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Developing a National Audit
for Rheumatoid and Early
Inflammatory Arthritis


Ian Rowe
Chair Clinical Affairs Committee, BSR
Outline

• The British Society for Rheumatology
• Challenges in improving patient outcomes for RA in UK
• What is the BSR Biologics Register ?
• Approach to the HQIP National Audit in RA
• Opportunities
British Society for Rheumatology

                           •   Covers England, Wales, Scotland and Northern Ireland
       Membership
                           •   Members include consultant rheumatologists, trainees, allied
       organisation
                               health professionals and GPs
                           •   Closer working with British Health Professionals in
                               Rheumatology (BHPR)

      Guidelines and       •   Annual Conference over 2,000 clinicians
        Education          •   E learning pilot 2012
                           •   Rheumatology International Journal
                           •   HQIP national audit of RA 2012


                           •   Rheumatology conditions seen as outpatient activity rather than
       Challenges              ambulatory care and Long Terms Conditions
                           •   Large variation in how services are delivered
                           •   Little to inform service specifications



                           •   Biologics register managed by BSR , over 25,000 patients
  BSR Biologics Register
                           •   Ankylosing Spondylitis register commenced 2012
Defining Rheumatology

 A multidisciplinary branch of medicine that deals with the investigation,
    diagnosis and management of patients with arthritis and other
    musculoskeletal conditions. This incorporates over 200 disorders affecting
    joints, bones, muscles and soft tissues, including inflammatory arthritis and
    other systemic autoimmune disorders, vasculitis, soft tissue conditions,
    spinal pain and metabolic bone disease. A significant number of
    musculoskeletal conditions also affect other organ systems.

 Rheumatology is in the midst of a period of exponential growth in knowledge of
   the mechanisms of rheumatologic and auto-immune disease, knowledge
   which is transforming and advancing our treatment options.

 There is untapped potential for Quality improvement through addressing
    variation in treatment and care; Innovation through implementing best
    practice; Prevention of unnecessary disability and improvements in
    Productivity.

   British Society for Rheumatology Dec 2011.
RA-Variation in Quality and Outcomes
  Innovation and Productivity: Early effective treatment needed; RA/IA represent a major health problem; 1
      million people (England); cost £8 billion annually (UK); delays in treatment can result in a more
      aggressive disease; earlier treatment may produce cost savings.


  Quality Improvement: Major Variations in Care
        National: Different levels of Care and variation in services
           i) There is existing wide variation in treatment and outcomes; e.g. only 10% of patients are put onto
           DMARDs within 3 months of symptom onset in spite of NICE guidelines.
           ii) Only 63% of patients in acute trusts provided annual review for RA patients to monitor disease
           progression and emergence of co-morbidities (NAO, 2009; NICE, 2009)


         International : Poorer Access: Biologic Treatment and Waiting times

                 Europe                   unsuccessful                   Disease activity Score 3.2 (mild                Spain waits 2 weeks from referral,
                                          treatment with a               disease)                                        maximum Germany 12 weeks
                                          single DMARD
                 U.K.                     unsuccessful                   Disease activity Score 5.1                      U.K. standard set 3 months from
                                          treatment with TWO             (severe disease)                                symptom onset, not met
                                          DMARD
                 Meeting                  Marks in the LSE               England was given a 4/10 – the                  higher marks were awarded to
                 European                 report in 2012                 lowest mark in joint placing with               Germany (8/10) and Sweden (9/10).
                 guidelines                                              Poland and Slovenia




Source: A Common Disease with Uncommon Treatment ,European Guideline Variations and , Access to Innovative Therapies for Rheumatoid Arthritis LSE June 2102
BSR Biologics Register RA
  Largest European biologics register for patients with RA
• Established 2001
• Monitoring long term safety profile
• Now >25,000 patients
• Cohorts of patients recruited
• Six different biologic drugs
• Research database: infection risk; comparison between drugs
• Established as part of NICE approval for biologics
• Funded by pharmaceutical companies
• Paper moving to electronic data capture
Potential for other opportunities and use; potential
for links to other research databases e.g. CPRD; INBANK


         Policy makers/
          Regulators              Patients



      Pharma       Biologics      Researchers
                   Register
                           Clinicians/
        Commissioners      Specialist
                             nurses
ARUK- plans for INBANK


A national research infrastructure to facilitate
coordinated musculoskeletal research, including
i) a searchable catalogue of extant studies and
ii) a prospective research database
- recruitment to bespoke studies
- biological samples
- linkage to national datasets
DANBIO
Courtesy of Merete Hetland
BSR and Healthcare Quality Improvement
Partnership (HQIP) Audit



• HQIP invited bids 2011
• BSR bid “ National Audit of Rheumatoid and Early
  Inflammatory Arthritis” accepted 2012
National Institute for Health and Clinical
Excellence (NICE)

• RA Guidelines 2009
• DMARDs within 3 months of symptom onset
• Measure CRP and key components of disease activity
  (DAS) monthly until disease controlled
• Annual review for disease assessment, co-morbidities,
  MDT, effect of RA on person’s life
3 Key Audit Objectives


• Rapid control of joint inflammation: Audit data on new
  patients for 1 month in rheumatology clinics with follow up
  data over 3 months. Key outcomes include patient
  recorded disease severity, satisfaction with access to
  service, advice and education (NICE). Repeat annually.
• Cardiovascular risk factors: Audit at RA annual review
  (NICE) in collaboration with Primary Care. One month
  annually.
• Ability to work: generate work related outcomes and audit
  with above.
Healthcare Quality Improvement Partnership(HQIP)
National Audit Rheumatoid Arthritis


                                                                                  National Audit
                                                                                    for 3 years
                                                                                   potential to
                                                                                   extend for 5
                                                                  2013                 years
                                                  Spring          Implementat
                                                                  ion of
                                                  Summer
                                   Spring 2013                    national
                                                  2013            audit and
                                   Contract let
                                                  Development     data analysis
                    Autumn         for national
                                                  and design of
                    2012           audit
                                                  implementati
                    Tender                        on
                    released for
                    provider
    July 2012
                    bidding
    Specification
    workshop for
    proposers
                             Themed workshops, stakeholder
                            engagement, testing and exercising
Minimum Core Dataset to enable future
developments – collect data once
• Data direct from the clinical setting
• Disease monitoring
          - adverse events
          - lifestyle factors
          - CV risk factors
• Collect outcomes important to
   patients
• Inform patient decision making
Improved quality and consistency of
rheumatology services - Challenges and
opportunities

• Clinical engagement for data collection- user friendly IT
• Patient engagement
• Continuous data collection
• Clinical- routine practice, audit (local and national),
  revalidation
• Discussion with devolved nations
• Research (BSRBR, other databases)
Dr Ian Rowe developing a national audit of rheumatoid and early inflammatory arthritis

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Dr Ian Rowe developing a national audit of rheumatoid and early inflammatory arthritis

  • 1. Developing a National Audit for Rheumatoid and Early Inflammatory Arthritis Ian Rowe Chair Clinical Affairs Committee, BSR
  • 2. Outline • The British Society for Rheumatology • Challenges in improving patient outcomes for RA in UK • What is the BSR Biologics Register ? • Approach to the HQIP National Audit in RA • Opportunities
  • 3. British Society for Rheumatology • Covers England, Wales, Scotland and Northern Ireland Membership • Members include consultant rheumatologists, trainees, allied organisation health professionals and GPs • Closer working with British Health Professionals in Rheumatology (BHPR) Guidelines and • Annual Conference over 2,000 clinicians Education • E learning pilot 2012 • Rheumatology International Journal • HQIP national audit of RA 2012 • Rheumatology conditions seen as outpatient activity rather than Challenges ambulatory care and Long Terms Conditions • Large variation in how services are delivered • Little to inform service specifications • Biologics register managed by BSR , over 25,000 patients BSR Biologics Register • Ankylosing Spondylitis register commenced 2012
  • 4. Defining Rheumatology A multidisciplinary branch of medicine that deals with the investigation, diagnosis and management of patients with arthritis and other musculoskeletal conditions. This incorporates over 200 disorders affecting joints, bones, muscles and soft tissues, including inflammatory arthritis and other systemic autoimmune disorders, vasculitis, soft tissue conditions, spinal pain and metabolic bone disease. A significant number of musculoskeletal conditions also affect other organ systems. Rheumatology is in the midst of a period of exponential growth in knowledge of the mechanisms of rheumatologic and auto-immune disease, knowledge which is transforming and advancing our treatment options. There is untapped potential for Quality improvement through addressing variation in treatment and care; Innovation through implementing best practice; Prevention of unnecessary disability and improvements in Productivity. British Society for Rheumatology Dec 2011.
  • 5. RA-Variation in Quality and Outcomes Innovation and Productivity: Early effective treatment needed; RA/IA represent a major health problem; 1 million people (England); cost £8 billion annually (UK); delays in treatment can result in a more aggressive disease; earlier treatment may produce cost savings. Quality Improvement: Major Variations in Care National: Different levels of Care and variation in services i) There is existing wide variation in treatment and outcomes; e.g. only 10% of patients are put onto DMARDs within 3 months of symptom onset in spite of NICE guidelines. ii) Only 63% of patients in acute trusts provided annual review for RA patients to monitor disease progression and emergence of co-morbidities (NAO, 2009; NICE, 2009) International : Poorer Access: Biologic Treatment and Waiting times Europe unsuccessful Disease activity Score 3.2 (mild Spain waits 2 weeks from referral, treatment with a disease) maximum Germany 12 weeks single DMARD U.K. unsuccessful Disease activity Score 5.1 U.K. standard set 3 months from treatment with TWO (severe disease) symptom onset, not met DMARD Meeting Marks in the LSE England was given a 4/10 – the higher marks were awarded to European report in 2012 lowest mark in joint placing with Germany (8/10) and Sweden (9/10). guidelines Poland and Slovenia Source: A Common Disease with Uncommon Treatment ,European Guideline Variations and , Access to Innovative Therapies for Rheumatoid Arthritis LSE June 2102
  • 6. BSR Biologics Register RA Largest European biologics register for patients with RA • Established 2001 • Monitoring long term safety profile • Now >25,000 patients • Cohorts of patients recruited • Six different biologic drugs • Research database: infection risk; comparison between drugs • Established as part of NICE approval for biologics • Funded by pharmaceutical companies • Paper moving to electronic data capture
  • 7. Potential for other opportunities and use; potential for links to other research databases e.g. CPRD; INBANK Policy makers/ Regulators Patients Pharma Biologics Researchers Register Clinicians/ Commissioners Specialist nurses
  • 8. ARUK- plans for INBANK A national research infrastructure to facilitate coordinated musculoskeletal research, including i) a searchable catalogue of extant studies and ii) a prospective research database - recruitment to bespoke studies - biological samples - linkage to national datasets
  • 10. BSR and Healthcare Quality Improvement Partnership (HQIP) Audit • HQIP invited bids 2011 • BSR bid “ National Audit of Rheumatoid and Early Inflammatory Arthritis” accepted 2012
  • 11. National Institute for Health and Clinical Excellence (NICE) • RA Guidelines 2009 • DMARDs within 3 months of symptom onset • Measure CRP and key components of disease activity (DAS) monthly until disease controlled • Annual review for disease assessment, co-morbidities, MDT, effect of RA on person’s life
  • 12. 3 Key Audit Objectives • Rapid control of joint inflammation: Audit data on new patients for 1 month in rheumatology clinics with follow up data over 3 months. Key outcomes include patient recorded disease severity, satisfaction with access to service, advice and education (NICE). Repeat annually. • Cardiovascular risk factors: Audit at RA annual review (NICE) in collaboration with Primary Care. One month annually. • Ability to work: generate work related outcomes and audit with above.
  • 13. Healthcare Quality Improvement Partnership(HQIP) National Audit Rheumatoid Arthritis National Audit for 3 years potential to extend for 5 2013 years Spring Implementat ion of Summer Spring 2013 national 2013 audit and Contract let Development data analysis Autumn for national and design of 2012 audit implementati Tender on released for provider July 2012 bidding Specification workshop for proposers Themed workshops, stakeholder engagement, testing and exercising
  • 14. Minimum Core Dataset to enable future developments – collect data once • Data direct from the clinical setting • Disease monitoring - adverse events - lifestyle factors - CV risk factors • Collect outcomes important to patients • Inform patient decision making
  • 15. Improved quality and consistency of rheumatology services - Challenges and opportunities • Clinical engagement for data collection- user friendly IT • Patient engagement • Continuous data collection • Clinical- routine practice, audit (local and national), revalidation • Discussion with devolved nations • Research (BSRBR, other databases)