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Tag: Privacy

A National Patient Identifier: Should You Care?

By ADRIAN GROPPER, MD

The rather esoteric issue of a national patient identifier has come to light as a difference between two major heath care bills making their way through the House and the Senate.

The bills are linked to outrage over surprise medical bills but they have major implications over how the underlying health care costs will be controlled through competitive insurance and regulatory price-setting schemes. This Brookings comment to the Senate HELP Committee bill summarizes some of the issues.

Who Cares?

Those in favor of a national patient identifier are mostly hospitals and data brokers, along with their suppliers. More support is discussed here. The opposition is mostly on the basis of privacyand libertarian perspective. A more general opposition discussion of the Senate bill is here.

Although obscure, national patient identifier standards can help clarify the role of government in the debate over how to reduce the unusual health care costs and disparities in the U.S. system. What follows is a brief analysis of the complexities of patient identifiers and their role relative to health records and health policy.

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Our Cancer Support Group On Facebook Is Trapped

Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups

By ANDREA DOWNING

Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.

As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.

This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.

Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.

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For Your Radar — Huge Implications for Healthcare in Pending Privacy Legislation

By VINCE KURAITIS and DEVEN McGRAW

Two years ago we wouldn’t have believed it — the U.S. Congress is considering broad privacy and data protection legislation in 2019. There is some bipartisan support and a strong possibility that legislation will be passed. Two recent articles in The Washington Post and AP News will help you get up to speed.

Federal privacy legislation would have a huge impact on all healthcare stakeholders, including patients.  Here’s an overview of the ground we’ll cover in this post:

  • Why Now?
  • Six Key Issues for Healthcare
  • What’s Next?

We are aware of at least 5 proposed Congressional bills and 16 Privacy Frameworks/Principles. These are listed in the Appendix below; please feel free to update these lists in your comments.  In this post we’ll focus on providing background and describing issues. In a future post we will compare and contrast specific legislative proposals.

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The Privacy Dilemma

Joseph KvedarI recently had the opportunity to join Boston news media veteran, Dan Rea, on his AM radio program, Nightside with Dan Rea. It was a one-hour call in program, and an eye opening experience for me. Dan and I chatted about connected health and how it can truly disrupt care delivery and put the individual at the center of their own health. Then Dan opened the lines to the fine citizens of New England for questions, and the phones started ringing off the hook.

The overwhelming concern – actual fear — among callers was maintaining their privacy in an increasingly connected world, especially their personal health data. This is a topic I touched upon in my recent book, The Internet of Healthy Things, and one which I will explore further in my upcoming talk at our Connected Health Symposium in a few weeks. But I was so struck by the extent of concern, I thought I’d present a few theories I’ve been contemplating on the subject.Continue reading…

Give up Your Data to Cure Disease? Not so Fast!

flying cadeuciiThis weekend the NYTimes published an editorial titled Give Up Your Data to Cure Disease. When we will stop seeing mindless memes and tropes that cures and innovation require the destruction of the most important human and civil right in Democracies, the right to privacy? In practical terms privacy means the right of control over personal information, with rare exceptions like saving a life.

Why aren’t government and industry interested in win-win solutions?  Privacy and research for cures are not mutually exclusive.

How is it that government and the healthcare industry have zero comprehension that the right to determine uses of personal information is fundamental to the practice of Medicine, and an absolute requirement for trust between two people?

Why do the data broker and healthcare industries have so little interest in computer science and great technologies that enable research without compromising privacy?

Today healthcare “innovation” means using technology for spying, collecting, and selling intimate data about our minds and bodies.

This global business model exploits and harms the population of every nation.  Today no nation has a map that tracks the millions of hidden data bases where health information is collected and used, inaccessible and unaccountable to us.  How can we weigh risks when we don’t know where our data are held or how data are used? See www.theDataMap.org .

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Universal Patient Identifiers for the 21st Century

Healthcare is abuzz with calls for Universal Patient Identifiers. Universal people identifiers have been around for decades and experience can help us understand what, if anything, makes patients different from people. This post argues that surveillance may be a desirable side-effect of access to a health service but the use of unique patient identifiers for surveillance needs to be managed separately from the use of identifiers in a service relationship. Surveillance uses must always be clearly disclosed to the patient or their custodian each time they are sent by the service provider or “matched” by the surveillance agency. This includes health information exchanges or research data registries.

As a medical device entrepreneur, physician, engineer, and CTO of Patient Privacy Rights, I have decades of experience with patient identifier practices and standards. I feel particularly qualified to discuss patient identifiers because I serve on the Board and Management Council of the NIST-founded Identity Ecosystems Steering Group (IDESG) where I am the Privacy and Civil Liberties Delegate. I am also a core participant to industry standards groups Kantara-UMA and OpenID-HEART working on personal data and I consult on patient and citizen identity with public agencies.

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Anthem Was Right Not to Encrypt

Optimized-FredTrotterThe Internet is abuzz criticizing Anthem for not encrypting its patient records. Anthem has been hacked, for those not paying attention.

Anthem was right, and the Internet is wrong. Or at least, Anthem should be “presumed innocent” on the issue. More importantly, by creating buzz around this issue, reporters are missing the real story: that multinational hacking forces are targeting large healthcare institutions.

Most lay people, clinicians and apparently, reporters, simply do not understand when encryption is helpful. They presume that encrypted records are always more secure than unencrypted records, which is simplistic and untrue.

Encryption is a mechanism that ensures that data is useless without a key, much in the same way that your car is made useless without a car key. Given this analogy, what has apparently happened to Anthem is the security equivalent to a car-jacking.

When someone uses a gun to threaten a person into handing over both the car and the car keys needed to make that care useless, no one says “well that car manufacturer needs to invest in more secure keys”.

In general, systems that rely on keys to protect assets are useless once the bad guy gets ahold of the keys. Apparently, whoever hacked Anthem was able to crack the system open enough to gain “programmer access”. Without knowing precisely what that means, it is fair to assume that even in a given system implementing “encryption-at-rest”, the programmers have the keys. Typically it is the programmer that hands out the keys.

Most of the time, hackers seek to “go around” encryption. Suggesting that we use more encryption or suggesting that we should use it differently is only useful when “going around it” is not simple. In this case, that is what happened.

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Privacy and Security and the Internet of Things

Screen Shot 2015-02-03 at 8.28.53 AM

In the future, everything will be connected.

That future is almost here.

Over a year ago, the Federal Trade Commission held an Internet of Thingsworkshop and it has finally issued a report summarizing comments and recommendations that came out of that conclave.

As in the case of the HITECH Act’s attempt to increase public confidence in electronic health records by ramping up privacy and security protections for health data, the IoT report — and an accompanying publication with recommendations to industry regarding taking a risk-based approach to development, adhering to industry best practices (encryption, authentication, etc.) — seeks to increase the public’s confidence, but is doing it the FTC way: no actual rules, just guidance that can be used later by the FTC in enforcement cases. The FTC can take action against an entity that engages in unfair or deceptive business practices, but such practices are defined by case law (administrative and judicial), not regulations, thus creating the U.S. Supreme Court and pornography conundrum — I can’t define it, but I know it when I see it (see Justice Stewart’s timeless concurring opinion in Jacobellis v. Ohio).

To anyone actively involved in data privacy and security, the recommendations seem frighteningly basic:

build security into devices at the outset, rather than as an afterthought in the design process;

train employees about the importance of security, and ensure that security is managed at an appropriate level in the organization;

ensure that when outside service providers are hired, that those providers are capable of maintaining reasonable security, and provide reasonable oversight of the providers;

when a security risk is identified, consider a “defense-in-depth” strategy whereby multiple layers of security may be used to defend against a particular risk;

consider measures to keep unauthorized users from accessing a consumer’s device, data, or personal information stored on the network;

monitor connected devices throughout their expected life cycle, and where feasible, provide security patches to cover known risks.

consider data minimization – that is, limiting the collection of consumer data, and retaining that information only for a set period of time, and not indefinitely;

notify consumers and give them choices about how their information will be used, particularly when the data collection is beyond consumers’ reasonable expectations.

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An Open Letter to the People Who Brought Us HIPAA

flying cadeuciiOver the last five years, the United States has undergone more significant changes to its health care system perhaps since Medicare and Medicaid were introduced in the 1960s. The Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009 and the Patient Protection and Affordable Care Act of 2010 have paved the way for tremendous changes to our system’s information backbone and aim to provide more Americans access to health care.

But one often-overlooked segment of our health care system has been letting us down. Patients’ access to their own medical information remains limited. The HIPAA Privacy Rule grants individuals the right to copies of their own medical records, but it comes at a noteworthy cost—health care providers are allowed to charge patients a fee for each record request. As explained on the Department of Health and Human Services’ website, “the Privacy Rule permits the covered entity to impose reasonable, cost-based fees.”

HIPAA is a federal regulation, so the states have each imposed guidelines outlining their own interpretations of “reasonable.” Ideally, the price of a record request would remain relatively constant—after all, the cost of producing these records does not differ significantly from state to state. But in reality, the cost of requesting one’s medical record is not only unreasonably expensive; it is also inconsistent, costing dramatically different amounts based on local regulation.Continue reading…

Black Turtlenecks, Data Fiends and Code. An Interview with John Halamka

John Halamka-Google Glass

Of the nearly 100 people I interviewed for my upcoming book, John Halmaka was one of the most fascinating. Halamka is CIO of Beth Israel Deaconess Medical Center and a national leader in health IT policy. He also runs a family farm, on which he raises ducks, alpacas and llamas. His penchant for black mock turtlenecks, along with his brilliance and quirkiness, raise inevitable comparisons to Steve Jobs. I interviewed him in Boston on August 12, 2014.

Our conversation was very wide ranging, but I was particularly struck by what Halamka had to say about federal privacy regulations and HIPAA, and their impact on his job as CIO. Let’s start with that.

Halamka: Not long ago, one of our physicians went into an Apple store and bought a laptop. He returned to his office, plugged it in, and synched his e-mail. He then left for a meeting. When he came back, the laptop was gone. We looked at the video footage and saw that a known felon had entered the building, grabbed the laptop, and fled. We found him, and he was arrested.

Now, what is the likelihood that this drug fiend stole the device because he had identity theft in mind? That would be zero. But the case has now exceeded $500,000 in legal fees, forensic work, and investigations. We are close to signing a settlement agreement where we basically say, “It wasn’t our fault but here’s a set of actions Beth Israel will put in place so that no doctor is ever allowed again to bring a device into our environment and download patient data to it.”

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