Prof Devlin discusses the rationale for the PROMs programme and provides an overview of the various uses of the EQ-5D in England—for example by NICE in health technology assessment, in population surveys and in the English NHS PROMS program. The presentation also reviews how EQ-5D data are collected, analysed and used in the UK to inform decisions by health care providers, payers and patients.

1. NHS experience with the EQ-5D as an
Outcome Measure
Professor Nancy J Devlin
Patient-Reported Outcome Measurement in Alberta:
Potential of the EQ-5D Symposium
Health Quality Council of Alberta, the Institute of Health Economics and Alberta
Health Services
Canmore, Canada • 18 -19 October 2012

2. Content
1. Use of the EQ-5D in the NHS
2. The NHS PROMs programme and rationale
3. Recent and planned developments
4. Analysing EQ-5D data: profiles, index-weighted
profiles and EQ-VAS
5. What insights have been generated?
6. Who uses the data and how?
7. What is the value of routine outcomes
measurement?

3. 1. The use of the EQ-5D in the NHS

4. • EQ-5D is the instrument recommended by NICE for
use in evidence submitted to its HTA process
• Informs decisions about reimbursement and (under
VBP) pricing of new technologies
• EQ-5D is included in population health surveys
• Informs ‘needs based’ allocations of budgets between
regions
• EQ-5D is included in the NHS PROMs programme
• Multiple uses of these data e.g.. assessing provider
performance

5. 2. The NHS PROMS programme

6. Background
• Concerns about productivity in the NHS
• Increased emphasis on patient choice
• but little information available for patients about
provider performance in terms of patient health
• Prospective reimbursement for providers intended to
promote technical efficiency
• but the incentives focused on activity, not outcomes.
• Concerns about effectiveness and cost effectiveness in the
NHS
• especially relevant in a period of fiscal restraint
• disparity between HTA processes and knowledge about
extant services

7. Why PROMs?
• Patients’ own assessment of their health
“The use of PRO instruments is part of a general movement toward
the idea that the patient, properly queried, is the best source of
information about how he or she feels”. [FDA 2006]
• PROMs put patient’s views at the heart of NHS decision making
“If quality is to be at the heart of everything we do, it must be
understood from the perspective of the patient.”
• Patients welcome being asked/involved; avoidance of observer
bias; increases public accountability
• Appropriate for most health care, as patients seek
• Reduction in symptoms
• Reduction in disability
• Improvements in quality of life

8. The PROMs programme
• From 2009: routine collection of generic (EQ-5D) and disease
specific PROMs via paper and pencil questionnaires
• In hospital at pre-surgery; by post 3 (or 6) months after surgery
• A contractual obligation for providers of NHS care to collect these
data
• Provide ‘snapshots’ of patients self-reported health before and
after treatment; observed changes in health used to explore
differences in provider performance.
• 4 elective procedures: hip and knee surgery; hernia repair; varicose
veins.
• These procedures were selected on the basis of:
– High volume procedures
– Significant resource cost
– Potential variation in quality

9. • Survived a change of Government
• Central to continued efforts to
improve effectiveness and cost
effectiveness of NHS services
“Information generated by patients themselves will be
critical…and will include wider use of effective tools like Patient
Reported Outcome Measures (PROMs)…At present, PROMs,
other outcome measures …are not used widely enough. The
Department …will extend PROMs across the NHS wherever
practicable”

10. Participation rates
• As at August 2012, over 510,000 pre-operative questionnaires have been
completed, which is around 70% of all eligible activity.
• As at August 2012, over 330,000 post-operative questionnaires have been
returned. Response rates are usually around 80%.
Procedure Pre-operative Post-operative
questionnaires questionnaires
completed returned
Groin Hernia Repair 119,000 76,000
Hip Replacement 163,000 111,000
Knee Replacement 185,000 125,000
Varicose Vein Surgery 44,000 25,000

11. 3. Recent and planned developments

12. Recent developments
New arrangements for data collection
• Shift away from central data collection, to collection/reporting of PROMs via a
Framework
• Aims to make ensure data collection efficient as possible.
• Four suppliers currently on the Framework, pre-approved by DH
• Providers can choose which to use.
• Allows local innovation e.g. electronic data capture
PROMs data ‘clearing house’.
• Single landing point for PROMs data from multiple sources.
• Multiple functions:
• Linkage to HES and/or other clinical datasets ; case-mix adjustment; scoring
of PROMs measures; publish official statistics; data release to providers.
Open access to patient-level anonymised data

13. Recent developments
Extensions in coverage: PROMs included in the GP
patient survey.
Changes in PROs: shift to the EQ-5D-5L
Case mix adjustment methodology developed
• Crucial to ensure that between-provider comparisons
reflect differences in performance, not factors outside
the hospitals’ control.

14. Planned developments
• Extension of PROMs into a wide range of areas, including:
• Coronary revascularisation; Muscular skeletal; Cancer
survivorship; Cosmetic surgery
• Can data collection be extended to privately-financed
services?
• Development of a new Outcomes and Experience
questionnaire (OEQ)
• Pilots about to complete and possible roll out of PROMs
in long term conditions:
• egg. asthma, diabetes, stroke, COPD, depression

15. 4. Analysing EQ-5D data:
profiles, index-weighted profiles
and EQ-VAS

16. EQ-5D profile

17. Profiles – distributions

18. Profiles – categorising change
Feng, Parkin, Devlin (2012) Assessing the performance of the EQ-VAS in the NHS PROMs
programme, OHE Research Paper 12/01.

19. Hospital performance by profile dimension
Usual activities
Pain/discomfort
Gutacker N, Bojke C, Daidone S, Devlin N, Street A. (2012) Analysing hospital variations in health outcome at the
level of EQ-5D dimensions. Research Paper No. 74, Centre for Health Economics, University of York.

20. Index weighted profiles
• In cost effectiveness analysis, patients’ profiles assigned QoL
‘weights’: EQ Index
• Reflect preferences (‘utilities’) of the general public
obtained using stated preference methods.
• Normative judgement – allocation of taxpayer resources
• Do the same arguments apply to PROMs?
• There is no ‘neutral’ way to summarise profiles
• Each value set will have its own properties
• Can bias statistical inference.
Parkin D, Rice N, Devlin N. (2010) Statistical analysis of EQ-5D profiles: does the use of value sets bias
inference? Medical Decision Making (forthcoming).

21. • EQ-VAS

22. EQ-VAS and EQ Index distributions
Feng, Parkin, Devlin (2012) Assessing the performance of the EQ-VAS in the NHS PROMs programme, OHE
Research Paper 12/01.

23. 3. What insights have been generated?

24. Hip replacement: variations in performance (OHS)

25. Hip replacement: variations in performance (∆ QALYs)

26. Cost/QALY (£000)
0
1
2
3
5
6
7
8
9
4
1
4
7
10
13
16
19
22
25
28
31
34
37
40
43
46
49
52
55
58
61
64
67
70
73
Ordered hospitals
76
79
82
adjusted, upper/lower 95% CI
85
88
91
94
97
100
103
106
109
112
NHS hospitals: Cost per QALY: Degradation in health, case mix
115
118
121
124
127
130
133
136

27. The variation in NHS hospitals’ cost per QALY is closely related to variations in unit costs; a
much smaller proportion of the variation in cost per QALY is explained by variations in QALYs
(R2=0.17).

28. Key insights
• There is considerable variation between providers
performance in improving patient health
• The variation does not seem to be related to variations in
provider cost
• Implies that there is scope for providers to improve performance in
improving patient health, without increasing costs.
• Key to this is learning what it is that high performing providers are
doing well (and poor performers are not).
• Patients who are 11111 before surgery
• need for more consistent, explicit approach to referral decisions?

29. 4. Who uses the data, and how do they
use it?

30. • Providers are very active in accessing/using their
own data
• Monitoring clinical quality
• Facilitates a dialogue between managers and clinicians
• Patients are not using the data
• Less than 5% patients consult any information on
provider performance before choosing their hospital
(Dixon et al 2010).
• More efforts required to understand how to present
data in the most meaningful way for patients?

31. 4. What is the value of routine
outcomes measurement?

32. Clinical/hospital use of data »» Benchmarking against peers; admission criteria
Local public reporting »» Telling the story about performance
Quality measure in contracts »» Pay for performance
Patient choice »» Choosing high quality providers; informed
treatment choices
Resource »» Allocate scarce resources more efficiently
allocation/productivity
measures
Tackling health inequalities »» Appropriate access for given needs
Regulation »» Assessing minimum standards
National accounting »» Driving economy-wide productivity
improvements
Outcomes Framework »» Holding the NHS to account

33. Resources on PROMs
• University of Oxford website on PROM
instruments
http://phi.uhce.ox.ac.uk/perl/phig/phidb_search.pl
• London School of Hygiene and Tropical Medicine
website on PROMs-related papers and reports
http://proms.lshtm.ac.uk/
• NHS Information Centre website on PROMs data
http://www.hesonline.nhs.uk/Ease/servlet/ContentServer
?siteID=1937&categoryID=1295