Update on the NHS Constitution and use of data for research

Her Majesty’s government have released a short report into the recent consultation on the proposed changes to “strengthen” the NHS Constitution. My concern (see previous blog here) arose from the “no top-down reorganisation” of the Health Service; whether one likes it or not, it looks like private sector care providers are coming into the NHS fold. Will the Constitution require these providers to make their anonymised patient data available for research for the common good, or will it be their private property to sell and share as they see fit for commercial gain? Time will tell – but it at least doesn’t look all bad. The report says:

58. Respondents identified several specific areas where the proposed changes to the NHS
Constitution could be made clearer. These include:
• that data are shared with and across organisations to facilitate joined-up care;
• how identifiable data are used for non-clinical and research purposes;
• how data are shared with colleagues outside the NHS and with private companies;
• more detail about whether ‘all’ or ‘appropriate’ staff will have access to an
individual’s data and how data will be shared with non-NHS colleagues;
• definition of terms such as ‘anonymise’ and ‘relevant professionals’;
• clarification that only the data that are necessary for the other ‘relevant
professionals’ purpose will be released;
• access to electronic data; and
• what the difference is between information and data.

I’m really pleased that this message got across, hopefully not just from me as a stats crank but from others concerned that we use our data to make the world a better place. But the devil will be in the detail. I am writing an extended blog entry on this for Radical Statistics in the next week or so.

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