Who knew that both our country's organ donation system AND our health data exchange networks needed more transparency to stop corruption? The Health Tech Talk Show's special guests Jennifer Blumenthal and Jennifer Erickson did. And perhaps in addition to live documenting Lisa B.'s journey through menopause when that great time will come, we will also live document my mammogram. You are welcome in advance, loyal followers. Jennifer Erickson, senior fellow at the Federation of American Scientists, pretty much blew our minds about the US organ donation system. 17 people die each day waiting for an organ, but worse, we recover on one out of every five organ donors across the country. On top of that, the organ procurement organizations, controlled by the national monopoly, UNOS, are 15x more likely to lose an organ in transit than an airline is to lose your luggage. Listen to the show for more jaw dropping stats, but the good news is that Jennifer and a strong coalition have, after more than 8 years of fighting, have reached a major milestone--an RFP for Health Resources and Services Administration (HRSAgov), HHS's Organ Procurement and Transplantation Network has just been released, and incumbents will have to compete against innovators in a competitive and transparent process. What can you do to help? See the RFP links in comments and if you're a hot shit tech company that knows how to do stuff, please respond to the RFP! If you're a regular person, WRITE TO YOUR CONGRESSPEOPLE! Everyone's favorite and fiercest advocate Jennifer Blumenthal, co-founder of OneRecord (a part of Milliman), joined us to talk about problems with patient access to health data. Despite the big talk about patient access, neither the national networks nor organizations participating in TEFCA are required to respond to IAS requests. Well, that's dumb. Jenny thinks we might see the states and their HIEs get to patient access before the national networks and #TEFCA. You know what Lisa and I always say: GOD BLESS THE STATES. What is Jenny excited about with the states? They're standing up FHIR APIs and investing in their data infrastructure, and hey, it's not so hard to maintain 50 - 70 APIs. And dear national networks and those overseeing TEFCA - you can fix IAS if you listen to Jenny. Is this a policy problem or a technology problem? Kind of neither. What can we individually do to improve patient access? Everybody go through remote identity proofing events and tell Jenny if you made it through! What else? No, #telehealth is not dead. Yes, Change Healthcare screwed up. Zorya Foundation will be providing its first full-year childcare grants to moms working in clinical roles. Listen to Shannon Sartin West's new Datavant sponsored podcast "Longitudinal." Check out the comments from yesterday's LinkedIn live for Brendan Keeler's thoughts on making TEFCA more transparent and thus, effective. https://lnkd.in/eeP4yYEu
Health Tech Talk Show 5/3/2024
https://vimeo.com/
Therasa Bell
2mo
I really appreciate this post and the hard fight Jennifer Blumenthal has pushed on for the consumer! I believe we can't let go of two critical fights right now - fulfilling treatment by seeing every provider connected and right behind it, individual access. This will solve our major challenges in healthcare. Recently, I have sat through multiple conversations where folks (my peers) believe the provider treatment problem has been solved because we have connected health systems and the top 8 or so EHRs to the national networks. Well, this covers about 25% of actual healthcare providers if we actually recognize where healthcare in a broad definition is delivered every day. We have roughly 75% of the healthcare provider ecosystem yet to be connected. If these providers are not connected, how can we even begin to fulfill the individual access need? An individual deserves access to their COMPLETE record. Let's not lose sight of these two parts of the equation. They are the only variables left that solve the picture. The rest of solve itself after. Love the complete view you bring to these topics. Thank you for your hard work Kat McDavitt!
Find the Health Resources and Services Administration (HRSAgov), HHS RFPs for OPTN modernization here: https://www.hrsa.gov/optn-modernization
Super fired up about the organ donation system? Read about how Jennifer Erickson altered her will in this op-ed from the The Washington Post: https://www.washingtonpost.com/opinions/i-want-a-journalist-to-see-what-happens-to-my-organs-after-i-die-heres-why/2019/10/04/42c5e888-e529-11e9-a331-2df12d56a80b_story.html
Hear Jennifer Erickson's most recent NPR interview on the organ donation system here: https://www.npr.org/2024/04/13/1244583164/patients-die-every-day-waiting-for-organ-transplants-the-problem-isnt-a-lack-of-
How does patient access (IAS) work under TEFCA? See the phrase "optionally allowed" in this Office of the National Coordinator for Health Information Technology (ONC) overview: https://www.healthit.gov/topic/interoperability/policy/trusted-exchange-framework-and-common-agreement-tefca
Lisa B.
2mo
Two Jennifers, two brilliant advocates and experts!
Very important topics, thanks for featuring!
Fantastic update, Kat. 👏
Want to be a guest on the show? Become friends with Melissa Denino, our boss.
President of Innsena; CEO of the Zorya Foundation; Host of the Health Tech Talk Show
2moFollow a strong comment game from the live show here: https://www.linkedin.com/feed/update/urn:li:activity:7190801621906284544