I have just finished the best practice paper and, as clinical lead for the project, have a few points regarding the data required by the renal registry. I would welcome other's thoughts/guidance.
1. Is there a need for a data sharing agreement for this data? The request is for large amounts of personal data delivered on an open ended basis for reasons that are not clearly defined. Are names and addresses & full postcodes really needed? I am concerned that labs will start to deliver this data without the appropriate information governance being considered. This data is also sensitive at an organisational level.
2. The second data gather I cannot quite understand. Are we being asked to filter out patients who had an alert 15 months previously? If so why can't this be done centrally?
3. Whilst I have few issues with the safety alert to produce rapid progress in an area where there is clinical evidence of a safety issue, is it usual to use a national patient safety alert to mandate data provision at a national level for an NHS England AKI Programme? Particularly when the use of this data is as poorly defined as 'national monitoring purposes?'.
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