focuses equally on health-care spending and treatment outcomes.

McKinsey’s customers are not you and me. They are business executives, many of which work in health care. As players in their game, we have zero influence. As voters in the democracy game, however, we have a bit more. That’s one reason we elected Barack Obama.

So, viewed from the level at which it plays out, the debate over health care, at least in the U.S., is between those who believe in addressing problems with business (especially the big kind) and those who believe in addressing problems with policy (especially the big kind, such as Obamacare).

Big business has been winning, mostly. This is why Obamacare turned out to be a set of policy tweaks on a business that was already highly regulated, mostly by captive lawmakers and regulators.

Meanwhile we have this irony to contemplate: while dying of bad data at a rate rivaling war and plague, our physical bodies are being doubled into digital ones. It is now possible to know one’s entire genome, including clear markers of risks such as cancer and dementia. That’s in addition to being able to know one’s quantified self (QS), plus one’s health care history.

Yet all of that data is scattered and silo’d. This is why it is hard to integrate all our available QS data, and nearly impossible to integrate all our health care history. After I left the Harvard University Health Services (HUHS) system in 2010, my doctor at the time (Richard Donohue, MD, whom I recommend highly) obtained and handed over to me the entirety of my records from HUHS. It’s not data, however. It’s a pile of paper, as thick as the Manhattan phone book. Its utility to other doctors verges on nil. Such is the nature of the bizarre information asymmetry (and burial) in the current system.

On top of that, our health care system incentivizes us to conceal our history, especially if any of that history puts us in a higher risk category, sure to pay more in health insurance premiums.

But what happens when we solve these problems, and our digital selves become fully knowable — by both our selves and our health care providers? What happens to the risk calculation business we have today, which rationalizes more than 400,000 snuffed souls per annum as collateral damage? Do we go to single-payer then, for the simple reason that the best risk calculations are based on the nation’s entire population?

I don’t know.

I do know the current system doesn’t want to go there, on either the business or the policy side. But it will. Inevitably.

At the end of whatever day this is, our physical selves will know our data selves better than any system built to hoard and manage our personal data for their interests more than for ours. When that happens the current system will break, and another one will take its place.

How many more of us will die needlessly in the meantime? And does knowing (or guessing at) that number make any difference? It hasn’t so far.

But that shouldn’t stop us. Hats off to leadership in the direction of actually solving these problems, starting with Adrian Gropper, ePatient Dave, Patient Privacy RightsBrian Behlendorf, Esther Dyson, John Wilbanks, Tom Munnecke and countless other good people and organizations who have been pushing this rock up a hill for a long time, and aren’t about to stop. (Send Doc more names or add comments directly to this blog here.)

Courtesy of Doc Searls Weblog

Prescription drug database bill stalls in Pa. House

To view the full article, please visit: Prescription drug database bill stalls in Pa. House

“A bill that would create a prescription drug database intended to help law enforcement nab doctor-shoppers and pill mills hit a hurdle Wednesday in the state House.”

Five Public Interest Groups Underscore Opposition To Settlement In Google Privacy Suit

“Consumer Watchdog joined the Electronic Privacy Information Center (EPIC) and three other public interest groups today in re-iterating their opposition to a proposed $8.5 million settlement in a class action suit against Google for privacy violations in the way it handled users’ search data because proposed recipients of settlement funds don’t represent the interests of the class.”

Read more: http://www.digitaljournal.com/pr/1529279#ixzz2i1kPTbJt

Security and Privacy of Patient Data Subject of Regulatory Hearing

Representatives of patients, providers, insurers and tech companies testify before federal panel yesterday at the HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures.

“We believe it’s the patient’s right to have digital access that is real-time and online for accounting of disclosures,” said Dr. Deborah Peel, the head of Patient Privacy Rights, a group she founded in 2004. Patients “need and want the data for our own health. We need to have independent agents as advisors, independent decision-making tools, we need independence from the institutions and data holders that currently control our information. We need to have agents that represent us, not the interests of corporations,” she said.

“I think the day will come when people will understand that their health information is the most valuable personal information about them in the digital world and that it’s an asset that should be protected in the same way that they protect and control their financial information online,” Peel said.

To view the full article click Security and Privacy of Patient Data Subject of Regulatory Hearing

To view a PDF of the hearing click HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures

 

Medical Info for Sale Online

In this article the News4 I-Team discovered how anyone with internet access and who is willing to pay just a few hundred dollars can easily have access to and purchase private medical records online.  This contributes to between “one and two million Americans being affected by medical identity theft each year”.

Read more in this article here and learn where stolen medical information goes, who is selling the information, and where they are getting it from in the first place.  Are YOU at risk?

 

Pairing patient privacy with health big data analytics

“Health privacy and security are often mentioned in tandem, but Deborah Peel, Founder and Chair of Patient Privacy Rights and Adrian Gropper, Chief Technology Officer of Patient Privacy Rights, took a different view in a recent Institute for Health Technology Transformation (iHT2) webcast.”

“The presentation, titled “Competing for Patient Trust and Data Privacy in the Age of Big Data” detailed a few of the nuances between patient data privacy and security and why privacy is so significant as healthcare organizations pull together huge data sets for health information exchange (HIE) and accountable care.”

To view the full article, please visit: Pairing patient privacy with health big data analytics

The webcast can be viewed at: Competing for Patient Trust and Data Privacy in the Age of Big Data Webinar

How Medical Identity Theft Can Give You a Decade of Headaches

See the full article at How Medical Identity Theft Can Give You a Decade of Headaches.

This article tells us a cautionary tale about how Arnold Salinas had his identity stolen by someone who took out medical care in his name. Now, any time he gets medical treatment, he has to be extremely careful that his records are actually his own or face the possibility that he will get the WRONG treatment.

“Medical identity theft affected an estimated 1.5 million people in the U.S. at a cost of $41.3 billion last year, according to the Ponemon Institute, a research center focused on privacy and data security. The crime has grown as health care costs have swelled and job cuts have left people without employer-subsidized insurance. Making matters worse: The complexity of the medical system has made it difficult for victims to clear their name.”

It is so important that patients control and are kept abreast of their medical records, but the current system does not make this easy. According to the article, medical identity theft cases are some of the most difficult to solve and can take years. What makes it so difficult is that “‘…you have to go provider by provider, hospital by hospital, office by office and correct each record,” said Sam Imandoust, a legal analyst with the Identity Theft Resource Center. ‘The frustrating part is while you’re going through and trying to clean up the records, the identity thief can continue to go around and get medical services in the victim’s name. Really there’s no way to effectively shut it down.’” Another problem is even finding out your identity has been stolen. According to Pam Dixon, founder of World Privacy Forum, “the fractured nature of the health care system makes medical identity theft hard to detect. Victims often don’t find out until two years after the crime, and cases can commonly stretch out a decade or longer”. Banks and other institutions are used to dealing with identity theft, but the medical industry isn’t equipped to handle this kind of infringement.

Benefits of Online Medical Records Outweigh the Risks- Includes Opposing Quotes from Dr. Deborah Peel

An article written by Larry Magid in the Huffington Post quotes PPR when speaking about the issues surrounding electronic health records. You can view the full article here: Benefits of Online Medical Records Outweigh the Risks.

“There are also privacy concerns. In a 2010 Wall Street Journal op-ed, psychiatrist Deborah Peel, founder of Patient Privacy Rights, complained that ‘lab test results are disclosed to insurance companies before we even know the results.’ She added that data is being released to ‘insurers, drug companies, employers and others willing to pay for the information to use in making decisions about you, your job or your treatments, or for research.’ Her group is calling for tighter controls and recognition that “that patients own their health data.'”

Two University of Miami Hospital Employees May Have Stolen & Sold Patient Data

To view the full Miami Herald article, please visit: Two University of Miami Hospital Employees May Have Stolen & Sold Patient Data

Two hospital employees are accused of stealing thousands of “face-sheets” from the University of Miami Hospital over a 22-month period. These “face-sheets” included information such as name, address, reason for visiting, insurance policy number (note: Medicare and Medicaid use SSNs as insurance policy numbers), date of birth and the last four digits of the social security number. The employees have admitted to their improper conduct and were terminated immediately, but the lasting damage of the stolen information is still being addressed by the hospital and there is no information about how many of these sheets may have been taken. In a statement released released by the hospital, it was revealed that there is “no indication that medical records are at risk”.

Consumers Say No to Mobile Apps That Grab Too Much Data

To view the full article, please visit the New York TimesConsumers Say No to Mobile Apps That Grab Too Much Data

Imagine the reactions smart phone users will have when they discover the vast, hidden industry that collects, uses, and sells personal health data—-from prescription records to DNA to diagnoses.

A recent Pew Research Center study found smartphone users are taking action to protect their privacy:

·50% “decided not to install applications on their mobile phones because they demanded too much personal information”

·Nearly a third uninstalled an application after learning that it was collecting personal information “they didn’t wish to share.”

·And one in five turned off location tracking “because they were concerned that other individuals or companies could access that information.”

What will happen when smartphone users want to protect the privacy of their health information and try to turn off:

·the hundreds or thousands of hidden disclosures and uses of their sensitive health records by hospitals’ and doctors’ health IT systems

·the daily sale of their prescription records by pharmacies and lab test results by clinical laboratories

·the disclosure of personal health information via state “health information exchanges” and the Nationwide Health Information Network

If Americans can figure out and ACT to prevent cell phone apps from grabbing their contacts and location information—what will they do when they find out that electronic health systems collect use, and sell mountains of detailed, intimate information about their minds and bodies—and they can’t turn these “apps” off?

People CAN choose to live without Angry Birds (or whatever app they decide against) but they really CAN’T choose to go without healthcare – at least not without possibly serious health repercussions.  People can choose what personal info to share online (to some degree), but really can’t choose what health info is shared.

Health technology systems that eliminate patient control over who can see and use sensitive health data are causing the nation’s greatest hidden privacy disaster. It can only be fixed when the public finds out.