Thread by @process_x

In case you weren't aware that the purpose of the electronic health record (EHR) is to leverage patient data for research, check out what the NAM has to say about the learning health model in “Digital Infrastructure for the Learning Health System."🧵

nap.edu/catalog/12912/…

"The ability to draw broadly from anywhere across the globe to provide relevant insights for health and healthcare improvement is a long-term goal for the learning health system."

"Meanwhile, the ability to learn from the experiences of other countries and to apply health information technology (HIT) for biosurveillance can actively facilitate progress toward this and other goals."

Note: It's unclear what these "other goals" are.

"Discussions noted the need to focus strategic thinking around the functionalities desired by such a system, including the ability to produce a complete longitudinal patient record at the point of care and the ability to use records for research purposes."

The above excerpts are from Section 8 of the IOM/NAM's workshop summary titled “Fostering the Global Dimension of the Health Data Trust,” and Section 9 titled "Growing the Digital Health Infrastructure."

Some research is taking place without the knowledge or consent of patients and we know historically, pain patients do not have "shared decision-making rights" when it comes to rapid forced tapers AND outcomes tracking is non-existent. Effectively, rationed out of the system...

... Utilizing algorithms like those seen in CDS Connect and NarxCare. The "learning health system" almost appears to be part of implementing an interoperable global surveillance apparatus. And comparative effectiveness research (CER) is not always used for good.

In fact, it appears CER is used for rationing in some cases by refusing to study politically inconvenient modalities for treating pain, such as opioid analgesics. We also know patients on long-term opioid therapy (LTOT) are finding it difficult to retain even basic primary care.

This creates a perverse system based on social credit that rations out the most inconvenient healthcare utilizers. CER and the politicization of medical treatments affect the accessibility of treatment modalities ...

https://twitter.com/NitaGhei/status/1359851445105917962

... and allow the inauguration of lower to no evidence modalities as "best practices" without ever researching modalities patients say work better for them (e.g., medication). It's past time we addressed research at the bedside w/out consent, #privacy, and the regulation of #AI.

@threadreaderapp unroll, please.