Consumers feel like they have little control over data collected on them. Users of #reprohealth apps have reason to be wary. @ConsumerReports tested 5 apps and found shortcomings in the way all handle the sensitive user data they collect.
Repro health apps are offered as an empowerment tool for consumers eager for power and agency over their health. Yet at the same time, many health apps do not have proper privacy standards in place, which too often results in sensitive health data falling into the wrong hands.
US privacy laws are a safety net with more gaps than coverage. Health privacy laws that consumers rely on to protect sensitive details abt themselves do not extend to health tech like repro health apps. The bar is low. As a purveyor of wellness, app developers should aim higher
Health apps have the same data privacy rights as any other app--which is very little. Consumers have a choice which health apps they use (if any at all) and they should reject apps that put profit ahead of privacy. #OutOfControl
Privacy is about more than avoiding embarrassment; it's about avoiding discrimination. The information collected about us affects our experiences in the marketplace and the world even if we don't know about it. #OutOfControl
We need stronger laws + enforcement to force apps to stop eavesdropping on our lives & profiting off our info. #PrivacyOverProfits

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More from @HealthEDena

Sep 30, 2020
In a recent @Health_Affairs Blog post, @HealthPrivacy, @SavageMeHealth, and I search for the right prescription for health data privacy. The AMA's new Privacy Principles served as food for thought.… (1/4)
In our post, we detail the laudable advances put forward in the @AmerMedicalAssn's Privacy Principles, including principles on: increasing transparency, increasing health equity, and precautions against digital phenotyping. (2/4)
We also detail key differences between AMA's principles and HIPAA regulations. If you like comparison tables, you're in luck! We made a side-by-side comparison of the AMA Privacy Principles and HIPAA. (3/4)…
Read 4 tweets
Aug 18, 2020
Wearables and in-home sensors offer great promise for affordable, accessible, equitable, high-quality care. But the data creates a safety issue that extends beyond the body. Want to learn more? Check out @GoldsackJen @_DiMeSociety and my latest blog
Professional codes of ethics, laws, and regulations set patient privacy protections within healthcare. For good reason: patients should control access their health information.

But shaky data rights in the U.S. mean health tech could unwittingly putting patients' data at risk.
It’s time that data rights are central to our definition of “patient safety.” Specifically, we propose that patient safety in the digital era be redefined to include the risk of harm to individuals through digital health technologies and the data they generate.
Read 5 tweets
Nov 22, 2019
Your regular reminder that HIPAA + other health privacy laws don’t apply to DTC genetic testing companies. When you take a test, you share your family genetic info. When you test your kid, you make a choice about their privacy that can't be undone when they're older.
Read 5 tweets
Aug 29, 2019
.@CRAdvocacy supports @ab824, which would help ensure that the pathways for entry by affordable generic alternatives stay open, so that budget-conscious consumers will have choices, and will not have to continue paying unjust monopoly prices for the medications they need. 1/4
What we're talking about here is prohibiting anti-competitive "pay for delay" schemes, where brand-name prescription drug makers effectively pay-off makers of more affordable generic (or biosimilar) alternatives so the brand-name drug maker can prolong its monopoly profits. 2/4
.@ConsumerReports has covered the issue of Rx affordability many times over the years. This recent article re-confirmed that escalating Rx costs force many consumers to choose between cutting back on needed medications or on other basic necessities.… 3/4
Read 4 tweets
Apr 23, 2019
Wellness programs are promoted as improving wellness, and they’re having a moment. But, they may not be a fair deal for enrollees. @ConsumerReports explains why wellness programs may not be all they appear.…
Last year, 82% of larger companies & 53% of smaller firms offered some type of wellness program…
But, problems lurk just below the surface of wellness programs.
Read 9 tweets
Jan 28, 2019
This Data Privacy Day, it’s time for a deep dive on your health privacy. #PrivacyAware 1/7
Patients have the right to their med records but getting their hands on it can involve jumping through hoops – it doesn’t have to. Patients have the right to their health data. HC providers must respond to requests for med records within 30 days. #PrivacyAware 2/7
The right to your medical info is set in a law called HIPAA. That’s with one ‘P’ – two Ps is for HIPPO. A hippo may be the world’s deadliest animal, but in most cases it has nothing to do with healthcare. @privacyrights explains your rights via….
Read 7 tweets

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