Wednesday, 29 December 2021

Impact of Open-Access De-identified case records

While current efforts are towards adoption and interoperability to enable patient data access 24*7 globally as longitudinal record for their life journey, there isn't any technologically feasible and safe way but only debates and tiny projects around open access de-identified data which someday may get utilized at the global scale (even useful if scale is not so huge). The low hanging fruit may be firstly enabling the access to all research papers globally, or all data of clinical trials for better critical appraisal or atleast reporting of outcomes of all trials including those with negative outcomes. The most urgent goal is surely global equitable access of covid vaccines. The paragraph below is taken from project working on a real world scenario to alleviate human suffering with help of open access de-identified data, not in healthcare directly neither global scale but still surely useful. 


"In almost every state, courts can jail people who fail to pay fines, fees, and other court debts—even those resulting from traffic or other non-criminal violations. While imprisoning someone for failing to pay a debt remains illegal on paper, these aggressive debt-enforcement tactics have led to the de facto reemergence of debtors’ prisons. Many believe that thousands of people across the country are jailed each year for unpaid fines and fees, but a dearth of data has made it difficult to rigorously assess and curb modern-day debt imprisonment practices. To address this data gap, we’re compiling an extensive database documenting debt imprisonment. Ultimately, we will anonymize the data and publish them for researchers, civil rights advocates, law enforcement officers, and other criminal justice stakeholders." 

ref - https://law.stanford.edu/event/stanford-computational-policy-lab-debtors-prisons-project/ 

Debtor's Prison - https://en.wikipedia.org/wiki/Debtors%27_prison



Hopefully someday open access de-identified health data will help others to get freedom from the disease prison.

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