Summer reading: Data for Research and Statistics in 2017

We’ve previously published an overview entitled “Governance of a Digital Economy in the medium term: AI, blockchain, genomics, and beyond” and a detailed answer to three questions we get asked. We now add this fourth on current questions around research and statistics (and NHS England).

Those questions are:

  1. Should the UK sequence the full genome of the entire population? (pg 1) (no)
  2. Can there be innovative, speculative analysis of individual-level sensitive data in a way that is Consensual, Safe, and Transparent? (pg 2) (yes)
  3. Is there a need for “AI exceptionalism” in data handling and administrative data? (pg 3) (no)
  4. Implications for research and statistics on extending Secondary Uses to facilitate third party time-sensitive micromanagement of Direct Care.

Also related, is the medConfidential response to the Code of Practice on Statistics consultation from the UK Statistics Authority.

Care Episode Histories: There will be a new dataset that replaces HES. The question is where that dataset will be copied, who will access it and on what terms, and whether dissent will be honoured for secondary uses.

The Government’s response to Caldicott 3 has made very clear: Patients will know about every access to their records, whether for direct care or secondary uses.

NHS England’s non-clinical staff look at it purely in terms of data protection; what about the medical profession’s obligation to confidentiality?

For PHE/CPRD, there remain copying loopholes that may remain in theory, and it’s unclear whether they wish their activities to be consensual, safe, or transparent.

The NHS has said that it will use digital tools to tell individuals how data about them is used, and have a public register of data sharing – both are necessary for trustworthiness. Whereas the Government still hasn’t committed to a Register of where it copies any data, including your medical information, under the Digital Economy Act; let alone mandating that its many digital services tell you how your data gets used.

Given the GDS/DCMS claims of digital leadership, being this far behind the NHS has got to get embarrassing. Given Government manifesto commitments, and the unknown hopes of a “Digital Charter”, we’ll see if anything is implemented