Pelvic Floor Registry Implementation Group minutes: October 2021

Items and actions

Spotlight and commentary

Purpose of the group is to oversee rollout and evaluation and to subsequently look at the formal rollout through the NHS.

The remit of the group is to support the development of an information toolkit for participants in the pilot, as well as other health boards.

Next meeting: 03 November 2021 10:30 – 12:00.

Contacts 

Sara Davies
Chris Hemming
David Bishop
Cory Sherazee

Patient representation

Highlighted concerns from Scottish mesh survivors group that lack of trust exists, especially around quality of data and there is a desire for patients to review and check personal data.

Data will be checked against records as far as possible and this group is more than willing to discuss with others affected by mesh.

Acknowledged that there are certainly questions to be asked around data flow but no straight forward answers at this stage to whether people will be able to check every piece of data about them.

Patient involvement will be key in solving these questions.

UDI programme

Coordinates work on UDI in Scotland via the UDI taskforce. The focus is on improving data quality – track to transform – and to understand what we would need to do this.

The multi-layer programme will include a Scottish central repository project, an active programme for patient involvement through Glasgow Centre for inclusive living and others, and working to consider other registries and how we can support them.

NHS Digital update on the Pelvic Floor Registry

Clinical coding document published 2 days ago within Scotland.

The document will be shared with the sub-mesh registry clinical group for consideration as they have indicated they would like to adjust the in scope procedure/coding list that NHS Digital has published previously.

Information Governance update

Conversations are ongoing with NHS D who are working on SSP to cover all devolved administrations and are preparing for circulation to this group.

Sharing in spirit of partnership and transparency with regulators.

Mapping systems and clinical coding

Been live since April this year, has 46 commissioned sites who will perform majority of ops and will engage with secondary care sites in time.

Highlighted the lack of data quality at the moment, partially due to sites’ local business processes not adequately in place.

NHS D are trying to input system standardised data as several fields are not able to be captured in electronic fields and desire from users to have ability to have bulk upload rather than require web forms for some data – aiming to be done in England in November 2021.

Summary and actions

Assurance for coding needs complete – general process used across Scotland rather than only local sites – require eHealth reps, coders and clinicians.

No changes within any pilot sites.

Information standard from NHSD once approved might aid data upload in Devolved Administrations.

Great work on IG which is progressing.

UDI programme paper submitted to H &SC management board.

Next meetings:

• November 3rd
• December 1st

Actions:

• action 6.1: circulate list of codes. Danish Mahmood/Cory Sherazee
• action 12.1: consider report format and content which could be distributed to Independent Sector providers – NHS Grampian Nominees
• action 14.1: share data mapping slides – Cory Sherazee