Why on earth would I want data:
the use & misuse of health informatics
Dr Fawzia Rahman
First BACCH trainees’ day,
RCPCH, 19th April 2013
Learning aims
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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 seen
1.
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3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
30.
eating disorder
Conduct disorder
tic disorder
behavioural & emotional disorder unspecified
sleep disorder
self harm
Autistic spectrum disorder
Attention deficit hyperactivity disorder
behaviour problems related to learning disability
moderate mental retardation
severe mental retardation
Disorder of speech and language development
Specific developmental disorder of motor function
Constipation
Metabolic disorders
Congenital malformation
Chromosomal abnormality
Down syndrome
Epilepsy
primary disorders of muscle
Cerebral palsy
congenital malformation of brain
neurological problem NOS
Low vision, both eyes
Conductive hearing loss
Sensory neural hearing loss, bilateral
Neglect
Non accidental injury
Child sexual abuse
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
Psychosocial
dysfunction
3%
void
1%
physical
24%
no diagnosis
4%
NAD
1%
behaviour
41%
learning
24%
child protection
2%
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 quality
Four domains of quality
2 matter to individuals
2 matter to populations
•
• Equity
is care fairly distributed?
Access
can you get health care?
• Effectiveness
do you like it?
(interpersonal)
does it work?
( technical)
• 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 if
Your 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?
DNA Rates by Month 2011/12 (%)
21.00%
20.00%
19.00%
18.00%
17.00%
16.00%
15.00%
14.00%
13.00%
New
12.00%
Follow Up
11.00%
All
10.00%
9.00%
8.00%
7.00%
6.00%
DNA Rates by Month 2011/12 (%)
with trend lines
New
Follow Up
All
21.00%
20.00%
19.00%
18.00%
17.00%
16.00% new
15.00%
all
14.00%
13.00% f/up
12.00%
11.00%
10.00%
9.00%
8.00%
7.00%
6.00%
Linear (New)
Linear (Follow Up)
Linear (All)
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 effectiveness
the 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?
09/10 condition status
by NHS number Distinct Count
Unknown
13%
Improved
32%
Worse
10%
Stable
no
improvement
expected)
21%
Same (no
improvement)
24%
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:
Equity
The 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
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•
•
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Ethnicity monitoring (ask)
Deprivation quintile monitoring ( postcode)
Disability status monitoring ( record)
other vulnerability factors
• For referrals, activity ( e.g. DNA rates) & all
outcomes
Are all referrals treated equally regardless of source?
( excluding section 47 , LAC & SEN)
Total New Referrals by Referral Source
Education
CAMHS
Allied Health Prof essional
GP
Unknown
Specialist
Social
Serv ices
Nurses
Self /Parent
Police
Other
No Data
Hospital/Community Paeditrician
Health Visitor/School Nurse
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%
Do you record vulnerability factors?
Special
SPECIAL CATEGORIES
categories
upto 4 entries
upto 4 entries
Special Educational
Needs
Looked After Children
Child Protection Register/
Plan
Children in Need Designated
SPECIAL CATEGORIES
Sudi / Coni
SEN
L
CPR
N
Travellers/Asylum/Refuge
es
TAR
Youth Offending Team
YOT
Y.P. who sexually abuse
others
Interpreter Needed
YPSAO
I
Post Adoption
School Attendance
Problem
SUDI
PA
SAP
Common Assessment
Framework
Runaway
CAF
RUN
50% of the total caseload of about 4000 nhs numbers has at
least ONE vulnerability factor/ special category ( 11/12 data)
48
129
147
117
Child Protection Register/ Plan
66
Children in Need - Designated
166
Common Assessment Framework
Interpreter Needed
56
Looked After Children
72
Post Adoption
School Attendance Problem
Special Educational Needs
Travellers/Asylum/Refugees
1,956
Youth Offending Team
Does your service record ethnicity? if yes,
Does the case load reflects the ethnicity of the background
population
not stated, 61, 1%
BEM, 564, 14%
white british
BEM
not stated
white british, 3467, 85%
Breakdown of black &
ethnic minority groups
180
160
140
120
100
162
80
60
114
93
40
76
20
4
0
26
18
33
10
4
24
36
14
17
3
Vulnerability factors due to parental problems
@30% of nhs numbers have parental factors
09/10 (actual numbers)
17
109 13
Diability: Learning
Disability: Physical
266
15
Childhood abuse
Disability: Sensory
Impairment
105
29
143
Illness: Mental
Illness: Physical
Known history of child
abuse
Known history of violence
289
23
2570
99
Other
Period in care during
childhood
Problem drinking/drugs
none ( approximate)
Deprivation & caseload: Quintile breakdown of caseload by NHS numbers
quintile 1 most deprived, IMD 2007
2012 caseload figures
1200
1000
800
quintile Fiscal Calendar 2008
quintile Fiscal Calendar 2009
600
quintile Fiscal Calendar 2010
quintile Fiscal Calendar 2011
quintile Fiscal Calendar 2012
400
200
0
(Blank)
1
2
3
4
5
Unknown
Deprivation & diagnoses:
Quintile spread of ADHD on medication & definite ASD
vz Downs
2012caseload
180
160
140
120
100
ADHD on medication
Definite Autistic Spectrum Disorder
80
Downs Syndrome
60
40
20
0
(Blank)
1
2
3
4
5
Unknown
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?
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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
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•
•
•
•
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
NEW children by main pathway
1000
900
867
814
800
740
707
700
600
2009-10
500
2010-11
412
2011-12
400
300
268
200
100
61
56
21
14
0
Behaviour
Development / Special General Paed/Physical Soiling/Constipation
Needs
Wetting
Follow up children ( not contacts)
by main pathway
1600
1400
1,337
1200
1,116
1000
1,173
1,168
1,111
1,0501,049
942
2007-8
2008-9
800
2009-10
650
600
2010-11
591
2011-12
470 449
354 343
400
365
200
90 103 111
137
102
0
Behaviour
Development / Special Needs
General Paed/Physical
Soiling/Constipation
follow up Contacts for behaviour
2500
2,143
2000
1500
Fiscal Calendar 2008
Fiscal Calendar 2009
Fiscal Calendar 2010
1000
816
744
Fiscal Calendar 2012
500
194
3
201
5
43
77
57
116
4
0
Attended
Fiscal Calendar 2011
CYP/P invited but CYP/P not expected
did not come
CYP/P present
Planned
Multidisciplinary
Case Discussion
Tel. Contact with
CYP/parent
Increase in adhd on medication from
229 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
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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?