‘The CDC doesn’t get modern computing’

The ideas and innovators shaping health care

Feb 28, 2023 View in browser   By Ben Leonard, Erin Schumaker and Ruth Reader TECH MAZE Rucker launched TEFCA but says it's just a way station. | Courtesy of Don Rucker Don Rucker oversaw the beginning of a project to connect electronic health records nationwide when he was the government’s national coordinator for health IT during the Trump administration. The Trusted Exchange Framework and Common Agreement, the health data sharing project known as TEFCA, is still in process seven years after Congress mandated it in a 2016 law. Rucker, now the chief strategy officer for startup 1upHealth, which aims to facilitate health data sharing for payers and providers, is critical of how TEFCA has evolved. Ben caught up with him to discuss what needs to happen to get data flowing. The interview has been edited for length and clarity. I’ve heard you describe TEFCA as a first step. Is that still how you feel about it?  TEFCA, frankly, is really a transitional way of doing stuff. It’s based on 1990s technology, a document-centric approach, rather than individual data fields. When it came out, the internet was about web pages as opposed to computing. If you look at modern population health management — devices on your phone and wearables — it’s all about individual data fields and real-time computing. That’s not what TEFCA is about. The Centers for Disease Control and Prevention thinks TEFCA can help it better understand public health trends. Do you see that? The CDC doesn’t get modern computing. If you want to fight the next pandemic, where you actually have to monitor a population in real-time, you can’t generate enough queries to do that. TEFCA doesn’t lend itself to population-based surveillance. CDC should totally shift its focus from trying to ingest little pieces of information to funding every gap in health information exchanges in the states. What do you think the biggest challenges are for TEFCA going forward?  From a public point of view, it doesn't really allow computing on how to provide better care in a modern, Big-Data-AI-informed way because it's about one patient’s data at a time. HHS has selected a group of six organizations it wants to take the next steps in the data-sharing program. Does it need to involve a larger group? What we really need in American health care is competition. Does this embed incumbency or is this like the rest of the internet where totally new business models can come in? My sense is it does not facilitate new business models.   JOIN POLITICO ON 3/1 TO DISCUSS AMERICAN PRIVACY LAWS: Americans have fewer privacy rights than Europeans, and companies continue to face a minefield of competing state and foreign legislation. There is strong bipartisan support for a federal privacy bill, but it has yet to materialize. Join POLITICO on 3/1 to discuss what it will take to get a federal privacy law on the books, potential designs for how this type of legislation could protect consumers and innovators, and more. REGISTER HERE.     WELCOME TO FUTURE PULSE Ludlow, Vt. | Shawn Zeller This is where we explore the ideas and innovators shaping health care. There’s new health care lingo on Dictionary.com, allowing web surfers to look up definitions for superdodger (someone who’s immune to a virus), subvariant (a form of a virus that arises when a variant of the original mutates), microdosing (taking very small amounts of a drug), and 988 (the new suicide hotline). We think some of the new non-health care terms are more noteworthy, like petfluencer (a social media influencer known for posting pet content) or cakeism (the false belief that one can have it both ways). Share any thoughts, news, tips and feedback with Ben Leonard at bleonard@politico.com, Ruth Reader at rreader@politico.com, Carmen Paun at cpaun@politico.com or Erin Schumaker at eschumaker@politico.com. Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. Today on our Pulse Check podcast, Megan Messerly talks with host Alice Miranda Ollstein about the yearlong deadline for states to assess whether residents on Medicaid are still eligible for the program — and Arkansas' plan to finish its assessment in half that time. Megan previews what's in store for Medicaid there and in other states. Listen to today's Pulse Check podcast THE REGULATORS HHS is reorganizing to combat hacking. | Sean Gallup/Getty Images To address spiking data breaches, the Department of Health and Human Services is reorganizing. Its Office for Civil Rights, charged with investigating breaches and ensuring health care organizations fulfill their responsibilities to protect patient data, is poorly equipped for the job. The office has fewer investigators than many local police departments. Office for Civil Rights Director Melanie Fontes Rainer hopes the reorganization will help her office make better use of its limited resources. What’s happening: The new divisions — Enforcement, Policy and Strategic Planning — were formerly the responsibility of the Health Information Privacy, Operations and Resources, Civil Rights and Conscience and Religious Freedom divisions. In addition, the office is changing the name of its Health Information Privacy Division to Health Information Privacy, Data and Cybersecurity Division to reflect the division’s role in cybersecurity. The reorganization is meant to bring the office in line with peer departments, namely the Department of Education’s Office for Civil Rights. Teams will be organized by skill set to best use the office’s limited budget, according to an HHS statement. Why it matters: The Office for Civil Rights’ caseload has ballooned. It received 51,000 complaints in 2022, up 69 percent from 2017, Fontes Rainer said. Sixty-six percent of those cases were alleged violations of health information privacy and security law. Reports of large breaches of unsecured protected health information have also risen in recent years. In 2021, there were 714 breaches affecting 500 or more people, compared with 663 large breaches in 2020. That trend is expected to continue, according to HHS.   LISTEN TO POLITICO'S ENERGY PODCAST: Check out our daily five-minute brief on the latest energy and environmental politics and policy news. Don't miss out on the must-know stories, candid insights, and analysis from POLITICO's energy team. Listen today.     WASHINGTON WATCH Twitter owner Elon Musk sacked the social media site's accessibility team. | AP Twitter owner Elon Musk has laid off more than half of its staff and Sen. Ed Markey (D-Mass.) says that’s proving costly for Twitterati with disabilities. Among those sacked were Twitter’s accessibility team, Markey lamented in a letter to Musk, calling the decision “a dramatic and unwelcome shift” with “devastating consequences.” Markey said the move has led to the removal of key features for people who are hard of hearing, like closed captioning for the group call platform Twitter Spaces. The senator also called out the decision to no longer allow third-party apps to connect to Twitter for free. Markey said some blind and visually impaired users preferred outside apps like Twitterific that were more compatible with screen readers than Twitter itself. In his missive, Markey asked Musk questions about Twitter’s disability features, including one that suggested more oversight to come: Is Twitter compliant with the Americans with Disabilities Act? He said he expects Musk to respond by March 17.   Follow us on Twitter Ben Leonard @_BenLeonard_ Ruth Reader @RuthReader Carmen Paun @carmenpaun Erin Schumaker @erinlschumaker   Follow us

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