British Children’s Orthopaedic Registries

BSCOS Annual Meeting Liverpool 2015

David Rowland

Good Medical Practice (2013)

“You must take steps to monitor and improve the quality of your work.”

“You must take part in systems of quality assurance and quality improvement to promote patient safety.”

13.

22.

Using Outcomes Information for Revalidation in Trauma And Orthopaedic Surgery (2013

revision)

• “Where there are identified national clinical audit(s) that cover your area(s) of practice, it is essential that you participate. This will be mandatory for revalidation.”

Unit Data• Redislocation rate after open reduction of DDH

<10%

• Need for surgery after Pavlik harness treatment <20%

• Need for surgery in non-syndromic cases of club foot treated <10% (excluding tenotomy or single tendon transfer)

• Need for reoperation after SUFE treatment, apart from removal of metalwork, <10%, and late reconstruction

BSCOS Registries

• Available to all members of BSCOS

• Funded by membership fee

• Information and documents at bscos.org.uk/registry

• Direct link: bscosregistry.org.uk

BSCOS Registries

• Primary aim to gather data for revalidation

• Data should also be available for research

• Single registry but separate pathways for each condition

Initial Launch

• Supracondylar Fracture of the Humerus

• Slipped Capital Femoral Epiphysis

• Ponseti Management of Clubfoot

Later Release

• Perthes' Disease

• Developmental Dysplasia of the Hip

• Proximal Femoral Osteotomy

Forerunners

• National Joint Registry

• British Spine Registry

• Non Arthroplasty Hip Register

• Sub division of Bluespier

• Professional company focussed on IT in healthcare

• Development team includes Orthopaedic surgeons

• Created British Spine Registry

Quality Outcomes Committee

• BOA Sub-committee since 2014

• Representatives from established and fledgling registries

• Guidance for registry development, data processing, outlier management etc.

• Aim to support but not control

Consent

• Discussed with ICO

• No formal mechanism for approval of consent forms

• Form follows

• Principle 1of the Data Protection Act - fair processing of data

• Schedule 2 & 3 of DPA - consent for storage of sensitive personal data

Patient Information

• Background behind registry

• Reassurance re safety & confidentiality

• Contact details

• Instructions for removal of data

Data Management

• Use of the Registry implies acceptance of BSCOS User Agreement and Data Policy

• BSCOS is data controller and is registered with ICO

• Amplitude is data processor

• Individuals need not register separately with ICO if simply entering data onto registry. Any other manipulation requires registration at ico.org.uk

Caldicott Guardians

• Oversee application of Caldicott Principles

• Registries need not have their own Caldicott Guardian

• Each Trust or Health Board will have a CG and that person should be approached before data are uploaded to a registry

• Caldicott Guardian pack on download page

Individual Reports

• Each surgeon able to create report for own practice without data request

• Customisable

• Compare to registry data or to standards from literature

• Useful for revalidation and appraisal

Outliers

• Any dataset will have outliers

• Management policy being discussed by BOA Quality Outcomes Committee

• Aim to keep anonymity where possible

• Individual reports will show that person if they are an outlier and facilitate discussion at appraisal

• Annual BSCOS reports will also identify outliers

Data Retrieval

• Each surgeon has access to own data

• No surgeon shall be able to view another surgeon’s data

• Requests may be made for anonymised data for specific area

Audit & Research

• Submit request form to registry@bscos.org.uk

• BSCOS will form a Sub-committee to review requests

• Any publication must credit the BSCOS Registry and must include a member of BSCOS as an author

• The sub-committee must be involved in any publication using comparative data from the Registry

Other Data Requests

• No public money involved so protected against Freedom of Information requests

• Registry can be classed as ‘developing’ for three years during which FOI not appropriate

• Any recipient of FOI request has a duty to be helpful

Registry Sub-Committee

• Chair from the BSCOS Board

• 3 additional members, initially from BSCOS board

• Lay member?

Summary

• 3 pathways released today

• 3 more to follow after further development

• Initial focus on data collection and refining pathways

• Provisional analysis for next BSCOS meeting