Whilst the responses were largely supportive, some concerns were raised. Whilst none were identified as significant barriers to commencing the ADAPt pilot activity, they must be acknowledged and consideration given to them in later phases of the programme. The concerns have been grouped into themes below.
1. Differences in terminology and coding
There have been historical differences between terminology and coding used between NHS and private providers. These are now largely aligned; with all providers submitting data to PHIN as OCDS. The NHS is transitioning to SNOMED CT. There are differing approaches to resolving any remaining coding issues (e.g. supporting adoption with mapping as an interim). The ADAPt programme will take into consideration coding for pilot activity and subsequent recommendations, with support identified where required.
2. Governance and data sharing
Some concern over IG and data sharing were raised by respondents. Both PHIN and NHSD operate under strict legal basis and data sharing agreements. Directions, DPIA and DPN will be in place for any changes to data collections or data sharing between the organisations. The consultation noted that for pilot activity data sharing would be between providers involved in the pilots, PHIN and NHSD only.
3. Attribution of NHS records to NHS consultants
PHIN data collections are reported at hospital and consultant level, whilst the majority of NHS collections are at Trust level only. This is principally due to the differences in how care is delivered between private and NHS healthcare; however comparability of data between the two sectors would require improved recording and granularity within NHS data collections.
4. Need to retain ability of consultants to validate their own data
Linked to 3 above; whereas NHS data collections are validated and signed off at Trust level (albeit often with preceding validation at a service level), PHIN data is additionally validated at consultant level. The ability to maintain consultant level validation in future data collections is recognised and will need to be carefully considered for activity beyond pilot phases of the ADAPt programme.
5. NHS numbers and overseas patients
Aligning data collections between NHSD and PHIN effectively would require common identifiers for patients. Within England (and Wales) this is the NHS Number, and is available for use by private providers. The difficulty comes for overseas patients in the private sector who would not currently be given an NHS number. NHS patients can simply opt out of aspects of data sharing, an approach which was available for non-English residents is required.
6. Cost and Burden – implementation, access to NHS IT and training
It is recognised by the ADAPt programme that there may be an impact on cost and burden to providers both in delivering the pilots and subsequent recommendations. The programme has stated, and intends, to undertake pilot activities with those who currently have capabilities in place to submit data to NHSD. Burden will be minimised by the programme recommendations, and support and guidance for any subsequent implementation and access to NHS IT infrastructure provided. It is noted that during the response to COVID-19 many private providers submitted data to SUS, either through securing HSCN connectivity, or through XML middleware providers.
7. UK wide data collection
PHIN under the CMA Order have a legal basis for UK wide data collection. The NHS in the UK is devolved; NHSD remit is England only, although under direction for the Devolved Administrations may collect data on their behalf (an approach which has been utilised during the response to COVID-19). It is noted that the pilot activity will be England only.