Anita Allen receives Lifetime Achievement Award from privacy advocacy group EPIC

May 29, 2014
Anita Allen, the Vice Provost for Faculty at Penn and the Law School’s Henry R. Silverman Professor of Law and Professor of Philosophy, will receive the Electronic Privacy Information Center’s (EPIC) Lifetime Achievement Award at a ceremony in Washington, D.C. June 2.
Allen, described by EPIC as “the nation’s leading privacy scholar,” has written and lectured widely on privacy law and ethics; her books on the subject include Unpopular Privacy:  What Must We Hide(Oxford, 2011); Privacy Law and Society (West 2011); and Why Privacy Isn’t Everything: Feminist Reflections on Personal Accountability (2003). Her book Uneasy Access: Privacy for Women in a Free Society (1988) was the first by an American philosopher devoted to how we define and value privacy. Allen is also the author The New Ethics: A Guide to the 21st Century Moral Landscape (2004).
EPIC is an independent non-profit research center based in Washington, D.C. focusing on privacy, freedom of expression, democratic values, and pursues a wide range of program activities including public education, litigation, and advocacy concerning the future of the Internet, according to the group’s website. The organization regularly files amicus briefs in federal courts, champions open government and consumer privacy, and lobbies Congress about privacy and civil liberties issues.  
Since 2010, Allen has served as a Commissioner on President Barack Obama’s Presidential Commission for the Study of Bioethical Issues. She holds a Ph.D. in Philosophy from the University of Michigan and a law degree from Harvard, and has published more than 100 scholarly articles and essays on topics that include health privacy, women privacy, children’s privacy, LGBT-related privacy rights, and electronic data protection. Allen has lectured on privacy throughout North America and Europe, and Taiwan, Japan and Israel. 
Allen has served on the boards of local and national non-profits including the Bazelon Center for Mental Health Law, the Maternity Care Coalition, the Hastings Center, the West Philadelphia Alliance for Children, and Planned Parenthood of Metropolitan Washington. A former board member of EPIC, she has played a leading role in the modern understanding of the right to privacy.

 

FTC Calls for Data Broker Transparency

By Marianne Kolbasuk McGee | healthcareinfosecurity.com
May 29, 2014

The Federal Trade Commission is urging Congress to enact privacy legislation that would provide consumers with more transparency about the activities of data brokers that collect sensitive health and financial data.

Reacting to the FTC recommendation, two consumer advocates say the explosion of data broker activities in recent years, coupled with regulatory gaps, point to the need for some legislative reforms to protect consumer privacy.

A May 27 FTC report that examined nine companies describes data brokers as “companies whose primary business is collecting personal information about consumers from a variety of sources and aggregating, analyzing and sharing that information, or information derived from it, for purposes such as marketing products, verifying an individual’s identity, or detecting fraud.”

The FTC says data brokers raise privacy concerns for consumers because “significantly, data brokers typically collect, maintain, manipulate and share a wide variety of information about consumers without interacting directly with them.”

The report notes: “In light of these findings, the commission unanimously renews its call for Congress to consider enacting legislation that would enable consumers to learn of the existence and activities of data brokers and provide consumers with reasonable access to information about them held by these entities.”

Deborah Peel, M.D., founder of advocacy group Patient Privacy Rights, says federal legislators and regulators need to crack down on data brokers, especially those that deal with sensitive information, such as health data.

“This is clearly a case where the government must pass laws that require personal control over personally identifiable information to restore our rights to privacy, because we can’t possibly do it ourselves,” Peel says. “Worse, the FTC seems not to have a handle on the size of the health data broker industry. … “Personal information is the ‘oil’ of the digital age – and our personal information belongs to each of us. … If the data brokers want our data, they should just ask. If we think the benefits are worth it, we will say ‘yes’.”

To view the full article, please visit FTC Calls for Data Broker Transparency

 

Tech Groups Press Again On ECPA Reform : Support Email Privacy

Patients need and want to use secure, encrypted email to communicate with health professionals. Why should the government be able to look at our email without a warrant?

The 1986 Electronic Communications Privacy Act (ECPA) must be updated to stop the government from reading our email without approval from a judge.

From the letter to President Obama signed by 81 groups, including Patient Privacy Rights, that asked him to champion fixing the ECPA:

  • “We write today to urge you to support reform of the Electronic Communications Privacy Act (ECPA) to guarantee that every American has full constitutional and statutory protections for the emails, photos, text messages, and other documents that they send and share online.”

“A warrant based on the probable cause standard is required for searches of U.S. mail, searches of a home, or even electronic communications that are not stored with companies like Google or Yahoo.” The same protections are just as important for email between doctors and patients!

Support for “email privacy” is bipartisan, see:  #ECPAReform http://bit.ly/1rAW7MY

Join us in telling the President to pursue #ECPAReform www.NotWithoutaWarrant.com http://bit.ly/1rAW7MY

URL for POLITICO article:  http://www.politico.com/morningtech/0414/morningtech13755.html

POLITICO Morning Tech:  FIRST LOOK: TECH GROUPS PRESS AGAIN ON ECPA REFORM — A gaggle of tech advocacy and industry groups are again imploring the White House to put their weight behind email privacy reform, and this time making clear that any loopholes for civil agencies would be a nonstarter. The groups, led chiefly by the Digital 4th and Digital Due Process coalitions, have been ramping up their ECPA reform push in the hopes of convincing Washington to tackle an issue that they see as low-hanging fruit. In a letter to President Obama today, they want the White House to know that they won’t support any warrant requirement carve-out for federal agencies like the Securities and Exchange Commission. “Seemingly, the only major impediment to passage is an objection by administrative agencies like the Securities and Exchange Commission, which would like to gut the legislation as a way to expand their investigative authorities,” write the groups, which include TechNet, Reddit, the Electronic Frontier Foundation and the ACLU. “Such an agency carve out would be a major blow to reform efforts, allowing increased government access to our communications during the many civil investigations conducted by federal and state agencies.” Full letter here: http://bit.ly/1kfKrfX

 

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Healthcare security stuck in Stone Age

April 22, 2014 Erin McCann | Healthcare IT News

Healthcare has a few things to do differently in the privacy and security arena — one of them being: Start taking it seriously. This according to Verizon’s annual breach report released today.

The new 2014 Verizon Data Breach Investigations Report highlights a concerning carelessness regarding privacy and security, specific to the healthcare industry.

“They seem to be somewhat behind the curve as far as implementing the kinds of controls we see other industries already implemented,” said Suzanne Widup, senior analyst on the Verizon RISK team, in an interview with Healthcare IT News discussing report findings.

The industry’s biggest misstep? Encryption, encryption, encryption.

To view the full story, please visit Healthcare security stuck in Stone Age

Privacy could ‘crash’ big data if not done right

April 15, 2014 | By Ashley Gold | FierceHealthIT

Privacy has the potential to crash big data before there’s a chance to get it right, and finding the right balance is key to future success, experts argued at a Princeton University event earlier this month.

The event, titled “Big Data and Health: Implications for New Jersey’s Health Care System” featured four panels exploring health, privacy, cost and transparency in regard to how big data can improve care and patient outcomes, according to an article on the university’s website.

“Privacy will crash big data if we don’t get it right,” Joel Reidenberg, visiting professor of computer science at Princeton and a professor at Fordham University’s School of Law, said at the event.

To view the full article, please visit Privacy could ‘crash’ big data if not done right

 

What You Need to Know About Patient Matching and Your Privacy and What You Can Do About It

Today, ONC released a report on patient matching practices and to the casual reader it will look like a byzantine subject. It’s not.

You should care about patient matching, and you will.

It impacts your ability to coordinate care, purchase life and disability insurance, and maybe even your job. Through ID theft, it also impacts your safety and security. Patient matching’s most significant impact, however, could be to your pocketbook as it’s being used to fix prices and reduce competition in a high deductible insurance system that makes families subject up to $12,700 of out-of-pocket expenses every year.

Patient matching is the healthcare cousin of NSA surveillance.

Health IT’s watershed is when people finally realize that hospital privacy and security practices are unfair and we begin to demand consent, data minimization and transparency for our most intimate information. The practices suggested by Patient Privacy Rights are relatively simple and obvious and will be discussed toward the end of this article.

Health IT tries to be different from other IT sectors. There are many reasons for this, few of them are good reasons. Health IT practices are dictated by HIPAA, where the rest of IT is either FTC or the Fair Credit Reporting Act. Healthcare is mostly paid by third-party insurance and so the risks of fraud are different than in traditional markets.

Healthcare is delivered by strictly licensed professionals regulated differently than the institutions that purchase the Health IT. These are the major reasons for healthcare IT exceptionalism but they are not a good excuse for bad privacy and security practices, so this is about to change.

Health IT privacy and security are in tatters, and nowhere is it more evident than the “patient matching” discussion. Although HIPAA has some significant security features, it also eliminated a patient’s right to consent and Fair Information Practice.

Patient matching by all sorts of health information aggregators and health information exchanges is involuntary and hidden from the patient as much as NSA surveillance is.

Patients don’t have any idea of how many databases are tracking our every healthcare action. We have no equivalent to the Fair Credit Reporting Act to cover these database operators. The databases are both public and private. The public ones are called Health Information Exchanges, All Payer Claims Databases, Prescription Drug Monitoring Programs, Mental Health Registries, Medicaid, and more.

The private ones are called “analytics” and sell $Billions of our aggregated data to hospitals eager to improve their margins, if not their mission.

The ONC report overlooks the obvious issue of FAIRNESS to the patient. The core of Fair Information Practice are Consent, Minimization and Transparency. The current report ignores all of these issues:

- Consent is not asked. By definition, patient matching is required for information sharing. Patient matching without patient consent leads to sharing of PHI without patient consent. The Consent form that is being used to authorize patient matching must list the actual parameters that will be used for the match. Today’s generic Notice of Privacy Practices are as inadequate as signing a blank check.

- Data is not minimized. Citizen matching outside of the health sector is usually based on a unique and well understood identifier such as a phone number, email, or SSN. To the extent that the report does not allow patients to specify their own matching criterion, a lot of extra private data is being shared for patient matching purposes. This violates data minimization.

- Transparency is absent. The patient is not notified when they are matched. This violates the most basic principles of error management and security. In banking or online services, it is routine to get a simple email or a call when a security-sensitive transaction is made.

This must be required of all patient matching in healthcare. In addition, patients are not given access to the matching database. This elementary degree of transparency for credit bureaus that match citizens is law under the Fair Credit Reporting Act and should be at least as strict in health care.

These elementary features of any EHR and any exchange are the watershed defining patient-centered health IT. If a sense of privacy and trust don’t push our service providers to treat patients as first-class users, then the global need for improved cybersecurity will have to drive the shift. Healthcare is critical infrastructure just as much as food and energy.

But what can you, as a patient. do to hasten your emancipation? I would start with this simple checklist:

Opt-out of sharing your health records unless the system offers:

  • Direct secure messaging with patients
  • Plain email or text notification of records matching
  • Patient-specified Direct email as match criterion
  • Your specific matching identifiers displayed on all consent forms
  • Online patient access to matchers and other aggregator databases

None of these five requirements are too hard. Google, Apple and your bank have done all of these things for years. The time has come for healthcare to follow suit.

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.

Guest Blog – The AOL Babies: Our Healthcare Crisis in a Nut

Check out the latest from Nic Terry, courtesy of HealthLawProf Blog.

Where does one start with AOL CEO Armstrong’s ridiculous and unfeeling justifications for changes in his company’s 401(k) plan. Cable TV and Twitter came out of the blocks fast with the obvious critiques. And the outrage only increased after novelist Deanna Fei took to Slate to identify her daughter as one of the subjects of Armstrong’s implied criticism. Armstrong has now apologized and reversed his earlier decision.

As the corporate spin doctors contain the damage, Armstrong’s statements likely will recede from memory, although I am still hoping The Onion will memorialize Armstrong’s entry into the healthcare debate (suggested headline, “CEO Discovers Nation’s Healthcare Crisis Caused by 25 Ounce Baby”). But supposing (just supposing) your health law students ask about the story in class this week. What sort of journey can you take them on?

First (but only if you are feeling particularly mean), you could start with HIPAA privacy. After all, intuitively it seemed strange to hear an employer publicly describing the serious health problems of employees’ family members. With luck your students will volunteer that the HIPAA Privacy Rule does not apply to employers (not “covered entities”). True, but AOL provided employees and their families with a health plan. Assume this was an employer-sponsored plan of some scale. It remains the case that the plan and not the employer is subject to the Privacy Rule, although following the Omnibus rule, the plan and its business associates are going to face increased regulation (such as breach notification, new privacy notices, etc). The employer’s responsibilities are to be found at 45 CFR 164.504 and primarily 164.504(f) (and here we descend deep into the HIPAA weeds). The employer must ensure that the plan sets out the plan members’ privacy rights viz-a-viz the employer. For plans like these the employer can be passed somewhat deindentied summary information (though for very limited purposes that don’t seem to include TV appearances). However, if the employer essentially administers the plan then things get more complicated. Firewalls are required between different groups of employees and employer-use of PHI is severely limited. By the way, and in fairness to Mr Armstrong, there are many things we don’t know about the AOL health plan, the source of his information about the “distressed babies,” whether any PHI had been deidentified, etc. Yet, at the very least AOL may have opened themselves up to the OCR asking similar questions and starting an investigation into how AOL treats enrollee information.

Second, this storm about the babies’ health insurance should provide a good basis for discussion of the various types of health insurance and their differential treatment by the Affordable Care Act. A large company likely will offer either a fully-insured or self-insured plan to its employees. If the latter, would your students have recommended reinsurance against claim “spikes” with a stop-loss policy? ACA should have relatively little impact on such plans or their cost except where the plans fall beneath the essential benefits floor. Contrast such plans with those traditionally offered on the individual market that are now being replaced with the lower cost (subject again to extra costs associated with essential benefits) health exchange-offered plans.

Third, this entire episode raises the question of health care costs and, specifically, the pricing of health care. On first hearing a million dollar price tag seems extraordinary. Yet as Ms. Fei noted in her Slate article, her daughter spent three months in a neonatal ICU and endured innumerable procedures and tests resulting in “a 3-inch thick folder of hospital bills that range from a few dollars and cents to the high six figures.” Now, the ACA may be criticized for not doing enough to cut costs (how about a quick pop quiz on what it does try to do?), but is there any truth to the argument that it raises health care costs? Recent investigative work by Steve Brill and fine scholarship by Erin Fuse Brown have highlighted both high prices and high differential pricing in health care. So why would a corporate executive (either directly or indirectly) blame high prices on the ACA? Are, for example, technology markets so different that the reasons for health care costs are under appreciated? And by extension, instead of fighting the ACA why are corporate CEOs not urging a second round of legislation aimed specifically at reducing the cost of healthcare for all? After all it is highly unlikley FFS pricing would be tolerated in their non-health domains. Or does such a group prefer the status quo and what Beatrix Hoffman critically terms as rationing by price?

Privacy Tools: Opting Out from Data Brokers

By Julia Angwin
ProPublica, Jan. 30, 2014

Data brokers have been around forever, selling mailing lists to companies that send junk mail. But in today’s data-saturated economy, data brokers know more information than ever about us, with sometimes disturbing results.

Earlier this month, OfficeMax sent a letter to a grieving father addressed to “daughter killed in car crash.” And in December, privacy expert Pam Dixon testified in Congress that she had found data brokers selling lists with titles such as “Rape Sufferers” and “Erectile Dysfunction sufferers.” And retailers are increasingly using this type of data to make from decisions about what credit card to offer people or how much to charge individuals for a stapler.

During my book research, I sought to obtain the data that brokers held about me. At first, I was excited to be reminded of the address of my dorm room and my old phone numbers. But thrill quickly wore off as the reports rolled in. I was equally irked by the reports that were wrong — data brokers who thought I was a single mother with no education — as I was by the ones that were correct — is it necessary for someone to track that I recently bought underwear online? So I decided to opt out from the commercial data brokers.

View the full article here, Privacy Tools: Opting Out from Data Brokers and get a list of the names of companies that track your information, links to their privacy pages, and instructions on how to opt out.

 

 

Texas Election 2014: Abbott Pledges to Safeguard DNA

“Texas gubernatorial frontrunner Greg Abbott recently released an extensive list of items he says he’ll push for once elected.. Ths list includes gun rights, campaign ethics, and blocking implementation of the Affordable Care Act, but the number one item is safeguarding your DNA according to KUT News.”

To view the full article, please visit: Texas Election 2014: Abbott Pledges to Safeguard DNA