Orthopaedic Registries in the UK: Collaboration, Empowerment, and Quality Outcomes

1. T&ORegistries John Timperley     FRCS (Ed)  DPhil (Oxon)

2. UK Orthopaedic Registers Existing: • National Joint Register (NJR) • Hip arthroplasty • Knee arthroplasty • Shoulder/elbow arthroplasty • National Hip Fracture Database (NHFD) • Trauma Audit and Research Network (TARN) • Non Arthroplasty Hip Register (NAHR) • British Spine Register (BASS) • Knee ligament Register (BASK) • Paediatric Register (BSCOS) • Hand surgery (BSSH Audit Website) • Foot and Ankle surgery index • Trauma Register (OTS) In planning • ?Knee osteotomy Register (BASK) • ?Soft tissue shoulder register • ?Computer assisted surgery (CAOS)

3. Orthopaedic Registries in UK • It could become the normal culture that all orthopaedic procedures are automatically entered onto a Registry • There must be collaboration between Registries • They can be a vehicle for multi-centre RCTs • The BOA can co-ordinate between Specialist Societies and Registries

4. Registry UmbellaWhere are we?: Two meetings of Specialist Societies: Chateau Imnpney (Droitwich) 23/10/2012 London 4/7/2013 Two UK Emerging Orthopaedic Registry Sessions Manchester 2012 Birmingham 2013 Proposed a BOA Umbrella organisation: BOA Exec BOA Council Board of Specialist Societies

5. Scoping Registry Umbrella • Facilitates National Representation of Profession in strength • EMPOWERMENT of the Profession Issues in common • Consent/Caldicott issues • Governance • Policies (e.g.data access) • Database structure and duplication of data • Functionality • Validation of data • Interpretation and release of data Opportunities • Strategic planning • Develop initiatives to improve compliance • Through CGRs, NICE, Revalidation, • Integration with care.data initiative (upload to HSCIC) • Collaboration with PHIN

6. Scoping Registry Umbrella Existing models: NJR NHFD TARN

7. Managed by HQIP Governance – NJR Steering Committee Finance – levy on implants

8. NHFD funding comes from HQIP (NHS England), administered by the RCPCEEU. Governance is determined by the RCP in line with their HQIP contract

9. Funded by contributing hospitals. Non-for-profit. Supports staff at Manchester University (Hope Hospital) “Advised by CQC”

10. Scoping Registry Umbrella Explore relationship with: HQIP RCS Eng. Clinical Effectiveness Unit PHIN etc.

11. Role of HQIP: • National Clinical Audits inc. Patient Outcome Programmes • Quality Accounts Reports from all Health Providers • NCA Quality Assessment

12. Various roles in national audits: Lead Unit (Manages and holds Contract) Subcontracts work Analyses data

13. Typically three bodies for each Registry: Project Team Clinicians, methodologist, Managers Clinical Reference Group All stakeholders Project Board Holds and oversees delivery of Contract

14. HES to CES

15. 2014 Report: - Requires PMIs to inform patients that they will be able to obtain quality information on consultants and hospitals from the website of the insuring organisation. - Information about hospitals and consultants will be addressed via a single remedy: PHIN (Private Healthcare Information Network) - PHIN will be expanded and made more independent in terms of governance and funding. It will be jointly funded by private hospital operators and PMIs - PHIN will become the main resource for clinical outcomes and quality and the information will have to be in a prescribed content and format

16. Collaboration Funding?

17. Scope: • Individual Registries. Define and record: • Governance structures • Functionality • Database structure • Coding (ICD, OPCS) • Mechanisms for validation of data • Policies regarding • data requests • access for research • Interpretation and release of data • Funding streams • Structure and function of BOA Umbrella organisation • Structure of the organisation • Define Default Registry Model including governance and general policies • Discussion with FOI office • Define Umbrella database structure and function • Interface with Registries (e.g. Amplitude integrated architecture) • Data sharing • co-ordinate collaborations • co-ordinate national studies – funding/support • Promotion of data collection culture (JTO, Congress) • Contact with NHSE and lobbying • Data governance/Caldicott issues • Outlier status identification and management (HQUIP process gudelines) • Compliance levers • Use of CRGs, NICE, Revalidation, PBR • Collaborations • HQIP • PHIN • care.data initiative (share data with HSCIC) • ISAR (ISOR) • Umbrella Funding streams

18. Proposal:BOA Quality Orthopaedic Outcomes Committee (QOC) Chair BOA Exec. Member – Colin Howie – President Elect BOA Manager – Julia Trusler Registry representatives from Specialist Societies (BHS, BASK, BASS, BSCOS, BOFAS, BESS, CAOS, OTS, BSSH) Patient representative By invitation: established Registries (NJR, TARN, NHFD) Software experts (e.g. Amplitude) HQIP

19. BOA Brighton 2014 Emerging Registries session - Agenda: Co-Chairs: John Timperley, Colin Howie. 1. Overview, Structure and function of BOA Umbrella organisation           John Timperley (10’) 2. The established Registry Models            NHFD – Rob Wakeman (10’), TARN – Maralyn Woodford (10’) NJR – Keith Tucker (10’) 3. Collaborations           HQIP (Yvonne Silove) (10’)           PHIN (Matt James, CEO) (10’)