Jodi Daniel

@BenSasse I’m so sorry to hear this. I fondly remember working together at HHS on healthIT policy and have followed your path over the years. I wish you and your family peace at this difficult time.

Friends- This is a tough note to write, but since a bunch of you have started to suspect something, I’ll cut to the chase: Last week I was diagnosed with metastasized, stage-four pancreatic cancer, and am gonna die. Advanced pancreatic is nasty stuff; it’s a death sentence. But I already had a death sentence before last week too — we all do. I’m blessed with amazing siblings and half-a-dozen buddies that are genuinely brothers. As one of them put it, “Sure, you’re on the clock, but we’re all on the clock.” Death is a wicked thief, and the bastard pursues us all. Still, I’ve got less time than I’d prefer. This is hard for someone wired to work and build, but harder still as a husband and a dad. I can’t begin to describe how great my people are. During the past year, as we’d temporarily stepped back from public life and built new family rhythms, Melissa and I have grown even closer — and that on top of three decades of the best friend a man could ever have. Seven months ago, Corrie was commissioned into the Air Force and she’s off at instrument and multi-engine rounds of flight school. Last week, Alex kicked butt graduating from college a semester early even while teaching gen chem, organic, and physics (she’s a freak). This summer, 14-year-old Breck started learning to drive. (Okay, we’ve been driving off-book for six years — but now we’ve got paper to make it street-legal.) I couldn’t be more grateful to constantly get to bear-hug this motley crew of sinners and saints. There’s not a good time to tell your peeps you’re now marching to the beat of a faster drummer — but the season of advent isn’t the worst. As a Christian, the weeks running up to Christmas are a time to orient our hearts toward the hope of what’s to come. Not an abstract hope in fanciful human goodness; not hope in vague hallmark-sappy spirituality; not a bootstrapped hope in our own strength (what foolishness is the evaporating-muscle I once prided myself in). Nope — often we lazily say “hope” when what we mean is “optimism.” To be clear, optimism is great, and it’s absolutely necessary, but it’s insufficient. It’s not the kinda thing that holds up when you tell your daughters you’re not going to walk them down the aisle. Nor telling your mom and pops they’re gonna bury their son. A well-lived life demands more reality — stiffer stuff. That’s why, during advent, even while still walking in darkness, we shout our hope — often properly with a gravelly voice soldiering through tears. Such is the calling of the pilgrim. Those who know ourselves to need a Physician should dang well look forward to enduring beauty and eventual fulfillment. That is, we hope in a real Deliverer — a rescuing God, born at a real time, in a real place. But the eternal city — with foundations and without cancer — is not yet. Remembering Isaiah’s prophecies of what’s to come doesn’t dull the pain of current sufferings. But it does put it in eternity’s perspective: “When we've been there 10,000 years…We've no less days to sing God's praise.” I’ll have more to say. I’m not going down without a fight. One sub-part of God’s grace is found in the jawdropping advances science has made the past few years in immunotherapy and more. Death and dying aren’t the same — the process of dying is still something to be lived. We’re zealously embracing a lot of gallows humor in our house, and I’ve pledged to do my part to run through the irreverent tape. But for now, as our family faces the reality of treatments, but more importantly as we celebrate Christmas, we wish you peace: “The people walking in darkness have seen a great light; on those living in the land of deep darkness a light has dawned….For to us a son is given” (Isaiah 9). With great gratitude, and with gravelly-but-hopeful voices, Ben — and the Sasses

#ghostbusters in Bethesda this morning

Technology companies supporting check in require a patient to check the box without giving them the notice. @HHSOCR should put out guidance stating that this widespread practice is non-compliant.

Really?! The point of the HIPAA notice is to provide notice. The point of the acknowledgement of receipt of notice is to ensure the patient has actually received it. We can debate the policy but if a patient is asked to acknowledge receipt then the provider MUST give it to them!

HHS event to operationalize #TEFCA - a governance framework for health information exchange. @ONC_HealthIT has been working on health information governance for over a decade. healthit.gov/buzz-blog/from…

On May 18, 2023, the Federal Trade Commission (“FTC”) announced a Notice of Proposed Rulemaking (“NPRM”) to amend the Health Breach Notification Rule (“HBNR”). Read more: CVSoci.al/RruTVPDO

The FTC has taken a number of actions this year against healthcare apps based on data practices that FTC alleges are a violation of federal law. This area is heating up! Read more: CVSoci.al/zjXxPrfg

On May 17, the FTC announced an enforcement action against Illinois-based Easy Healthcare Corporation. Read more by Crowell's Jodi Daniel, Brandon Ge, and Allison Kwon: CVSoci.al/Auo1XWO-

On May 16, the U.S. Senate Committee on the Judiciary, Subcommittee on Privacy, Technology, and the Law held a hearing titled “Oversight of A.I.: Rules for Artificial Intelligence.” Read more: CVSoci.al/03f1hQR5

Another #FTC enforcement action against a mobile health app. Ovulation Tracking App-Premom- Barred from Sharing Health Data for Advertising Under Proposed FTC Order

Summary of FDA guidance on Decentralized Clinical Trials by me and @caraet on the new @CrowellHealth blog... lnkd.in/ezhwkiGa #decentralizedclinicaltrials #dct #fda

ICYMI- Check out our PODCAST on the Trusted Exchange Framework and Common Agreement (#TEFCA) to learn about nationwide health information exchange efforts... with our hosts Joe Records and Payal Nanavati, and guests Erica Galvez, Nichole Sweeney and Jay… CVSoci.al/ZL7NeyYQ

ONC is moving forward with policies to promote nationwide health data sharing. Read more in our Crowel Health Solutions blog (by CHS Eunice Lalanne, and Arielle Carani) and check out our podcast (linked in the blog) to hear from Erica Galvez, Nichole… CVSoci.al/6woRO9ch

Wow! An incredible performance and great messages by @fatjoe @FrencHMonTanA @BustaRhymes @rickross305 on the importance of healthcare price transparency! Amazing event last night by @PowertoPatnts —bringing together policy makers, advocates and patients.

Great collaborating with Anne Li, Jurgen Figys and Wietse Vanpoucke to explore the mobile health applications landscape and the government regulatory response in the U.S. and the EU. Read more in @HCBizToday: CVSoci.al/EtbuTI5a

Crowell & Moring International is expanding its capabilities focused on global health systems innovation and health financing with a team of three senior health policy professionals. Looking forward to working with these great women! CVSoci.al/PpCAi3g6

Joe Records comments in @modrnhealthcr about the rise in fraud related to the Medicaid redeterminations process. Read more: CVSoci.al/Z5EEy0UW

Thanks to MobiHealthNews for covering my fireside chat at #HIMSS23 about the policy landscape for digital health and the impact of the COVID-19 pandemic. CVSoci.al/~AlIZFOE

Policy landscape for digital health changed 'overnight' after COVID-19 mobihealthnews.com/news/policy-la… #DigitalHealth