Why on earth would I want data: the use & misuse of health informatics

Dr Fawzia RahmanFirst BACCH trainees’ day,

RCPCH, 19th April 2013

Learning aims

• Why you might want data• what sort of data• how to get it• how to make sense of it• how to use it.

Why on earth do you want data?

• For yourself?• For someone else? Who might that be?

Why on earth do you want data?

• To show what you have been doing( quantity)

• To show you have done it well( quality)

• To see if you can do it better( quality improvement)

( you= person/ service/ manager)

So, Doctor, do tell me,what have you been doing?

• If you were a trainee surgeon, what would you show?

• You are a BACCH trainee: what can you show?• Can you keep a basic record of the cases you

see? (hands up anyone who does!)• If yes, how?• If no, why not?

The top 30 diagnoses that cover 90% of cases seen1. eating disorder2. Conduct disorder3. tic disorder4. behavioural & emotional disorder unspecified5. sleep disorder6. self harm7. Autistic spectrum disorder 8. Attention deficit hyperactivity disorder9. behaviour problems related to learning disability10. moderate mental retardation11. severe mental retardation12. Disorder of speech and language development13. Specific developmental disorder of motor function14. Constipation15. Metabolic disorders16. Congenital malformation17. Chromosomal abnormality18. Down syndrome19. Epilepsy20. primary disorders of muscle21. Cerebral palsy22. congenital malformation of brain 23. neurological problem NOS24. Low vision, both eyes25. Conductive hearing loss26. Sensory neural hearing loss, bilateral27. Neglect28. Non accidental injury29. Child sexual abuse30. Emotional abuse

• 1-8 mental health (behaviour)

• 9-13 learning (development)

• 14-26 physical

• 27-30 child protection

So you have the data

• It is now time for your next training assessment at the end of this posting

• You have a graph from the list of main diagnoses of the cases you have seen over the last 6 months

• Would you use it?• How?

Your activity data after 6 months any specific diagnoses codes also available

behaviour41%

child protection2%

learning24%

no diagnosis4%

physical24%

Psychosocial dysfunction3%

void1% NAD

1%

So far so good, but..

• So you know how many cases you have seen , with main diagnosis.

• That is your case load ( numbers of children, and contacts) & case mix ( diagnoses)

• Now tell me , Doctor,• How would you go about demonstrating the

quality of your work?

Using data to demonstrate qualityFour domains of quality

2 matter to individuals

• Access

can you get health care?

• Effectiveness do you like it?

(interpersonal)

does it work?( technical)

2 matter to populations

• Equity

is care fairly distributed?

• Efficiency could the resource used be

more productive? ( more bang for your bucks?)

Quality domain 1: Access• In time: waiting times for contact & treatment

i.e. was treatment initiated within 18 weeks of referral?

• in space: what was your DNA rate for new and for follow ups?

Hands up ifYour service has this data

Your service can get some of this data

Some suggestions to measure timely access( treatment within 18 weeks is a right under the NHS constitution)

• Monitor RTT for 3 or 4 basic conditions e.g.• ADHD: treatment with medication/access to

formal behavioural management• Constipation: treatment with laxatives• Epilepsy: time to treatment with drugs• Cerebral palsy: access to physiotherapy• ASD: time to diagnosis or formulation

Did Not Attend ( was not brought)• Is your personal rate better or worse than the

service average?• Hands up if you know

• If your follow up DNA rate is worse than your new DNA rate, what might it mean?

Apr-2011

May-2011

Jun-2011

Jul-2011

Aug-2011

Sep-2011

Oct-2011

Nov-2011

Dec-2011

Jan-2012

Feb-2012

Mar-2012

6.00%

7.00%

8.00%

9.00%

10.00%

11.00%

12.00%

13.00%

14.00%

15.00%

16.00%

17.00%

18.00%

19.00%

20.00%

21.00%

DNA Rates by Month 2011/12 (%)

NewFollow UpAll

Apr-2011

May-2011

Jun-2011

Jul-2011

Aug-2011

Sep-2011

Oct-2011

Nov-2011

Dec-2011

Jan-2012

Feb-2012

Mar-2012

6.00%7.00%8.00%9.00%

10.00%11.00%12.00%13.00%14.00%15.00%16.00%17.00%18.00%19.00%20.00%21.00%

DNA Rates by Month 2011/12 (%) with trend lines

NewLinear (New)Follow UpLinear (Follow Up)Linear (Follow Up)AllLinear (All)

f/up

all

new

Quality domain 2 :Effectiveness

• Interpersonal: did the patient like the care?• Hands up if you have examples in your service

• Technical: did the care work i.e. make the patient better in some way?

• Hands up if you have examples in your service

Interpersonal effectivenessthe human dimension of outcomes

• Parent/ carer surveys• child satisfaction surveys• surveys of children ,carers ,& social workers

after CSA & NAI examinations• surveys of CYPs after LAC assessments• SAIL audit of clinic letters by peers, GPS and

CYP/ carers.

Examples with data

• 90% of children aged 8 years and above felt the doctor had listened to them

• 95% of social workers attending NAI examinations felt the doctors’ attitude was professional

• 85% of of parents of CYP undergoing CSA examinations felt their child had been treated sensitively

• Only 70% of clinic letters were felt by the GP auditor to be well structured

Technical effectiveness: the elusive Holy Grail of medicine

• We must look & strive for it

• Name one condition each– in which to expect an improvement– In which to expect stability– In which to expect worsening

• Could the service record this?

Improved32%

Same (no improvement)24%

Stable no improvement expected)

21%

Worse11%

Unknown13%

09/10 condition status by NHS number Distinct Count

Some suggestions for outcomes( measure only what you can influence)

• Improved/ worse/ stable/ unchanged are very basic but valid patient/ clinician reported outcomes

• For specific conditions purpose specific scales can and should be used

• Conners/ SDQs/ Honoscas for mental health• Paediatric QL/ CPQL for physical/ complex cases• Family stress Questionnaires • Report % with improved scores• Work is underway to define better measures

Quality domain 3: EquityThe uniqueness of community based paediatrics

( our unique selling point)

• Reducing heath inequalities• More care for the less equal• Reversing the inverse care Law

• Hands up if you think your service can show it does this

Suggestions to evidence a search for equity

• Ethnicity monitoring (ask)• Deprivation quintile monitoring ( postcode)• Disability status monitoring ( record)• other vulnerability factors

• For referrals, activity ( e.g. DNA rates) & all outcomes

Allied Health Prof essionalCAMHS

Education

GP

Health Visitor/School Nurse

Hospital/Community Paeditrician

No Data

OtherPolice

Self /Parent

Social Serv icesSpecialist

Nurses

Unknown

Allied Health Prof essional 3.7%CAMHS 1.2%Education 17.8%GP 20.8%Health Visitor/School Nurse 25.5%Hospital/Community Paeditrician 6.0%No Data 8.3%Other 1.2%Police 1.5%Self /Parent 3.6%Social Serv ices 3.2%Specialist Nurses 0.6%Unknown 6.7%Total: 100.0%

Total New Referrals by Referral Source

Are all referrals treated equally regardless of source?( excluding section 47 , LAC & SEN)

Special Educational Needs SEN

Looked After Children L

Child Protection Register/ Plan CPR

Children in Need - Designated N

Travellers/Asylum/Refugees TAR

Youth Offending Team YOT

Y.P. who sexually abuse others YPSAO

Interpreter Needed I

Sudi / Coni SUDI

Post Adoption PA

School Attendance Problem SAP

Common Assessment  

Framework CAF

Runaway RUN

SPECIAL CATEGORIESupto 4 entriesSpecial categories

upto 4 entries

SPECIAL CATEGORIES

Do you record vulnerability factors?

50% of the total caseload of about 4000 nhs numbers has at least ONE vulnerability factor/ special category ( 11/12 data)

129147

117

66

166

56

72

1956

48

Child Protection Register/ PlanChildren in Need - DesignatedCommon Assessment FrameworkInterpreter NeededLooked After ChildrenPost AdoptionSchool Attendance ProblemSpecial Educational NeedsTravellers/Asylum/RefugeesYouth Offending Team

Does your service record ethnicity? if yes,Does the case load reflects the ethnicity of the background

population

white british; 3467; 85%

BEM; 564; 14%

not stated; 61; 1%

white britishBEMnot stated

Breakdown of black & ethnic minority groups

Bangla

deshi

Black A

frican

Black C

aribbea

n

Black O

ther

ChineseIndian

Mix/white

& Asia

n

Mix/white

& blac

k/Afri

can

Mix/white

& blac

k/Cari

bbean

Mixed/O

ther

Other Asia

n

Other eth

nic gro

up

Pakist

ani

White

Irish

White

Other

0

20

40

60

80

100

120

140

160

180

426 18 10 4

76

33 24

114

3614 17

162

3

93

17109 13

15 266

105

29

143

289

23

99

2570

@30% of nhs numbers have parental factors 09/10 (actual numbers)

Childhood abuse

Diability: Learning

Disability: Physical

Disability: Sensory Im-pairment

Illness: Mental

Illness: Physical

Known history of child abuse

Known history of violence

Other

Period in care during childhood

Problem drinking/drugs

none ( approximate)

Vulnerability factors due to parental problems

Deprivation & caseload: Quintile breakdown of caseload by NHS numbers quintile 1 most deprived, IMD 2007

2012 caseload figures

(Blank) 1 2 3 4 5 Unknown0

200

400

600

800

1000

1200

quintile Fiscal Calendar 2008quintile Fiscal Calendar 2009quintile Fiscal Calendar 2010quintile Fiscal Calendar 2011quintile Fiscal Calendar 2012

Deprivation & diagnoses:Quintile spread of ADHD on medication & definite ASD

vz Downs 2012caseload

(Blank) 1 2 3 4 5 Unknown0

20

40

60

80

100

120

140

160

180

ADHD on medicationDefinite Autistic Spectrum DisorderDowns Syndrome

Quality domain 4 Efficiency: getting there faster and probably cheaper

• what % of referrals are accepted?• If less than 90% , do you know why?• Is information at the time of referral complete

enough to accept?• If no, why not?• How much time before the information is

obtained?• Did you really need to accept the referral?

Was this appointment needed?

• Children seen once & discharged• exclude statutory work• exclude ASD tier 3 clinic• 20% of new cases• increasing waiting times• supposedly complex caseload• ? Deprivation profile?

Seen once & discharged

• Analysed for referral source• Analysed for reason• analysed per doctor• analysed per quintile• ( 50%more disabled children in deprived

quintiles)• More deprived children were discharged

Reducing seen once & discharged( why were we discharging twice as many deprived children as

affluent ones?)

Efficiency: some suggestions in getting there faster and probably cheaper

• Number of appointments to diagnosis of ASD• Rate limiting step?• Reducing the DNA rates while “minding the

quintile gap”• Reducing inappropriate follow up e.g. ASD or

LD with no medically treatable comorbidity• Reducing inappropriate seen once &

discharged

Understanding numbers children vz contacts

hands up if you can tell me• How many contacts did you have last year?• Split new: follow up?

• How many individual children did you see?• split new: follow up?

New and follow up successful activity over the last 4 years

Behaviour Development / Special Needs

General Paed/Physical Soiling/Constipation Wetting0

100

200

300

400

500

600

700

800

900

1000

707

814

412

61 56

867

740

268

21 14

2009-102010-112011-12

NEW children by main pathway

Follow up children ( not contacts) by main pathway

Behaviour Development / Special Needs General Paed/Physical Soiling/Constipation0

200

400

600

800

1000

1200

1400

1600

591

1,050

354

90

650

1,049

343

103

942

1,173

470

111

1,116 1,111

449

137

1,337

1,168

365

102

2007-82008-92009-102010-112011-12

follow up Contacts for behaviour

Attended

CYP/P

invit

ed but d

id not come

CYP/P

not exp

ected

CYP/P

presen

t

Planned

Multidisc

iplinary

Case Disc

ussion

Tel. C

ontact w

ith CYP

/pare

nt0

500

1000

1500

2000

2500

744

3

19443 57 116

2143

5

20177 4

816Fiscal Calendar 2008Fiscal Calendar 2009Fiscal Calendar 2010Fiscal Calendar 2011Fiscal Calendar 2012

Increase in adhd on medication from229 children in 08/09 to 502 in 11/12

mostly in deprived quintiles

Increase in asd caseload from 402 children in 08/09 to 742 children in 11/12. also skewed

towards deprived quintiles

In conclusion

• Information is power• It is easy to get if you know how• It is easy to use if you know how

• I hope you now know how!• lots of help on the BACCH website• BACCH informatics email group

In your packs

• powerpoint printout• Norwich 50 list from Dr Anastasia Bem• 50 commonest diagnostic codes• as a clinic list with contact codes• template for individual caseload analysis

Any questions?