Hands off our data, Americans say

The ideas and innovators shaping health care

Dec 13, 2022 View in browser   By Ben Leonard , Grace Scullion and Ruth Reader CHECKUP The Covid-19 pandemic has not shaken Americans' longstanding preference for keeping their health records private. A new Harris poll on behalf of consulting firm ZS found that most Americans wouldn't share their personal health data, even anonymously — and even if it would help avert another public health emergency. The polling underscores the hurdles facing digital health companies whose success depends partly on Americans' willingness to share data and the challenges facing public health authorities trying to forecast outbreaks and improve care through data analysis. Americans aren't alone in their skepticism. The survey found that people in Japan and Germany were less willing than those in the U.S. to share many types of health-related data. However, people surveyed in China, the United Kingdom and Sweden were more likely to say they were willing to share their health data. For example: – Nearly two-thirds of those surveyed in China said they'd be willing to share their health records anonymously, and nearly three in five said they'd share vital signs. – Fifty-five percent of people surveyed in the U.K. said they'd be willing to share personal info — the highest among the countries surveyed. – A third of people in Sweden said they'd share genetic data, just behind China's 39 percent among the countries surveyed. The researchers said they chose these six countries because they're among the largest global health care markets. They picked Sweden because it represented "a more digitally mature country whose size may have enabled further acceleration of the concepts of connected care."   JOIN THURSDAY FOR A CONVERSATION ON FAMILY CARE IN AMERICA : Family caregivers are among our most overlooked and under-supported groups in the United States. The Biden Administration's new national strategy for supporting family caregivers outlines nearly 350 actions the federal government is committed to taking. Who will deliver this strategy? How should different stakeholders divide the work? Join POLITICO on Dec. 15 to explore how federal action can improve the lives of those giving and receiving family care across America. REGISTER HERE .     WELCOME TO FUTURE PULSE Bryce Canyon National Park, Utah | Grace Scullion This is where we explore the ideas and innovators shaping health care.  Doctors are experimenting with the gene-editing technique CRISPR to enhance cell-therapies like CAR-T and it's showing promise in fighting blood cancer. Are you seeing interesting uses of CRISPR? Share news, tips and feedback with Ben Leonard at bleonard@politico.com, Ruth Reader at rreader@politico.com, Carmen Paun at cpaun@politico.com or Grace Scullion at gscullion@politico.com.  Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. Today in our Pulse Check podcast, Katherine Ellen Foley talks with Megan Messerly about the situation inside hospitals as Covid and flu cases spike and RSV cases remain high. Nearly 30,000 people in U.S. hospitals have tested positive for Covid-19, according to the CDC. That's up 30 percent since Thanksgiving, though still 25 percent below a July bump. Listen to today's Pulse Check podcast TECH MAZE Mark Peterson/POLITICO Americans are excited about the potential of health technology like wearables and apps, but they have significant concerns about privacy and security, according to a new survey from YouGov that the nonprofit think tank Trusted Future shared with Ben. About half of Americans use health apps for fitness, the survey of more than 2,400 people found, and about two in five use smartwatches and wearables to monitor their health. Thirty percent use technology to "proactively" track health conditions like heart problems to bolster preventive care. Concerns remain: Despite this significant level of adoption, consumers fear their health data may not be secure. More than 80 percent of respondents said they worry about their data being sold or shared without consent. About a third of those surveyed said data privacy was either their first or second factor when deciding whether to use health technology. Respondents called on policymakers to take a number of actions to boost trust, including: – Encouraging stronger encryption (52 percent) – Examining privacy impacts of tech proposals before they take effect (51 percent) – Passing comprehensive privacy legislation (46 percent) – Extending pandemic-era telehealth rules (40 percent) – Bolstering broadband access (35 percent) "While harnessing these connected health innovations holds great promise for driving better care, and faster cures, whether and how quickly we achieve these gains is fundamentally dependent on a consumer's ability to trust that technologies are effective, affordable, and designed with privacy and security safeguards built in," Trusted Future said in a release.   A NEW POLITICO PODCAST: POLITICO Tech is an authoritative insider briefing on the politics and policy of technology. From crypto and the metaverse to cybersecurity and AI, we explore the who, what and how of policy shaping future industries. We're kicking off with a series exploring darknet marketplaces, the virtual platforms that enable actors from all corners of the online world to traffic illicit goods. As malware and cybercrime attacks become increasingly frequent, regulators and law enforcement agencies work different angles to shut these platforms down, but new, often more unassailable marketplaces pop up. SUBSCRIBE AND START LISTENING TODAY .     WORKFORCE "We're not keeping pace with the demand of science and tech jobs that are coming down the pike." -- Arati Prabhakar, director of the White House Office of Science and Technology Policy The dearth of women and some people of color in STEM fields is a big part of the problem, said OSTP Director Arati Prabhakar at a White House event. She said the number of women in STEM and the medical field needs to double, the number of Black people needs to more than double and the number of Hispanic people needs to triple by 2030 to meet the economy's needs. To help diversify the field, the White House announced a $1.2 billion initiative on Monday to promote the involvement of women, people of color and other underrepresented groups in the fields of science, technology, engineering, mathematics and also medicine. Alondra Nelson the OSTP's deputy director of science and society, said the funding would do five things: Aim to ensure that every person has the opportunity to participate in and contribute to science and technology Invest in teacher recruitment and training Increase funding for communities, institutions and people historically excluded from federal grant programs Address science's history of bias, exclusion and discrimination Study what interventions work to improve accessibility and participation The initiative was rolled out in tandem with the launch of the STEMM Opportunity Alliance , which will support the goals. The alliance is backed by the Doris Duke Charitable Foundation, a grantmaking nonprofit; the American Association for the Advancement of Science; and 90 other partner organizations and includes an extra "M" in its name for medicine. Why it matters: The National Science Foundation predicts that STEM jobs will grow by 13 percent by 2026, faster than any other sector. WASHINGTON WATCH Rep. Michelle Steel (R-Calif.) wants telehealth rules extended. | Getty Images Lawmakers who want to extend telehealth rules adopted during the pandemic to make it easier for patients to see their doctors when Covid was most virulent are pressuring their leaders to pass legislation to do that this year. – Thirty House lawmakers wrote to House Speaker Nancy Pelosi (D-Calif.) and Minority Leader Kevin McCarthy (R-Calif.) on Monday, calling for an extension of a provision allowing high-deductible health plans to cover telehealth before subscribers have met their deductibles. – And 34 representatives and senators signed a bipartisan letter, led by Sen. Brian Schatz (D-Hawaii) and Rep. Mike Thompson (D-Calif.), asking Senate and House leaders to keep rules making it easier for Medicare patients to have virtual visits. The high-deductible plan rule, established by the March 2020 CARES Act, is set to expire Dec. 31 without congressional action. The lawmakers — led by Reps. Brad Schneider (D-Ill.), Michelle Steel (R-Calif.) and Susie Lee (D-Nev.) — want an extension tacked onto an end-of-year spending package. State of play: The high-deductible plan provision is stuck because some Democrats want to use it as leverage to get funding in exchange for helping hospitals cope with hurricanes and other severe weather. The eased telehealth rules for Medicare beneficiaries, which HHS created and Congress buttressed in the CARES law, expire five months after the end of the public health emergency. That's set to run out in April unless HHS extends it again. But the authors of that letter say an extension through 2024 would create certainty about Congress' support for the eased rules and benefit patients and providers. The Senate Finance Committee is eyeing a potential one-year extension, and its chair, Ron Wyden (D-Ore.), told POLITICO earlier this month he's eager to go as long as possible.   Follow us on Twitter Ben Leonard @_BenLeonard_ Ruth Reader @RuthReader Carmen Paun @carmenpaun   Follow us

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