Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Researchask the question: “Who’s Data is it Anyway?” Your electronic health records data is not the property of your vendor and there are things you can do about it, they contend.”

If you have a subscription to HealthData Management and would like the view the full article, please visit: Don’t Let EHR Vendors Own Your Data

The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents

Vast NSA troves of phone and email data and the huge focus on HealthCare.gov’s website provoked intense public concern about hidden uses and sales of personal data…..especially personal health data.

But there is great news from California:  tough new laws to protect data privacy were enacted in September.  See: “The Reports of the Death of Privacy Were Exaggerated: California Breathes New Life into the Privacy Rights of its Residents”, Tuesday, November 19, 2013, by Sharon R. Klein and Odia Kagan

States like CA and TX (HB 300) passed new laws because state residents are demanding stronger data privacy protections, and Congress and federal agencies have failed to act.

Key new data privacy protections in CA:

“Business(es) offering software or hardware to consumers… designed to maintain medical information or to assist in the diagnosis and treatment of individuals” must:

Press your state lawmakers to pass strong new data protection laws like California’s.  People want technology that protects privacy. They won’t trust companies and government that eliminate privacy and use personal data without consent.

Information Asymmetry – The Politics of Health IT Policy

Let’s recognize Healthcare.gov as the dawn of mass patient engagement – and applaud it. Before this website, patients were along for the ride. Employers choose most of the insurance benefits, hospital web portals are an afterthought, and getting anything done with an insurance company, for both doctors and patients, means a phone call and paper. Can you imagine going online to find out the actual cost and buy anything? All that changed with Healthcare.gov.

Information is valuable and not evenly distributed. The haves are immensely valuable corporations. The have nots are patients and doctors. Welcome to the world of health IT politics where the rich get richer ($20 Billion of “incentives” have caused massive health IT consolidation and a hidden health surveillance state) and the poor get frustrated (talk to an independent physician about their EHR or to a patient trying to access her own health records).

Information asymmetry drives $1 Trillion waste of our $2.7 Trillion health care cost. That waste is about $3,000 per year per citizen.

The politics of health IT policy are not left vs. right but institution vs. individual. Politicians and regulators alike are now scrambling to understand the role of health IT policy in that $3,000 annual waste per citizen.

The asymmetry that drives health IT policy is easy to understand when you consider that health IT is sold to corporations. As physicians and patients, we do not prescribe or buy information technology and we are paying the price through a total lack of price and quality transparency.

Incumbent “stakeholders” and multi-$Billion not-for-profit “delivery networks” stand to lose half their revenue if our cost structure aligned with the rest of the developed world. Information asymmetry drives our health IT policy as we implement the Affordable Care Act and the HITECH information technology mandates. From the earliest days, the strategy of costly health IT “certification” seems designed to drive small vendors and open source software out of the market. In the middle ages of post ACA health IT policy, circa 2012, our federal health architecture EHR procurement (the VA and Department of Defense, among others) began wild gyrations that have muted one of the few potential sources of rational, citizen-funded open source health information technology. We are now in the predictive analytics era, as our healthcare “providers” figure out how to manage the physician-patient relationship to their economic advantage. They call it Population Health Management.

Population Health Management doesn’t have to increase information asymmetry. Patient engagement and Fair Information Practice principles are not controversial. Combined with patient-directed automation via Blue Button Plus and NSTIC-style voluntary identities, we can have Big Data analytics to drive health reform policy and population health management. All it takes is democratizing access to our own information and reasserting the primacy of the physician-patient relationship. To get there, our federal and state policymakers will need to use the reduction of information asymmetry as a guiding principle.

The opportunities for policymakers to reduce information asymmetry and engage patients abound:

  • Confirm the patient’s right to access all information using Blue Button Plus so we can delegate that access to the physicians and analytics services we trust.

  • Confirm the patient’s right to specify a voluntary identity for patient matching when we participate in health information exchange.

  • Confirm the patient’s right to a real-time online Accounting of Disclosures so that we can know who is getting our information and see what they’re getting.

  • Confirm the physician’s right to communicate with anyone using Direct secure messages without interference from their employer or a state health information bureaucracy.

We already have these rights under existing law. What we don’t have is regulators and public procurement processes that put consumer protection ahead of politics. It’s time for them to step up. Start by fixing Healthcare.gov with privacy-preserving, voluntary sign-in credentials that we can use with Blue Button Plus to access our hospitals, insurers and state databases without risk of identity theft. There’s $3,000 in it for each of us.

Adrian Gropper, MD is Chief Technical Officer of Patient Privacy Rights and participates in Blue Button+, Direct secure messaging governance efforts and the evolution of patient-directed health information exchange.

Check out the Latest from Dr. Gropper, courtesy of The Healthcare Blog.

Healthcare.gov sends user information to third parties, violating its own privacy policy

You might be interested in this story “Healthcare.gov sends user information to third parties, violating its own privacy policy.” 

The site sends user information to third parties like Pingdom and DoubleClick that are hidden data collectors.  Here you can find a screenshot in which Ghostery is used to show 7 hidden trackers: Healthcare.gov trackers

 

Google’s $8.5M Privacy Pact Going To Inapt Orgs, Groups Say

“A coalition of privacy groups [including Patient Privacy Rights] stepped up its opposition to the proposed $8.5 million settlement of a California class action alleging Google Inc. illegally divulged search information, saying Wednesday that counsel has failed to show how the seven organizations chosen to receive cy pres funds are appropriate.”

To view the full article (only available by subscription), please visit Google’s $8.5M Privacy Pact Going To Inapt Orgs, Groups Say.

Your prescription history is their business

“A secretive, for-profit service called ScriptCheck keeps track of all your prescriptions, even those you pay for with cash. Life insurers pay for the data.”

To view the full article, please visit: http://www.latimes.com/business/la-fi-lazarus-20131022,0,1491023.column#ixzz2miu5cODJ

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

Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up

“Many technology experts are blaming the software behind Healthcare.gov for all the problems Americans have encountered while trying to sign up for health insurance in accordance with the Affordable Care Act.”

This interesting article explores what is wrong and what is right about healthcare.gov. To view the full article, please visit Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up.

People Are Changing Their Internet Habits Now That They Know The NSA Is Watching

NSA leaks causing public to mistrust the entire  internet, not just cell phone providers. Quotes:

  • consumer concern about online privacy actually jumped from 48% to 57% between June and July
  • The %  of consumers who adjusted their browser settings and opted out of mobile tracking — jumped 12% and 7% respectively between the first quarter report and July.
  • > 60% of Internet users also reported they do not feel they have control over their personal information online, and 48% said they didn’t know how that information was being used

The lack of personal control over data online will also affect cloud service providers:

  • Cloud-computing industry experts have already estimated that because of the NSA’s surveillance of cloud providers–along with the government’s civil-liberties-trolling methods to get them to comply–more companies will move overseas.
  • ITIF has estimated that this will result in a loss of up to $35 billion for U.S. cloud providers over the next three years, while Forrester analyst James Staten puts the figure at $180 billion.

How will the public react when they find that US health data holders—-such as physicians, hospitals, labs, pharmacies, health data exchanges, insurers, mobile apps, etc, etc— use and sell sensitive personal health data?

To view the full article, please visit:

http://www.fastcoexist.com/3015860/people-are-changing-their-internet-habits-now-that-they-know-the-nsa-is-watching