Final paper after a wonderful & frustrating career in #healthdata.
Thanks to #MELODY colleagues & all 21,575 participants!
The UK could be a powerhouse for #raredisease research if @nhsengland.bsky.social wasn't so stultifying & the Tory government hadn't "reorganised" #NHS data sources to death.
Thanks to #MELODY colleagues & all 21,575 participants!
The UK could be a powerhouse for #raredisease research if @nhsengland.bsky.social wasn't so stultifying & the Tory government hadn't "reorganised" #NHS data sources to death.
Comments
Algorithm development is the only realistic way to build population based data for some rare diseases. It takes collaboration with clinicians and academics and the ability to link datasets. Underfunding, unclear & expensive data access pathways, paralysed decision making makes this difficult.