Healthcare Reform - Whose Data Is It Anyway?

January 20, 2023

Jan 20, 2023

Good Day Healthcare Advocates

Every day we advocate for better healthcare for all of us is a good day. Thank you also to all of you advocates who have recently subscribed and to those who have asked for particular topics (use the comment button below). Some of the topics in work are the middlemen benefit managers and rural healthcare. Thank you.

Mission

The Healthcare delivery system in the United States is a patchwork that leaves much to be desired. It is the most expensive system among the top 35 industrial countries and covers far fewer participants delivering lower levels of quality care than many of our peer nations. This blog will provide:

Current problems in healthcare
Actions you can take
References

Current State of Affairs - Whose Data is it Anyway?

My wife and I used to be software engineers, and an important lesson we learned is that if the software is free, often you are the product. Software loaded onto your phone/computer can allow others to see what interests you have, where you are and how you behave. Once that data is available it can be sold and used. Here are some examples, browsers can keep track of items you may be shopping for and target ads based on your searches and location. If you give permission, then your auto insurance company can read your car’s black box and see if you follow traffic regulations and set your premiums appropriately. Health information is different and Congress thought it was protected but it isn’t and the results are much more nefarious.

Recently a Nebraska woman and her teenage daughter were prosecuted for seeking an abortion when their direct messages to each other were provided to the police by Facebook. Data exchanges are being used to criminalize and harm those that seek reproductive health.

The federal Health Insurance Portability and Accountability Act (HIPAA) was designed to protect our sensitive personal and health related data. When it was implemented no one ever thought such data would be so widely available. HIPPA protections only apply to healthcare providers. There are plenty of non-HIPPA facilities, like FAKE CRISIS PREGNANCY CENTERS (CPC) , to which it does not apply and they don’t have to protect your data. CPCs often mislead patients about their services. Pregnant patients often contact CPCs looking for abortion care. Their data is collected by the CPC and has been shared with anti-abortion groups who then can then target them with harmful and harassing anti-abortion messaging.

There are also health apps that can be used to track menstrual cycles. There can be variation in cycles and tracking can provide women with valuable health trends. These apps can sell a user’s data about late periods or miscarriage to a data broker who can then sell the data to law enforcement in states where abortion is restricted and can then be used as evidence to prosecute the user. After all, the data is not protected and can be sold.

Geofencing is location based targeting and advertising. Your cell phone has a GPS chip and can always know your location. Geofencing is used around some healthcare facilities to target those in the fence area with smartphones with ads and harassing messages. This technique has been used by anti-abortion groups to harass people in geofences around abortion facilities.

In Washington State we have legislation proposed to try and address this problem. HB 1155

Seeks to require entities that collect personal health data to maintain and publish a privacy policy for consumers health data.
Block entities from collecting and sharing personal health data without consent.
Protect personal health data from being sold to third parties.
Guarantee the right to withdraw consent and request that the data be deleted.

Thank you to Pro-Choice Washington for their summary of HB 1155

(https://prochoicewashington.org/)

Note that if we had universal healthcare with full reproductive healthcare rights this would not be an issue.

What You Can Do – Contact Legislators -

Use RESISTBOT below or call your Senators and Representative with the following script.

Reference section has link to their phone numbers.

“My name is _______________ (insert name) and I live in zipcode ___________ and I’m your constituent.

We all deserve to have our healthcare data be private. It should not be collected and sold and used to harm us. This is especially true for any reproductive health data. HIPPA does not apply to non-healthcare entities and that gap can harm us.

I want you to create/sponsor and support legislation that is similar to Washington’s HB 1155 (2023) that will:

Require entities that collect personal health data to maintain and publish a privacy policy for consumers’ health data.
Block entities from collecting and sharing personal health data without consent.
Protect personal health data from being sold to third parties.
Guarantee the right to withdraw consent and request their data be deleted.

I need you to do this to protect all of us. Thank you!”

RESISTBOT

Text SIGN PBAXRJ to 50409 to send the letter below to your Senators and Representative

We all deserve to have our healthcare data made private. It should not be collected and sold and used to harm us. This is especially true for any reproductive health data. HIPPA does not apply to non-healthcare entities and that gap can harm us.

I want you to create/sponsor and support legislation that is similar to Washington’s HB 1155 (2023) that will:

Require entities that collect personal health data to maintain and publish a privacy policy for consumers’ health data.
Block entities from collecting and sharing personal health data without consent.
Protect personal health data from being sold to third parties.
Guarantee the right to withdraw consent and request their data be deleted.

I need you to do this to protect all of us. Thank you.

EXTRA CREDIT - State of Washington Only

Click on this link to tell your Washington representatives you support HN 1155 “Addressing the collection, sharing, and selling of consumer health data.“ Click on comment on the bill, enter your address and hit verify, select your 3 representatives, then select support and submit. Any comment you want to add is frosting on the cake.

References