Thread by @NexusOfPrivacy

My Health My Data heads to the Senate floor!

Washington privacy legislation update, April 4 #waleg

TL:DR: the vote on ESHB 1155 may be as early as tomorrow. And the stakes are high!

privacy.thenexus.today/my-health-my-d…

A quick summary:

- Republicans are likely to continue to vote against My Health My Data's protections for our health data and pregnant people

- Corporate Democrats are pressing to weaken the bill

- Privacy advocates continue to push to strengthen it. #waleg

The full post has details on the background of how we got here, a look at potential floor amendments, and a preview of what's next if the Senate does indeed pass an amended version of ESHB 1155.

privacy.thenexus.today/my-health-my-d…

At 12:30, I'll hopefully be live-tweeting the media event with @AGOWA and #MyHealthMyData bill sponsors @SlatterVandana and @Dhingrama, including discussion of polling results regarding the privacy of reproductive health data. Stay tuned!

tvw.org/video/attorney…

@AGOWA @SlatterVandana @Dhingrama And we're live! @AGOWA kicking things off. Summarizes bill: "My Health My Data makes it unlawful to sell Washingtonians health data, or collect or share health data without consent."

Highlights that HIPAA doesn't protect data from apps, websites, or non-HIPAA entities #waleg

[Actually, the current version of My Health My Data *doesn't* make it unlawful to sell Washingtonian's health data -- although it does require a signed authorization.]

@AGOWA highlights the stakes:
- states prosecuting people who get to abortions
- so-called "crisis preganancy centers" sharing pregnant people's data with anti-abortion groups without their consent

@nwprogressive commissioned a poll. 76% of respondents support these privacy protections -- inlcuding 70% strongly support.

"it's an important bill", calls out legislators and his team including Andrea Alegrett -- who have done a great job!

@SlatterVandana thanks House colleagues Reps. Thai, Fosse, Entenman, Callan, Kloba, Ramos, and a couple of others I missed. Great to see so many strong privacy supporters there!

"We must protect all Washingtonians health data -- and people who travel here." Notes that Dobbs decision changed privacy landscape, seeing attacks on right to privacy, bodily autonomy, and safe access to health care.

@SlatterVandana is on fire! Notes that for only $160, data brokes will sell data on who's visited clinics. Also highlights that ads can be weaponized. Talks about the incredible outpouring of support

Slatter talks about six months of meetings, ensuring original intent remains strong, without unintended consequences. "Will we rise to the occasion and pass this bill? Or will we fall short?"

Cites an intern talking about her 86-year-old grandma who recently died. "She had more rights in her lifetime than I do!"

@SlatteVandana ends on a powerful note: "My Health, My Data, My Choice"

Now @Dhingrama , also introduces @SenatorTrudeau (who's done amazing work). Talks about the pervasive use of technology today, its value and also its risk. Also cites @josephfcox' story about data brokers selling lists of people visiting clinics for $160 vice.com/en/article/m7v…

@Dhingrama notes that this would be the first bill of its kind in the nation. A huge milestone!

Andrew from @nwprogressive thanks Law & Justice committee for their work on the bill (I agree!), urges Senate to pass it.

Goes over the polling numbers.

Do you strongly support blocking health apps from sharing data without consent, prohibiting tracking of visitors to health facilities, posting privacy policies?

76% support

There wasn't a single group in the crosstabs that oppose it.

"Even Donald Trump voters want My Health My Data" -- 51% strongly support it. Not that surprising in Washington. "I hope our leadership can inspire other states"

Alicia, a pro-choice activist, shares her story. At a routine scan, she discovered her baby had a fatal defect. Turned to online facebook groups and apps to get information about what to do.

"Without even thining about it I provided data about myself. Anti-abortion trolls started using that data against me. I can't imagine the stress it would cause to day if I was at risk of being arrested."

Alicia talks about the importance of passing the bill with strong private right of action -- including the per se clause. "Washington has the opportunity to be innovative and bold in protecting people's access to necessary health care ... A right without a remedy is not a right"

Courtney of @PPAAWest follows up on the key points. Notes that so-called "crisis pregnancy centers" aren't covered by HIPAA, period-tracking apps can sell information to data brokers, law enforcement can purchase profiles and use it to prosecute people.

"Our doctors are telling us that patients are feeling scared.... It's an even deeper fear for patients coming from Idaho. Patients should be able to trust their health data won't be used against them."

Courtney notes that states like Washington have a critical role, providing care to people from neighboring states (something @mclemoremr helped me understand). Urges passing the legislation.

Question about so-called "crisis pregnancy centers". Are they not covered by HIPAA because they're not medical facilities? yes, exactly. @AGOWA calls it "insidious". As @SlatterVandana notes, "once they have your data, they have it."

Question about process: it's on the floor calendar, @Dhingrama has a striker, expecting more amendments. "We have a very strong bill, with a strong private right of action."

@AGOWA talks about the private right of action: individuals can also file lawsuits, just as they can with the Consumer Protection Act.

@SlatterVandana introduces Sen. Randall, and Rep Reed.

@AGOWA wraps up: 76%!

And that's it! Very powerful, great work by @AGOWA, @SlatterVandana, and @Dhingrama. And now, on to the Senate floor!

Here's this morning's post, with a lot more detail.

privacy.thenexus.today/my-health-my-d…

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