Scientific Director, #MEAction Affiliations: Stanford Genome, Université de Montréal TIME100 Health #ME, #EDS, #POTS, #LongCOVID Views my own
![[200.202, 200.205, 200.432, 200.461] The proposed rule seeks to invert the regulatory framework of American science from bottom-up to top-down. By adding copious bureaucratic red tape, the regulation as proposed would restrict scientists from traveling to attend conferences, adapting their research to respond to new scientific developments, or publishing their results in journals in a timely manner. Worse yet, the regulation imposes vague criteria for scientists to follow in selecting research topics, including alignment with presidential priorities and adherence to "gold standard science," neither of which have been thoroughly defined (EO 14303 provides general gold standard guidelines, but how those should be interpreted in the context of specific grants remains unclear). This empowers federal bureaucrats to make arbitrary decisions to rescind grants based purely on political appearances, and not the quality or even content of the science. This could force scientists to wait for presidential proclamations before pursuing new areas of research; one can all too easily imagine a future political appointee rejecting a novel treatment approach for a disease because that neither the disease nor the treatment method have yet been formally declared a priority by the White House. Although not an intended effect of the policy, such a scenario is nonetheless the inevitable outcome of excessive bureaucracy.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:fxzd5277so73zk3uxvlpzrg6/bafkreiajibprb4z4eaqfqczy5uepyvilpcrvk2qh5ldycehsqofxujdipy)
![This is a diagram labeled for health equity researchers writing NIH grants. Here's how to describe SDOH without getting flagged. Then on the next column it says Tiarney D. Richwood PhD researcher mentor translational innovation strategist. There are three columns. The first one says population focus, the second one says study focus, and the last one says use more specific language like...
The first column says "Patients/Individual".
The study focus should be access, uptake, adherence. Use language like non-clinical barriers affecting [specific outcome], such as [list specific drivers relevant to grant.]
Families or caregivers: study-focus is caregiving load. Use more specific language, like "Caregiving demands shaping [specific outcome], such as [list specific influences relevant to the grant]."
Population is communities, place-based. Study focus is exposure, prevention, burden. Use more specific language like community level factors affecting [exposure to specific outcome], including [list specifics].
Communities, place-based where the focus is resource availability.
Place-based factors limiting access to [specific resource] such as [list specifics relevant to grant].
Health systems: referral, scheduling, and care workflow.
Care delivery processes affecting referral in specific settings such as [list specifics relevant to the grant].
Organizations or institutions; study focus is rules, procedures, and pathways. Institutional practices shaping care pathways such as [list specific issues, rules, procedures, or pathways].
And last one is implementation studies, focus on change and scalability.
Use more specific language like: "Modifiable factors affecting implementation of [X behavior] in [Y setting], such as [list specific factors].](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:fxzd5277so73zk3uxvlpzrg6/bafkreia2ikotp5kt5xnpicl3dd5nrsnzjgj7bk6jhj24bpkteiegzrl6e4)
Scientific Director, #MEAction Affiliations: Stanford Genome, Université de Montréal TIME100 Health #ME, #EDS, #POTS, #LongCOVID Views my own