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US need not rely on hospitals emailing #COVID19 data or internet connected thermometers to get timely, accurate, and reliable data about the nation’s health
We need a new National Information Spine
Thread on our @JAMA_current paper w/ @deansittig 1/
https://jamanetwork.com/journals/jama/fullarticle/2766368
We need a new National Information Spine
Thread on our @JAMA_current paper w/ @deansittig 1/
https://jamanetwork.com/journals/jama/fullarticle/2766368
A national health IT spine would be a virtual backbone to provide critical up-to-date patient health information to make sound decisions in times like the COVID pandemic and other public health emergencies 2/
Real-time, technology-driven, surveillance & reporting spine can tell us: how many affected by COVID-19 in given geographic area; their age/race; how many sought care/were hospitalized; & how many required ICU, ventilator, or died. See Germany data 3/ https://twitter.com/HardeepSinghMD/status/1248997786777006090?s=20
US technologically advanced and spends most money on health care but the White House Task Force requested hospitals to email some of this basic information recently
4/ https://www.gnyha.org/news/federal-request-for-covid-19-data/
4/ https://www.gnyha.org/news/federal-request-for-covid-19-data/
In March, several proxies of the data were being used. In addition to Kinsa thermometer to trend “fever levels” we relied on influenza like illness. A national health IT spine could provide more accurate data 5/ https://twitter.com/JeremyKonyndyk/status/1240663797603459072?s=20
Plus many outstanding volunteer efforts help gather useful information that US should be collecting nationally shows why this national IT spine is needed. Best known is @COVID19Tracking 6/
State of gathering data at a national level should prompt questions about the basic notions, norms, and assumptions that have long governed health and health care of the US population. 7/
Key information needed by White House Task Force only possible through widespread data collection, aggregation, & analysis. This comes with a price in terms of tradeoffs to make significant changes to existing health IT and legal infrastructure to gather and analyze data. 8/
Most changes technically possible, but currently illegal or socially unacceptable. Will COVID-19 change current expectations for privacy, confidentiality, open markets, continuous monitoring of locations and activities, and strategic but focused government intervention? 9/
2001 vision to design the National Health Information Infrastructure, a comprehensive, knowledge-based system capable of providing critical information to make sound decisions in emergency situations failed but must be revisited. 10/ https://aspe.hhs.gov/report/information-health-strategy-building-national-health-information-infrastructure
A national health IT infrastructure would have tremendous benefits – atleast 5 we identified - incl. assisting national public health surveillance efforts advocated by Mark McClellan @ScottGottliebMD @Farzad_MD @cmyeaton @LaurenRSilvis 11/ https://twitter.com/deansittig/status/1262448389289054209?s=20
Regulations can be modified and exceptions made for data gathering during extraordinary times. But privacy, legal, and ethical trade-offs not easy and warrant further consideration to maintain adequate trust. Check out piece @MichelleM_Mello 12/ https://twitter.com/EricTopol/status/1259902403022741504?s=20
As balance, most intrusive spine functions could be limited to public health emergencies. Governance overseen by a bipartisan public-private consortium that includes experts representing wide-ranging technical, legal, social, political, and ethical points of view 13/
By maximizing benefits of scarce resources, treating everyone equally, and prioritizing efforts to save lives while maintaining trust and confidentiality, such a national health IT infrastructure could meet the highest ethical standards. 14/
US should no longer rely on outdated laws, social norms, or potentially inaccurate modalities to obtain timely, accurate, and reliable health information essential to save lives. Time to make some difficult decisions - if not now then when? End/
