Results of the public consultation on the pelvic floor registry data collection

We asked for feedback relating to the pelvic floor data collection and asked participants to provide feedback on any concerns they may have or barriers they have identified.

6 participants classified themselves as a member of the public, 8 as a patient, 26 as an organisation and 7 participants classified themselves as another interested party. There may be an overlap between these groups, as some survey participants may be both a patient and a member of the public. 

78% of participants selected the following reasons for taking part in the consultation

• frequency of collecting the data items
• risks and challenges to implementing the data collection
• secure transfer of the data items to NHS Digital
• data collection

29% of participants answered yes when asked if there were any data items they would like to see modified, with 42% answering no.

Most of those who answered yes, asked if the collection could start further back than 2017.

Participants were then asked if there were any data items they felt were missing. 31% answered yes with the majority mentioning the inclusion of SNOMED CT and PROMS. 

33% of participants said no they did not have any concerns about the collection and the reporting of any proposed data items.

49% said they did have concerns about the collection and the reporting of any proposed data items for the following reasons

• poor procedure coding
• clinicians being too busy to input data
• all device data should be collected even that before 2017

13% of respondents said they also had additional concerns which were not included in the survey and several participants felt that more data items should be required and should not be optional.

44% of were not sure if they had any concerns relating to the proposed submission methods.

18% of respondents said they had additional concerns, around the capacity within hospitals to submit data and the duplication of effort with the British Society of Urogynaecology (BSUG) collection.

Data to be collected

Currently, health care providers submit retrospective data from 1 July 2017 and there is a plan to carry out an audit for pelvic floor devices back to 2010. We are considering how this would be implemented

All secondary care NHS organisations undertaking pelvic floor procedures are responsible for submitting the data to the information system. Our data liaison team are working with other health care providers to review the best approach, overcome issues and share best practice.  

We are also working to develop national standards to ensure health care providers and their system suppliers are able to submit the data with minimum burden to staff.

Data and frequency of data submission  

Clinicians already directly submit data to the BSUG for their own gynaecology patients and procedures. Although we acknowledge this may appear to be a duplication of effort.  The aim is that all the data will flow into a centralised system and registries will be able to access the data through DARS.  

The pelvic floor procedures which are in-scope are wider than those currently collected in BSUG and there is a legal basis for the data to flow directly into the centralised database.

Risks and challenges to implementing the data collection

We are also working to review separately to review how this data could be collected through PROMS and through a revised information system.

We are working closely with stakeholders including the British Association of Urological Surgeons (BAUS), the Royal College of Obstetrics and Gynaecologists (RCOG) and the Sling Mesh group.

We recognise the need to include SNOMED CT codes within the collection. The current list of in-scope Pelvic Organ Prolapse (POP) and Stress Urinary Incontinence (SUI) procedures, maps operation descriptions that have been identified by clinicians to the Office of Population Censuses and Surveys (OPCS) Classification of Interventions and Procedures (OPCS-4).

The data collection requires procedures to be submitted as stated by the clinician (as agreed as part of the world health organisation (WHO) Surgical Safety Checklist) i.e. from the theatre system as a description or SNOMED CT.