CARE AND EDUCATION RESEARCH GROUP

Keeping CR on the agendaKeeping CR on the agenda

Bob LewinProfessor of Rehabilitation RJPL1@york.ac.uk

Some termsSome termsMinimum datasetMinimum dataset (MDS) – the information – that is collected by everyone in the audit – can be built into any database system – eg. Tomcat.

CCADCCAD – Central Cardiac Audit Datasets – the collection of UK audits for CARDIAC specialties - MI, Surgery, Stents, ICDs, Arrhythmia nursing (coming soon) and Cardiac Rehabilitation -

The NACR DatabaseThe NACR Database – Lotus notes database that is used to send the data up to CCAD who store the information

BenchmarkingBenchmarking – comparing your results with other programmes

Process BenchmarkingProcess Benchmarking – comparing how the outcomes of CR are effected by the different processes the patient has experienced

AuditAudit – reporting what is achieved by each programme, where needs are not being met (locality, gender, ethnicity, social class etc)

Principles of the NACRPrinciples of the NACR

• no unfair ‘league tables’ – improvement scores not raw outcomes

• record resources (staff) available to each programme to make fair comparisons as show how results depend on resources

• include local indices of deprivation and other health indices to ensure fair comparisons

• benchmarking confidential to each programme

• developed by CR for CR – it’s going to be as good as YOUYOU make it

Minimum DatasetMinimum Dataset

Literature search, international consultation, possible questionnaires tried out by a panel of 100 patients and clinician from 10 CR programmes focus groups to select best measures, dissemination to experts, professional bodies and the clinical community for comment.

Download papers, dataset, definitions and the questionnaires Download papers, dataset, definitions and the questionnaires from www.cardiacrehabilitation.org.uk/datasetsfrom www.cardiacrehabilitation.org.uk/datasets

BHF/BACR/CCAD Lotus DatabaseBHF/BACR/CCAD Lotus Database

All your data can be exported to Excel at any time for your own purposes

Many users can unite secondary and community care

Template letters or design your own

Built in ‘buttons’ for commonly requested reports

30 ‘spare fields’ for you to enter any other data you want or need to collect – e.g. repeat exercise tests, dietary assessment, etc.

Lots of free text ‘comments boxes’ for you to record notes – add as much information as you want.

Lists anxious and depressed patients automatically etc etc etc

And it is free courtesy of the BHFAnd it is free courtesy of the BHF

Cardiac Rehab PatientsCardiac Rehab Patients fill in questionnaires 3 times, before, after CR and at 12 months

Cardiac Rehab PatientsCardiac Rehab Patients fill in questionnaires 3 times, before, after CR and at 12 months

CR programme staff enter dataCR programme staff enter dataCR programme staff enter dataCR programme staff enter data

BHF YorkBHF YorkBHF YorkBHF York

Annual Audit Reports toAnnual Audit Reports toDH, HCC, BHF, Public, PatientsDH, HCC, BHF, Public, Patients

Annual Audit Reports toAnnual Audit Reports toDH, HCC, BHF, Public, PatientsDH, HCC, BHF, Public, Patients

CCADCCADCCADCCAD

April - Dec 2005

Year 2. 2006 Year 3. 2007 Year 4 2008

Q2 Q3 Q4 Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Total

Newly enrolled

15 25 45 45 45 45 45 40 40 35

Target

ActualLinked

15 40 85 130

210

100

175 220 265 305 345 380 380

We need every CR programme to joinWe need every CR programme to joinPlaned to recruit 45 per quarter so that recruitment is complete end 2007Planed to recruit 45 per quarter so that recruitment is complete end 2007

projected figure by end of 2projected figure by end of 2ndnd quarter 2006 was 130 actual no. with software quarter 2006 was 130 actual no. with software committed to take part is 210committed to take part is 210

Number linked electronically 101 Number linked electronically 101

Not connected, Or, less than 12 months (April-March) data Not connected, Or, less than 12 months (April-March) data AND ANNUAL staffing questionnaire for everyoneAND ANNUAL staffing questionnaire for everyone

Not connected, Or, less than 12 months (April-March) data Not connected, Or, less than 12 months (April-March) data AND ANNUAL staffing questionnaire for everyoneAND ANNUAL staffing questionnaire for everyone

BHF YorkBHF YorkBHF YorkBHF York

Annual National Audit Reports toAnnual National Audit Reports toHCC, BHF, Public, Patients.HCC, BHF, Public, Patients.

Annual National Audit Reports toAnnual National Audit Reports toHCC, BHF, Public, Patients.HCC, BHF, Public, Patients.

Annual / online / paper survey with Alton Annual / online / paper survey with Alton

Annual / online / paper survey

HCC – will use this data to assess trusts HCC – will use this data to assess trusts IF you IF you complete the paper survey and join the NACRcomplete the paper survey and join the NACR

BHF YorkBHF YorkBHF YorkBHF York

Smart group - Smart group - nacr-users@smartgroups.comnacr-users@smartgroups.com Smart group - Smart group - nacr-users@smartgroups.comnacr-users@smartgroups.com

CCAD CCAD HELPLINEHELPLINE

CCAD CCAD HELPLINEHELPLINE

CARDIAC NETWORKCARDIAC NETWORKLee, MargaretLee, Margaret

CARDIAC NETWORKCARDIAC NETWORKLee, MargaretLee, Margaret

Other UsersOther Users Other UsersOther Users YouYou YouYou

BHF BHF REGIONAL CRCsREGIONAL CRCs

BHF BHF REGIONAL CRCsREGIONAL CRCs

You’re never alone with the NACR!

BHF YorkBHF York (all part-time)(all part-time)Project Manager – Corinna PetreCorinna PetreData Manager / analysis - Simon CoultonSimon Coulton Data Quality officer – Jo OrchardJo Orchard Secretarial / Admin – Roz ThompsonStatistician – to be appointed

BHF regional Cardiac Rehabilitation Coordinators

Shirley Hall, Dianne Card, Steph Dilnot, Step Lillie, Elaine TannerShirley Hall, Dianne Card, Steph Dilnot, Step Lillie, Elaine Tanner

Cardiac Network

Lee PanterLee Panter, Margaret Leid

CCADHelp Desk at CCAD for your IT people

PeoplePeople

Organisations involvedOrganisations involved

BHFBHF - champion, financial sponsor

BACRBACR – part of core requirement for a CR programme?

DH Heart TeamDH Heart Team – Roger Boyle has put resource in

Cardiac NetworksCardiac Networks – Lee, Margaret

Health & Social Care Information Systems - Health & Social Care Information Systems - mother organisation mother organisation forfor CCAD, HES and other NHS and social datasetsCCAD, HES and other NHS and social datasets

HCC – HCC – will use our data to assess trusts IF you complete the paper will use our data to assess trusts IF you complete the paper survey and join the NACRsurvey and join the NACR

The audit will provide you withThe audit will provide you with • automatic reporting of NSF targets & many other reportsNSF targets & many other reports about

your programme

• evidenceevidence about what you achieve as a health gain for your local population

• evidence to inform local plannerevidence to inform local plannerss as to the adequacy of CR provision in your patch

• an understanding of how well funded you are compared to the national norms

• the ability to compare what your programme achieves with the national averages on a range of outcomes – national benchmarking

Descriptive overview of patients on the databaseDescriptive overview of patients on the database

Number of patients on the database 25,557

% Male 70

Mean age at initiating event 65 yrs

% White 91%

Mean time from initiating event to referral 14.2 days

Mean time from initiating event to invitation 36.4 days

Mean time from initiating event to start47.9 days

Rehab Processes across 4 ‘stages’Rehab Processes across 4 ‘stages’

31.9

19.522.9

53.1

43.1

28.7

25.1

28.7

17.2

3.20.6

9.4

1.1 0.5

12.4

01.8 1

16.3

10.6

0

10

20

30

40

50

60

70

80

90

100

%

NSF targets measured at 12 weeks…NSF targets measured at 12 weeks…

NSF Target Week

0

Week

12

50% will be non-smokers 81% 90%

50% will have BMI <30kg/m2 73% 77%

50% will be exercising 30 minutes 5 times per week

22% 50%

those who attend – Quality of life indicators…those who attend – Quality of life indicators…

3.61

2.29 2.32

2.11

2.48

2.33

3.13

2.36

2.97

1.971.86

1.66

2.162.26

2.71

1.87

1

2

3

4

5

Fitness Feelings Daily activities Social activities Pain Change in health Overall health Overall quality oflife

Da

rtm

ou

th C

OO

P s

co

re

Of those who do attend – anxiety and depression…Of those who do attend – anxiety and depression…

5.98

4.41

5.08

3.69

0

1

2

3

4

5

6

7

8

9

10

Anxiety Depression

HA

DS

Quality & Service Delivery

Descriptives of CR programme - logistic regression modelling assessing factors associated with factors associated with successsuccess. – (inc. disability, age, programme staffing level etc.

Weighted comparison of uptake for cardiac events (acute MI, PTCA, CABG) stratified by Acute Trust, PCT, SHA, age, gender, ethnicity. Additional PCT, Acute Trust & SHA factors - regression modelling assessing external factors associated with uptakefactors associated with uptake

Additional demographic factors, social social deprivation and health indices factors added deprivation and health indices factors added to regression model to explore factors to regression model to explore factors associated with success.associated with success.

ONSONS

HESHES

CR-MDSCR-MDS

Analysis

By 2002 85% of MI and revasc patients will be offered cardiac rehabilitation

After that all except unstable angina patients should receive CR.

Best guestimate 25-30% of patients getting CR in 2005-6.

ProblemsProblems

under treatment

inequalities – women, poor, ethnic minorities, depressed, smokers, elderly, all believed to be under-represented, postcode lottery

failure to invite all indicated in NSF – angina, heart failure, ICD, arrhythmia

dropout – varies widely from programme to programme

staffing – from single-handed, part-time, coordinator for 600 patients to a full multi-disciplinary team. Only 50% of programmes have an identifiable budget.

poor outcomes?- pragmatic’ RCT by Robert West

Can Cardiac rehabilitation survive? Can Cardiac rehabilitation survive? 2000/2001 £31m for revascularisation2000/2001 £31m for revascularisation2002/2003 £161m. 400% increase2002/2003 £161m. 400% increaseProbably 2-5% reduction in mortality from Probably 2-5% reduction in mortality from CABG vs. medical treatmentCABG vs. medical treatmentNo increase in funding of CR apart No increase in funding of CR apart from BHF Lottery £4m from BHF Lottery £4m

not costed in ‘payment per treatment’ not costed in ‘payment per treatment’

Been rejected by GPs as a QOF target.Been rejected by GPs as a QOF target.

In the new age of ‘self-management’ and In the new age of ‘self-management’ and ‘Chronic Disease Management’ why have ‘Chronic Disease Management’ why have we not seen a single mention of CR in we not seen a single mention of CR in Government literature?Government literature?

Using NSF criteria for those expected to Using NSF criteria for those expected to benefit, guesstimated shortfall of benefit, guesstimated shortfall of 330,000 patients a year330,000 patients a year

Evidence based Evidence based HealthcareHealthcare

CentralCardiacAuditDatabase

NationalPacemaker &ICD DatabaseRegional variations in ICDimplantation rate.

Only health authorities shown in orange reach the new implant rate required by N.I.C.E. guidelines.

How do others get funding?

NACRed or wot? The good news is…NACRed or wot? The good news is…

The technology works and is helping programmes all over the The technology works and is helping programmes all over the country organise and communicate bettercountry organise and communicate better

information sharing between trusts and across primary/secondary information sharing between trusts and across primary/secondary care may be about to become very simple making the project even care may be about to become very simple making the project even more effectivemore effective

around 50% of UK programmes have already committedaround 50% of UK programmes have already committed

there is solid support from major stakeholders, BHF, DH, HCCthere is solid support from major stakeholders, BHF, DH, HCC

NICE guidance on MI and secondary prevention strongly supports NICE guidance on MI and secondary prevention strongly supports CR, indeed treats it as obvious that all patients including heart CR, indeed treats it as obvious that all patients including heart failure patients should take partfailure patients should take part

Amanda Hutchinson – Healthcare Commission Amanda Hutchinson – Healthcare Commission

““I was involved in a large project about the National Service I was involved in a large project about the National Service Framework and I became increasingly passionate about the Framework and I became increasingly passionate about the importance of cardiac rehabilitation. importance of cardiac rehabilitation.

We identified that it was one of the standards where less progress We identified that it was one of the standards where less progress had been made despite the enormous commitment of staff and the had been made despite the enormous commitment of staff and the effort that was being made to try and make it work given the effort that was being made to try and make it work given the historic lack of priority that cardiac rehabilitation services have historic lack of priority that cardiac rehabilitation services have been given.been given.

… … patients were extremely positive about this as a service and it patients were extremely positive about this as a service and it was something that was valued by everyone we spoke to and was something that was valued by everyone we spoke to and surveyed.surveyed.

A key finding was that only 16% of Trusts were able to provide the A key finding was that only 16% of Trusts were able to provide the data we required ... data we required ... This is why the audit database is so important, This is why the audit database is so important, because without the data, it is extremely difficult to make a case for because without the data, it is extremely difficult to make a case for service improvement and why the audit is such an exciting service improvement and why the audit is such an exciting prospect.”prospect.”

Change the futureChange the future

COULD be the beginning of the best period yet for CR – BUT it COULD be the beginning of the best period yet for CR – BUT it could also be the beginning of the end - replaced by leaflet bearing could also be the beginning of the end - replaced by leaflet bearing lay health trainers in primary care.lay health trainers in primary care.

We have powerful friends but We have powerful friends but NO active championsNO active champions – we are going – we are going to have to to have to DO IT OURSELVES working with charities (BHF), DO IT OURSELVES working with charities (BHF), patients, the media and politicianspatients, the media and politicians..

Proposal - we should join together in a sustained 5 year campaign Proposal - we should join together in a sustained 5 year campaign using NACRed to draw attention to the unmet need.using NACRed to draw attention to the unmet need.

We should show what we can achieve and how much more we We should show what we can achieve and how much more we couldcould achieve achieve if we were all adequately fundedif we were all adequately funded..

And we must all do it all together – have a moan, whinge all you And we must all do it all together – have a moan, whinge all you want complain about the extra work - but do it – join NACR today want complain about the extra work - but do it – join NACR today and change the future.and change the future.

WE WILL WIN! WE WILL WIN!