Data Mining to Recruit Sick People

Companies Use Information From Data Brokers, Pharmacies, Social Networks

Some health-care companies are pulling back the curtain on medical privacy without ever accessing personal medical records, by probing readily available information from data brokers, pharmacies and social networks that offer indirect clues to an individual’s health.

Companies specializing in patient recruitment for clinical trials use hundreds of data points—from age and race to shopping habits—to identify the sick and target them with telemarketing calls and direct-mail pitches to participate in research.

“I think patients would be shocked to find out how little privacy protection they have outside of traditional health care,” says Nicolas P. Terry, professor and co-director at the Center for Law and Health at Indiana University’s law school. He adds, “Big Data essentially can operate in a HIPAA-free zone.”

FTC Commissioner Julie Brill says she is worried that the use of nonprotected consumer data can be used to deny employment or inadvertently reveal illnesses that people want kept secret. “As Big Data algorithms become more accurate and powerful, consumers need to know a lot more about the ways in which their data is used,” Ms. Brill says.

To view the full article, please visit: Data Mining to Recruit Sick People (article published December 17, 2013)

 

 

Consumer Watchdog and Other Privacy Groups Urge FTC to Block Pending Facebook Privacy Changes

“A coalition of six consumer privacy groups is calling on the Federal Trade Commission to enforce an earlier consent order with Facebook and block proposed changes in the social network’s Statement of Rights and Responsibilities and its Data Use Policy because the proposed changes violate the 2011 settlement with the Commission.”

“The changes will allow Facebook to routinely use the images and names of Facebook users for commercial advertising without consent,” the groups said. “The changes violate Facebook’s current policies and the 2011 Facebook settlement with the FTC. The Commission must act to enforce its order.”

Signing the letter were Consumer Watchdog, the Electronic Privacy Information (EPIC), the Center for Digital Democracy, Patient Privacy Rights, U.S. PIRG, and Privacy Rights Clearing House. Read a copy of the letter here: http://www.consumerwatchdog.org/resources/ltrfacebookftc090413.pdf

“Facebook has long played fast and loose with users’ data and relied on complex privacy settings to confuse its users, but these proposed changes go well beyond that,” said John M. Simpson, Consumer Watchdog’s Privacy director. “Facebook’s overreach violates the FTC Consent Order that was put in place after the last major privacy violation; if the Commission is to retain any of its credibility, it must act immediately to enforce that order.”

To view the full article, please visit: http://www.marketwatch.com/story/consumer-watchdog-and-other-privacy-groups-urge-ftc-to-block-pending-facebook-privacy-changes-2013-09-05

Re: Federal Agencies Paint Regulatory Landscape with Broad Brushstrokes

The Genomics Law Report (GLR) posted an interesting blog about the emergence of mobile health (mHealth) and the role many believe it could play in improving the quality and delivery of health care. It discusses how the mHealth regulatory landscape is still in its early stages of formation and has many key players and components that will help guide its development. It then outlines many of the players, such as the FDA, FCC, FTC, and HHS, and the various ways in which each organization might help shape the future of mHealth.

The story also makes mention of the FTC’s “privacy by design” recommendation for mobile applications, which is undoubtedly a critical component to protecting patients’ privacy as more innovative technologies and apps hit the marketplace. However, aside from ensuring that strong privacy controls are built into the apps up front, it will also be important to make sure patients have other important privacy protections, like control over their sensitive health information, no matter the medium used to collect and share it.

To read the full blog from GLR, click here.

Physician’s computers were stolen

See the full story from MySanAntonio.com: “Physician’s computers were stolen

“Five computers containing medical and personal information of more than 3,000 patients were stolen from a Stone Oak physician’s office in October.

Dr. Sudhir Gogu of the Stone Oak Urgent Care & Family Practice said the computers were stolen after an office door had been pried open sometime during the weekend of Oct. 22-23, according to the police report.

A San Antonio Police Department spokesman said in an email Wednesday that the computers have not been recovered and there have been no arrests…

…Dr. Deborah Peel, founder and chairman of Patient Privacy Rights, an organization focused on putting people in control of their electronic health information, called medical identity theft a dangerous crime.

“It typically costs the average victim at least $20,000, and health plans typically increase your premiums … or may even cancel your coverage,” Peel said.

Peel criticized the health industry for failing to taken data protection seriously.

“It’s estimated that 80 percent of hospitals don’t encrypt data,” she said. “Can you imagine if your banks didn’t encrypt and keep your financial information secure? We wouldn’t even let them be banks.””

PPR Comments on FTC Consumer Privacy Protection Report

We applaud the FTC for creating a report focused on protecting consumer privacy. The proposed framework
upholds many of the practices we believe in: informed consumer consent, privacy protection and data security,
and greater transparency.

View the FTC Staff Report: Protecting Consumer Privacy in an Era of Rapid Change

View PPR’s full comments

Exploring Privacy: An FTC Roundtable Discussion

The Federal Trade Commission will hosted a series of day-long public roundtable discussions to explore the privacy challenges posed by the vast array of 21st century technology and business practices that collect and use consumer data. Such practices include social networking, cloud computing, online behavioral advertising, mobile marketing, and the collection and use of information by retailers, data brokers, third-party applications, and other diverse businesses. The goal of the roundtables is to determine how best to protect consumer privacy while supporting beneficial uses of the information and technological innovation.

Dr. Deborah Peel, founder and chair of Patient Privacy Rights, was part of the second session.

Read the transcript of Dr. Peel’s session here

Watch the video of all sessions here

Living Online: Privacy and Security Issues in a Digital Age

Our lives are increasingly lived online. A large number of Americans routinely exchange information in cyberspace for personal, business, and other purposes. What privacy and security issues present themselves in this relatively new and increasingly ubiquitous space? What particular privacy concerns might apply when specific entities, such as the government, hold or process our information? What particular considerations might apply when the information being transmitted is particularly sensitive, such as health care information or financial information? How do privacy, security, and information ownership concerns function when information is being exchanged on social networking sites?

The November 3, 2009 event featured a lunchtime keynote address by Christopher N. Olsen, the Assistant Director in the Division of Privacy and Identity Protection at the Federal Trade Commission.

A panel discussion was held from 1 – 2:30 pm and featured:

  • Moderator, Jeffrey Rosen, Professor of Law at George Washington University and Legal Affairs Editor for The New Republic
  • Deborah C. Peel, MD, Founder and Chair, Patient Privacy Rights; Chair, Coalition for Patient Privacy
  • Lillie Coney, Associate Director, Electronic Privacy Information Center; Coordinator, Privacy Coalition
  • Alan Davidson, Director of Public Policy, Google

Here is the Video of the Panel:

Tuesday, November 3, 2009
11:30 am – 2:30 pm
Center for American Progress
1333 H. Street NW, 10th Floor
Washington, DC 20005

Who is tracking YOU?

On the Internet ALL your health searches about scary and stigmatizing illnesses, all searches or purchases of books on health, and all searches or purchases of medications and devices are tracked and sold.

It is impossible to search for health information privately via Google, etc.

Health websites take massive advantage of Americans’ powerful expectations that ALL healthcare providers put their interests and their privacy first—expectations which come from the traditional doctor-patient relationship and the ethics that have governed Medicine for 2,400 years (derived from the Hippocratic Oath).

Americans are not yet ready to believe that every aspect of healthcare in the US is profit-driven, rather than driven by the ethical codes all health professionals swear to at graduation: the promises to “do no harm” and to “guard their secrets”.

Americans are not yet ready to believe that Wall Street has taken over Medicine—and that instead of guaranteeing the strong health privacy rights Americans have under the law, Wall Street erases our rights to ensure shareholder profits.