Brokers Trade on Sensitive Medical Data with Little Oversight, Senate Says

“Marketers maintain databases that purport to track and sell the names of people who have diabetes, depression, and osteoporosis, as well as how often women visit a gynecologist, according to a Senate report published Wednesday.

The companies are part of a multibillion-dollar industry of “data brokers” that lives largely under the radar, the report says. The report by the Senate Commerce Committee says individuals don’t have a right to know what types of data the companies collect, how people are placed in categories, or who buys the information.

The report came in advance of a committee hearing on industry practices Wednesday afternoon.

The report doesn’t contain any new evidence of wrongdoing by the industry, but it underscores the tremendous increase in the sale and availability of consumer information in the digital age. An industry which began in the 1970s collecting data from public records to help marketers send direct mail has become an engine of a global $120 billion digital-advertising industry, helping marketers deliver increasingly targeted ads across the web and on mobile phones.”

To view the full article please visit: Brokers Trade on Sensitive Medical Data with Little Oversight, Senate Says

Testimony of Deborah C. Peel, MD at the ONC’s Patient Matching Stakeholder Meeting

WASHINGTON, DC (December 16, 2013) – Patient Privacy Rights’ (PPR) founder and chair, Deborah C. Peel, MD, submitted written testimony to the U.S. Department of Health and Human Services’ Office of the National Coordinator (ONC) at today’s Patient Matching Stakeholder Meeting. The meeting discussed the initial findings from the ONC’s dedicated initiative to assess which aspects of patient identification matching are working well, where there are gaps, and where improvements are needed.

 

In her prepared testimony, Dr. Peel said that “the Initial Findings address the problems caused by current institutional health information technology (health IT) systems and data exchanges.” However, she also stated that the findings may not adequately address future needs, nor do they foresee how the meaningful use requirements for the Health Information Technology for Clinical Health (HITECH) Act can resolve many of the current problems with patient identity and patient matching.

 

Arguing that the findings present a tremendous opportunity to create and leverage genuine patient engagement, Dr. Peel said that “patients have more interest and stake in data integrity and safety than any other stakeholder.” Describing PPR’s vision of the future, Dr. Peel outlined how meaningful patient engagement will eliminate many of the complex problems caused by current patient identity systems, matching technologies, and algorithms. She also said that meaningful patient engagement means that patients can access, control, or delegate how their personal information is used and disclosed, as well as monitor all exchanges of their health data in real time.

 

Additionally, Dr. Peel discussed key elements for meaningful patient engagement based on Fair Information Practices (FIPs) and federal law. She said that all data holders and all health data aggregators should operate as HIPAA covered entities and should be known to patients. In order to provide accountability and transparency, she said that each data aggregator should provide Notice of Privacy Practices (NPPs), voluntary patient-controlled IDs, patient and physician portals, Direct Secure email between patients and physicians Blue Button Plus (BB+), and real time accounting of disclosures.

 

In her concluding remarks, Dr. Peel stated that polices and best practices should consider how future health IT systems and data exchanges will operate, and should “anticipate meaningful patient and physician engagement, lowering costs, improving data quality, integrity and patient safety.” She urged the ONC to require, promote, and incentivize the rapid adoption of technologies that meaningfully engage patients as described in her testimony.
The complete text of this testimony is here.

Can Big Data Make Healthcare Better, Cheaper?

December 12, 2013
Medical records are being digitized on a massive scale to bring down the costs of healthcare and, maybe, to produce better outcomes. It also means a loss of patient privacy. President Obama’s Affordable Care Act promotes the digitization of millions of medical records to measure outcomes and contain costs. Big Data may also help doctors better understand many diseases, who’s most likely to get them and what the best treatments might be. It also makes the most intimate kind of personal information available to the government, insurance and drug companies — even prospective employers. Should patients be able to say “yes” or “no?”

 

Host, Warren Olney of NPR affiliate KCRW, interviews Dr. Deborah Peel, to discuss the risks and the benefits of Big Data in the field of medicine. She is joined by fellow panelists Joel Dudley, Department of Genetics and Genomic Sciences, Mt. Sinai Medical School, Iya Khalil, Executive VP and Co-Founder, GNS Healthcare, and Nortin Hadler, Professor of Medicine and Microbiology/Immunology, University of North Carolina at Chapel Hill.
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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

Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Research ask 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.”

To view the full article, please visit: Don’t Let EHR Vendors Own Your Data

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

 

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

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

Rejecting Billions, SnapChat Expects a Better Offer

To view the full article, please visit: Rejecting Billions, SnapChat Expects a Better Offer

SnapChat made front page of NYTimes this morning valued at BILLIONS by WallStreet! This is huge news: the very first privacy app worth billions! If people/industry value control over pictures IMAGINE how many millions of people would want privacy apps to control health data!