4 ms·
The biggest Obama spend was to create a research cohort (https://allofus.nih.gov/ https://allofus.nih.gov/). So far, it hasn't paid dividends in an appreciable
by biomcgary 2y ago
The biggest Obama spend was to create a research cohort (https://allofus.nih.gov/ https://allofus.nih.gov/). So far, it hasn't paid dividends in an appreciable way, but the UK Biobank (on which the US program is partially modeled) started in 2006 and is now contributing immensely to the development of medicine.
The US program has the potential to be even more valuable if managed well, but I haven't seen overwhelming indications of reaching that potential yet; however, I think a few more years are needed for a clear evaluation.
- carbocation 2y agoSadly the All of Us program (of which I am a research subject [and researcher]) hasn't done any sort of imaging or ECG. They did draw blood, so that allowed for genome sequencing. That may also, in principle, allow for assaying new biomarkers (I don't believe anything like that has been funded though).
- westurner 2y ago2009-2010 Meaningful Use criteria required physicians to implement electronic care records. There's now FHIR for sharing records between different vendors' EHR systems. There's a JSONLD representation of FHIR. Which health and exercise apps can generate FHIR for self-reporting? Can participants forward their other EHR/EMR records to the All of Us program? Can participants or Red Cross or other blood donation services forward collected vitals and sample screening data to the All of Us program?
- carbocation 2y agoThe imaging reports are being imported, but not the images. The bigger issue is that clinical imaging is done due to medical indications. Medical indications dramatically confound the results. A key element of the UK Biobank's value is that imaging and ECG are being done without any clinical indication.
- westurner 2y agoSo they need more data from healthy patients when they're healthy in order to determine what's anomalous? SIEM tools do anomaly detection with lots of textual log data and sensor data. What would a Cost-effectiveness analysis say about collecting data from healthy patients: https://en.wikipedia.org/wiki/Cost-effectiveness_analysis https://en.wikipedia.org/wiki/Cost-effectiveness_analysis TIL the ROC curve applies to medical tests.
- biomcgary 2y agoThanks for the insight! I have used UKB data extensively, but haven't seen much from All of US, so I was wondering if I had missed something. . .
- carbocation 2y agoAll of Us is great for disease labels and for genetic validation (and discovery). I like it a lot. I just have... ideas for how they could make it more valuable. Ideas that I stole from Rory Collins. https://www.ukbiobank.ac.uk/media/gnkeyh2q/study-rationale.pdf https://www.ukbiobank.ac.uk/media/gnkeyh2q/study-rationale.p...
- inciampati 2y agoThis program is incredibly difficult to get access to and has been monopolized by a few elite institutions whose name recognition potential seems to have blinded funders. These institutions basically control everything about the cohort, but they're not innovating well with the data that's available and I haven't seen much of anything interesting coming out of the investment. This is in stark contrast to the UK Biobank which has access control but is relatively egalitarian in access. It's been producing major results since just a few years after it's inception, and continues to.
- carbocation 2y agoAre you thinking of the Million Veteran Program? All of Us is readily accessible to most US institutions and is rolling out a plan to expand access.