More warnings on Facebook patient groups

With help from Arthur Allen (@arthurallen202) and Darius Tahir (@dariustahir)

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Quick Fix

— More warnings on Facebook patient groups: Two advocates who reported the social media giant’s privacy practices to the FTC have renewed their call for updates to the “group” settings.

— Microsoft, Pew throw weight behind ONC proposal: They urged Congress to support the HHS agency in its approach to defining exceptions to information blocking.

— The call to reauthorize PCORI: "Friends of PCORI Reauthorization” is resuming its campaign to ensure that the comparative effectiveness institute remains funded.

eHealth tweet of the day: Elisabeth JD MPH, @EJAllstonEsq, "@cvspharmacy just sent a text for my asthmatic cat recommending that she get one inhaler for home and another inhaler for school.”

IT’S FRIDAY at Morning eHealth, where your author is looking for examples of useful apps you’ve sent your health records to. Are there are any on the market yet? Let us know at [email protected]. Tweet the team at @arthurallen202, @dariustahir, @ravindranize, @POLITICOPro and @Morning_eHealth.

Driving the Day

PATIENT ADVOCATES ESCALATE PRESSURE ON FACEBOOK TO MODIFY PRIVACY SETTINGS — Andrea Downing and Fred Trotter are taking their complaints public after reporting their concerns both to Facebook and the FTC.

In a blog post this week, Trotter, a security researcher, detailed ways in which Facebook users’ membership in certain groups could betray details about their health status, despite Facebook’s gradual modifications to group privacy settings. A user’s membership in a clinical support group could reveal to employers, insurers or malicious actors that they have certain conditions, he wrote — and some settings allow members to view the names of everyone in such groups.

He and Downing, who leads a group for patients with the BRCA breast cancer susceptibility gene, said they published the post after previous complaints to the FTC were left out of that agency’s recent $5 billion settlement. In those complaints, they argued that Facebook should be regulated as a personal health record — especially since so many patients use it to share sensitive information with each other, and since Facebook has promoted its platform as a destination for patients who want peer-to-peer support.

...Among Trotter’s complaints is that some users might not realize they were added, without their explicit approval, to clinical support groups. About a year ago, Facebook removed the option to add friends to groups without their approval, and automatically removed any users who had not visited, “liked,” commented, or posted on a page and gave them the option to rejoin. But there may still be users who “do not realize that they were force-added to clinical support groups,” and who don’t understand that visiting or interacting with messages kept them in that group, Trotter wrote.

HEALTH IT GROUPS ASK CONGRESS TO SUPPORT ONC PROPOSAL — Not everyone’s behind the information blocking rule proposal that ONC unveiled in February and is currently refining. Some health IT and vendor groups have said the draft — which defines exceptions to the 21st Century Cures Act’s ban on interfering with heath data transfer — is too burdensome, costly and vague, even suggesting the agency should start over.

...But the Pew Charitable Trusts, Microsoft and a handful of other health groups took the opportunity this week to express their wholehearted support for the draft, and to urge Congress to do the same. In a letter to Senate HELP Chairman Lamar Alexander (R-Tenn.) and ranking member Patty Murray (D-Wash.) and House Energy and Commerce Chairman Frank Pallone (D-N.J.) and ranking member Greg Walden (R-Ore.), co-signers applauded the proposal to adopt FHIR standards to make health data transfer more seamless and suggested using the most recent version for that standard.

In addition to Microsoft and Pew, signees included the American Academy of Family Physicians, American Academy of Neurology, American Health Information Management Association, American Medical Informatics Association, CARIN Alliance, SMART Health IT/Boston Children’s Hospital, and the Commonwealth Fund.

WHAT PCORI FUNDING MEANS FOR HEALTH DATA — The Friends of PCORI Reauthorization coalition is taking up its call to fund the comparative clinical effectiveness research institute whose authorization expires at the end of the month. The group specifically endorsed the PATIENT Act, approved by the House Ways and Means Committee earlier this summer, which would reauthorize the Patient-Centered Outcomes Research Institute for seven years.

Reauthorization, advocates said during a briefing in Washington this week, would also support PCORnet, a clinical research network to which hospitals, health systems and other groups can contribute patient evidence from clinical or claims records. NIH’s All of Us project, aiming to gather biospecimens and survey data from at least a million patients, will be useful to researchers, but there’s a lot of valuable information already in patients’ records through PCORnet, said PCORI’s Andrew Hu.

Technology

GERMANY’S PLAN TO CONTROL ITS OWN DATA — German lawmakers and industry leaders have a plan to break free from foreign-owned digital infrastructure, including by developing a European cloud-hosting service called Gaia-X, our POLITICO colleague Janosch Delcker reports.

..."The effort comes amid a broader push by European Commission President-elect Ursula von der Leyen to bolster the bloc’s ‘strategic autonomy’ — defending EU interests thanks to a stronger home-grown industry, more innovative technology and more powerful defense capabilities,” Janosch writes. “The ability to store sensitive information with trusted hosts, or cloud providers, is seen as particularly key to German interests.”

Health IT Business Watch

CISCO SCORES NYC HEALTH IT CONTRACT — Board members for NYC Health + Hospitals unanimously approved a $51.9 million, 33-month contract with Cisco for IT maintenance and services this week, our POLITICO colleague Amanda Eisenberg reports. Cisco offered about a 50 percent discount on the contract, which runs from Oct. 1 to June 2022, if the public health system agreed to pay the total amount up front.

...Health + Hospitals needs upgraded networking equipment like email security and firewalls, Amanda reports. Cisco will also set up wireless networks in its Bellevue, Metropolitan, McKinney and Sea View facilities, along with other Health + Hospitals clinics.

GOOGLE ROLLS OUT NEW LOCATOR SERVICES — Users of Google Maps will find it easier to locate naloxone and recovery support services, the company announced this week. Users will be able to find naloxone at pharmacies in 50 states, or 83,000 recovery support meetings, like AA and NA. The recovery services are sourced from nonprofit Transforming Youth Recovery.

Research Corner

TESTING OUT TEXT-BASED COUNSELING — The National Institute on Drug Abuse has awarded researchers at the University of Tennessee, Knoxville, and Colorado State University $3.2 million to examine whether a text-based counseling program can impact cannabis use disorder.

FDA APPROVES X-RAY READING AI — An algorithm that screens X-rays for a collapsed lung scored the FDA’s approval this week. Researchers at GE Healthcare and the University of California, San Francisco developed the AI-based technology.

Names in the News

Energy Secretary Rick Perry said he was offered, and turned down, the top spot at the VA. ... Doctor on Demand named Robin Cherry Glass its president and chief commercial officer, and David Dean its vice president of business development. ... The College of Healthcare Information Management Executives has a new 5G Committee, chaired by Shafiq Rab.

What We're Reading

— Patient-centered outcomes should figure prominently in quality measurements, argue Aparna Higgins, Dana Gelb Safran, Nick Fiore, Elizabeth Murphy and Mark B. McClellan in Health Affairs.

— The growing popularity of consumer genetic tests means sperm clinics can no longer guarantee anonymity to their clients, Stat’s Meghana Kashavan reports.