1. PROMs Martin Orton – NHS Information Centre

2. Overview PROMs Overview IC’s central role in implementation –Matching & linking to HES & NJR –Applying the scoring algorithms –Providing the data for analysis Publication and data availability –Publications of information and indicators –Extract service for the data The likely uses of PROMs

3. PROMs PROMs are a means of assessing effectiveness of care from the patient’s perspective: –Effectiveness of care. This means understanding success rates from different treatments for different conditions. Assessing this will include clinical measures such as mortality or survival rates and measures of clinical improvement. Just as important is the effectiveness of care from the patient’s own perspective which will be measured through patient-reported outcomes measures (PROMs)…[1][1] [1] High Quality Care for All: NHS Next Stage Review Final Report. Department of Health. June 2008. Chapter 4.[1]

4. The PROMs programme Building the evidence base: electives 4. Implement 5. Evaluate 2. Pilot 1. Identify 3. Review Literature review (LSHTM 2005) Pilot study (LSHTM 2007) Procurement & guidance (DH) Cost Benefit Analysis To follow… Which areas? Which measures? Assess the evidence base How to administer? Questionnaire design? Sample sizes? Statistical power? Feasible? Cost- effective? Acceptable? How to implement? How to support implementation ? Guidance? What works well? What hasn’t worked? Where should changes be made?

5. National Implementation 5 ProcedureCondition-specificGeneric Unilateral Hip ReplacementOxford Hip ScoreEQ-5D* Unilateral Knee Replacement Oxford Knee ScoreEQ-5D* Groin Hernia SurgeryNoneEQ-5D* Varicose Vein SurgeryAberdeen Varicose Vein Questionnaire EQ-5D* *: EQ-5D TM is a trademark of the EuroQol Group (www.euroqol.org) Robust tool for health economic analysis, and comparison across procedures; Recommended by NICE More sensitive tool for intra-procedure comparisons; often more familiar to clinicians – e.g. OHS / OKS PROMs questionnaires combine 2 types of measures to maximise impact of collected data

6. PROMs contractual model Aggregated data PROMs “Analysis” Information Centre: “Linkage” & “Repository” identifiable Pre-op IC OtherSUSNJR Post-op Scoring, outcomes Aggregation Academic stakeholders Case-mix adjustment Develop adjustment Record-level data Healthcare stakeholders Extract Service Linked Pseud’sed Aggregated data Record level data Record level data PROMs “Administration” PROMs “Aggregation”

7. Linkage to HES Link to HES –Provides the demographics of the patient (very minimum collected in the PROMs questionnaires) –Provides details of the operation (OPCS-4 codes) and diagnosis (ICD-10) –Provides details of the commissioner and provider –Provides information on co-morbidities to aid casemix adjustment –Ability to link to previous episodes of care

8. Linkage to National Joint Registry Link to NJR (for Hip & Knee replacements) –Provides more detailed data on the procedure (techniques, prosthetics, cement etc) –Extra information on cause/reason

9. Matching Flowchart HES id & episode matching Pre-op Qs Q1s HES NJR Participation rates Scoring Q1s Pre-op scores Participation rates Monthly indicators

10. Matching Flowchart HES id & episode matching Pre-op Qs Q1s HES NJR Participation rates Scoring Q1s Pre-op scores Match to Q1s Post-op Qs Q2s Scoring Q1+Q2 pairs Response rates Participation rates Monthly indicators

11. Matching Flowchart HES id & episode matching Pre-op Qs Q1s HES NJR Participation rates Scoring Q1s Pre-op scores Match to Q1s Post-op Qs Q2s Scoring Q1+Q2 pairs Response rates Output for analysis & extracts Analysis & casemix adjustment Health Gain scores Participation rates Monthly indicators

12. IC Functions Pre-op & Post-op questionnaires scored and compared to provide health gain (using the instrument developer’s scoring algorithms) All the above provides the data for analysis Aggregation/Analysis contractor is developing and will routinely apply case-mix and risk adjustment in order to produce regularly average health gain data by commissioner (PCT) and provider

13. IC Publications & Management Information (monthly) Participation rates – based on the pre-op questionnaires Response rates – Completion of pre-op and post- op questionnaires Pre-op scores – unadjusted data, used for appropriateness of referrals, and exploring health inequalities Outcomes – Casemix adjusted to show health gain by provider & commissioner and maybe probability of a positive benefit

14. IC Extract Service PROMs data will be available through the HES data extract service, intended for providers and researchers Extra Ts & Cs to reflect PROMs licencing Anonymised or pseudonymised patient id unless with NIGB (Ethics Committee) approval Sensitive HES fields only with NIGB (DMSG) approval Expect extract service to start from early 2010, but dependent on sufficiently good data quality

15. Current Position Pre-op questionnaires started in April 09, for procedures in Apr, May & June First post-op questionnaires received by IC Sept 09 (3 months post op. for groin hernias & varicose veins)

16. Information Timing All timings will be dependent on the quality being sufficiently fit for purpose We expect to release the provisional management information on participation rates soon, and follow with response rates. Expect the extract service to start in early 2010 Expect indicators to be available later in 2010 (summer). These are new indicators, so need testing with sufficient volumes before release.

17. PROMs Outcomes Indicators Outcome indicators are expected to show health gain, casemix adjusted, by provider and commissioner (PCT) Will be available in Indicators for Quality Improvement (IQI) Will be supplied to NHS Choices These indicators can then be used with other indicators to provide a richer indication of the quality of care

18. Expected Use of PROMs Local use of data » Benchmarking against peers leading to improvements Quality Accounts » Telling the story about performance CQUIN » Financial rewards for high quality Choice » Choosing high quality providers WCC » Allocate scarce resources efficiently Tackling health inequalities » Appropriate access for given needs Regulation (CQC) » Setting minimum standards Standard contracts » Commissioners holding providers to account PROMs

19. Find out more 0845 300 6016 www.ic.nhs.uk