Newsletter Archive
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Quick Takes: The Rise of the Data Sharing Agreement
January 27, 2026by Meghan MauryRead MoreThe Privacy Act of 1974 was designed to give people at least some control over how the federal government uses and shares their personal data. Under the law, agencies must notify the public when they plan to use personal information in new ways – including when they intend to share it with another agency – and give the public an opportunity to weigh in.
At dataindex.us, we track these data-sharing notices on our Take Action page. Recently, a pattern has emerged that you might miss if you’re only looking at one notice at a time.
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Take Action! ASTP/ONC Deregulatory Actions and More
January 26, 2026by Meghan MauryRead MoreProposed Rule of the Week: Health Data, Technology, and Interoperability: ASTP/ONC Deregulatory Actions To Unleash Prosperity. This proposed rule aims to "remove duplicative and unnecessary requirements of the ONC Health IT Certification Program." To achieve this goal, HHS is removing more than half of its health IT certification criteria, changing a half dozen of the remaining criteria, and maintaining the remaining 19 criteria as is. The patient demographics criteria are being revised to remove requirements to collect sexual orientation, gender identity, name to use, and pronouns. HHS is also removing criteria related to restrictions on data re-disclosure, care plans, transparency and risk-management requirements, privacy and security, and accessibility-centered design.
Comments due February 27.Every time the government makes a change to a survey or a form — or introduces a new survey or form — you have the right to weigh in on that decision. The Take Action! newsletter highlights surveys or forms the government is changing, renewing, or introducing. Click the links to tell the government what you think about the changes they are making.
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Take Action! Medical Expenditure Panel Survey and More
January 21, 2026by Meghan MauryRead MoreSurvey of the Week: Medical Expenditure Panel Survey — Household Component. MEPS collects data on the specific health services that Americans use, how frequently they use them, the cost of these services and how they are paid for, as well as data on the cost, scope, and breadth of health insurance held by and available to U.S. workers. HHS is making a number of changes to the MEPS, including removing questions on birth control, gender, aspirin use, and counseling; adding questions about use of sleep medication, trouble getting to sleep, screen time, use of wearable devices, self-assessed diet quality, fruit and vegetable consumption, meals eaten away from home, former smoking, and weight loss attempts; and making changes to a number of other questions.
Comments due March 2.Every time the government makes a change to a survey or a form — or introduces a new survey or form — you have the right to weigh in on that decision. The Take Action! newsletter highlights surveys or forms the government is changing, renewing, or introducing. Click the links to tell the government what you think about the changes they are making.
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The Day Federal Data Went Dark: A Year of Monitoring and Action
January 20, 2026Read More -
Take Action! American Community Survey and More
January 12, 2026by Meghan MauryRead MoreSurvey of the Week: American Community Survey and Puerto Rico Community Survey. The ACS and PRCS collect detailed social, economic, housing, and demographic data on over 40 topics. In 2027, Census plans to add an internet self-response option to the PRCS and to update the race and ethnicity questions in both surveys to align with OMB's SPD-15 standards.
Comments due February 17.Every time the government makes a change to a survey or a form — or introduces a new survey or form — you have the right to weigh in on that decision. The Take Action! newsletter highlights surveys or forms the government is changing, renewing, or introducing. Click the links to tell the government what you think about the changes they are making.