Transcript Document

Case Study:
Results Based Accountability in
Epilepsy Services
Ruth Jordan – Project Manager Cardiff CCM
Demonstrator
Phil Smith – Consultant Neurologist
The Welsh Epilepsy Unit
The Welsh Epilepsy Unit is a tertiary referral centre for
specialist epilepsy services in South Wales. The
immediate catchment population covered is 700,000,
but many referrals are also taken from elsewhere in
Wales. The Unit offers a multidisciplinary approach to
epilepsy care and offers a very broad range of
services to people with epilepsy, their families and
carers.
Epilepsy Service Development Directive
The dilemma……
How do we know that the patient is better
off just because we have achieved the
targets? How do we keep their
outcomes at the centre of what we do
rather than just focus on achievement of
the process?
Results Based Accountability
Fiscal Policy Studies
Institute
Santé Fe, New Mexico
www.resultsbasedaccountabilty.com
www.raguide.org
www.resultsleadership.org (publications)
Results Based Accountability
A disciplined way of thinking and taking action which
can be used to improve the quality of life in
communities and the performance of services
(Mark Friedman)
• Turns talk about outcomes quickly into actions
which improve those outcomes
• Embeds performance management into planning
and delivery
• Explains both collaborative and service
accountability and how they fit back together
Results Based Accountability
is made up of two parts:
Population Accountability
about the well-being of
WHOLE POPULATIONS
for neighbourhoods – districts – regions - countries
Performance Accountability
About the well-being of
CLIENT POPULATIONS
for projects – agencies – service providers
The 7 Performance Accountability
Questions
1.
2.
3.
4.
Who are our customers?
How can we measure if our customers are better off?
How can we measure if we are delivering services well?
How are we doing on the most important of these
measures? IS THIS OK?
5. Who are our partners that have a role to play in doing
better?
6. What works to do better, including no-cost and low-cost
ideas?
7. What do we propose to do?
Performance Turning The Curve Report
The programme, service system or project being performance
managed
The customers: i.e. the people whose lives are affected (for better or
worse) by the actions of the programme
The priority PERFORMANCE MEASURE derived in particular from the
“How well” and “Better Off” questions
The PERFORMANCE MEASURE BASELINE made up of the historical
data, the projected forecast (if nothing is done) and showing the curve
we want to turn
The STORY BEHIND THE BASELINE: What we know about the
factors driving the baseline. What are the causes/factors at work? What
is our understanding of what’s driving our performance?
What are the gaps in our knowledge (our DATA DEVELOPMENT
AGENDA)? What do we need to know to inform our action plan?
Who are the KEY PARTNERS with a role to play in Turning the Curve?
These could be internal departments, service users, suppliers etc.
WHAT WOULD IT TAKE TO TURN THE CURVE? What’s our best
thinking on this, our best hunches? What would work in our
organisation? Always include at least one “No Cost/Low Cost” idea and
an “Off The Wall” idea (to generate creative thinking)
What we did…..
• Introductory training on RBA for members of the Epilepsy
Steering Group
• Which “customer” group are our first priority?
Patients with a first suspected seizure or unexplained
blackout
• Facilitated workshops to work through 7 performance
accountability questions
• Baselined data for selected performance measures
• Service improvement in line with action plan
• Repeated for next “customer” group
Women taking medication for epilepsy between the ages of
14-45 who may become or who are pregnant
First Seizure Patients
THE WELSH EPILEPSY UNIT
Service Description: The Welsh Epilepsy Unit is a tertiary referral centre for specialist epilepsy services in
South Wales. The immediate catchment population covered is 700,000, but many referrals are also taken from
elsewhere in Wales. The Unit offers a multidisciplinary approach to epilepsy care and offers a very broad range of
services to people with epilepsy, their families and carers.
DEFINED SERVICE USERS
Patients with a first suspected seizure or unexplained blackout
HEADLINE PERFORMANCE MEASURES
DATA DEVELOPMENT AGENDA
1.
2.
3.
4.
1. % on inappropriate treatment
2. % have clinic letters sent within one week of clinic
3. Why patients DNA first seizure clinic
%
%
%
%
seen by a specialist within 2 weeks
DNA first seizure clinic
have diagnostic tests within 4 weeks
follow the correct pathway
HOW ARE WE DOING?
% S een b y a S p eci al i st w i t hi n 2 W eeks
% ha v e d i a g no s t i c t e s t s w i t hi n 4 w e e k s
% D N A F i r s t S e i z ur e C l i ni c
30%
25%
35%
B as el i ne
15%
100%
30%
25%
20%
B as el i ne
20%
80%
25%
B as el i ne
P r edi c t i on
15%
P r edi c t i on
C ur v e t o t ur n
10%
C ur v e t o t ur n
5%
0%
2007
2008
2009
2010
2011
2012
P r edi c t i on
15%
C ur v e t o t ur n
10%
P r edi c t i on
40%
C ur v e t o t ur n
5%
5%
20%
0%
0%
0%
2007
2008
2009
2010
2011
2012
STORY BEHIND THE BASELINES
Clinic capacity – 1 clinic per week with 5 patient slots
Unpredictable demand
Small MDT – unable to cover absence to prevent clinic cancellation
Low frequency of clinics causes delay if appointment not suitable
Clinic booked by Epilepsy Unit admin staff – if admin staff on leave clinic slots not
filled
Consultant triage’s fax referrals – delay if unavailable
Patient anxiety
Stigma attached to Epilepsy
Patients put off by unit name – diagnosis seems pre-determined
Concerns re implications e.g. diving
B as el i ne
60%
20%
10%
% f o l l o w co r r ect p at hw ay
2007
2008
2009
2010
2011
2012
2007
2008
2009
2010
2011
2012
PARTNERS WHO CAN HELP US DO BETTER
Emergency Unit/MEAU, Radiology, Neurophysiology, Medical records, A&C staff,
Consultants, Ambulance Trust, Cardiology, Psychology, Care of the Elderly,
Neurosurgery, Prison, Voluntary Sector, CELT, Practice Nurses, Family members/
witnesses, Drug and Alcohol Services, Occupational Health, Referral Management
Centre, Obstetrics.
WHAT WE PROPOSE TO DO TO IMPROVE PERFORMANCE
 Develop nurse led Emergency Unit assessment service
 Develop nurse led first seizure clinics
 Enable specialist nurse referral for EEG
 Change the name of the Epilepsy unit
THE WELSH EPILEPSY UNIT
Service Description: The Welsh Epilepsy Unit is a tertiary
South Wales. The immediate catchment population covered i
elsewhere in Wales. The Unit offers a multidisciplinary approac
services to people with epilepsy, their families and carers.
DEFINED SERVICE USERS
Patients with a first suspected seizure or unexplained blackout
HEADLINE PERFORMANCE MEASURES
1.
2.
3.
4.
%
%
%
%
seen by a specialist within 2 weeks
DNA first seizure clinic
have diagnostic tests within 4 weeks
follow the correct pathway
HOW ARE WE DOING?
% S een b y a S p eci al i st w i t hi n 2 W eeks
25%
% DNA Fi
30%
HEADLINE PERFORMANCE MEASURES
1.
2.
3.
4.
%
%
%
%
seen by a specialist within 2 weeks
DNA first seizure clinic
have diagnostic tests within 4 weeks
follow the correct pathway
HOW ARE WE DOING?
% S een b y a S p eci al i st w i t hi n 2 W eeks
% D N A F i r s t S e i z ur e C l i ni c
30%
25%
25%
20%
15%
B as el i ne
20%
B as el i ne
P r edi c t i on
15%
P r edi c t i on
C ur v e t o t ur n
10%
C ur v e t o t ur n
10%
5%
5%
0%
0%
2007
2008
2009
2010
2011
2012
2007
2008
2009
2010
2011
2012
STORY BEHIND THE BASELINES
Clinic capacity – 1 clinic per week with 5 patient slots
Unpredictable demand
Small MDT – unable to cover absence to prevent clinic cancellation
Low frequency of clinics causes delay if appointment not suitable
Clinic booked by Epilepsy Unit admin staff – if admin staff on leave clinic slots not
filled
Consultant triage’s fax referrals – delay if unavailable
Patient anxiety
Stigma attached to Epilepsy
Patients put off by unit name – diagnosis seems pre-determined
2. % have clinic letters sent within one week of clinic
3. Why patients DNA first seizure clinic
% ha v e d i a g no s t i c t e s t s w i t hi n 4 w e e k s
35%
% f o l l o w co r r ect p at hw ay
100%
30%
80%
25%
B as el i ne
B as el i ne
60%
20%
P r edi c t i on
15%
C ur v e t o t ur n
10%
P r edi c t i on
40%
C ur v e t o t ur n
20%
5%
0%
0%
2007
2008
2009
2010
2011
2012
2007
2008
2009
2010
2011
2012
PARTNERS WHO CAN HELP US DO BETTER
Emergency Unit/MEAU, Radiology, Neurophysiology, Medical records, A&C staff,
Consultants, Ambulance Trust, Cardiology, Psychology, Care of the Elderly,
Neurosurgery, Prison, Voluntary Sector, CELT, Practice Nurses, Family members/
witnesses, Drug and Alcohol Services, Occupational Health, Referral Management
Centre, Obstetrics.
WHAT WE PROPOSE TO DO TO IMPROVE PERFORMANCE
 Develop nurse led Emergency Unit assessment service
 Develop nurse led first seizure clinics
 Enable specialist nurse referral for EEG
 Change the name of the Epilepsy unit
Action Plan
• Develop nurse led Emergency Unit
assessment service
• Develop nurse led first seizure clinics
• Enable specialist nurse referral for EEG
• Change the name of the Epilepsy unit
It’s early days, but…….
It’s early days, but…….
Women who may become or who are
pregnant
Women who may become or who are
pregnant
THE WELSH EPILEPSY UNIT
Service Description: The Welsh Epilepsy Unit is a tertiary referral centre for specialist epilepsy services in
South Wales. The immediate catchment population covered is 700,000, but many referrals are also taken from
elsewhere in Wales. The Unit offers a multidisciplinary approach to epilepsy care and offers a very broad range of
services to people with epilepsy, their families and carers.
DEFINED SERVICE USERS
Women taking medication for Epilepsy between the ages of 14 – 45 who may become or who are pregnant
HEADLINE PERFORMANCE MEASURES
DATA DEVELOPMENT AGENDA
1.
2.
3.
4.
1.
2.
3.
4.
%
%
%
%
prescribed optimum medication
on polytherapy
having major Epilepsy related convulsions during pregnancy
have pre-conception counselling
%
%
%
%
receive consistent and correct information
professional feel confident to provide service independently
follow the correct pathway
feel fully informed
HOW ARE WE DOING?
% o n p o l y t he r a p y
% P r e s c r i b e d O p t i mum M e d i c a t i o n
% ha v i ng ma j o r E p i l e p s y r e l a t e d
c o nv ul s i o ns
% have pre -conce ption couns e lling
30%
100%
25%
80%
60%
40%
20%
12%
B as el i ne
20%
Baseline
P r edi c t i on
15%
Pr edic t ion
C ur v e t o t ur n
10%
Cur v e t o t ur n
5%
0%
2008
2009
2010
2011
2012
80%
10%
8%
Baseline
6%
Pr edic t ion
40%
Cur v e t o t ur n
20%
4%
2%
0%
2007
100%
2008
2009
2010
2011
2012
STORY BEHIND THE BASELINES
Some people can’t have their medication changed
Access to specialist knowledge
Social issues e.g. driving – have to stop if medication changed
People anxious to change medication
Pregnancy related problems can cause mal-absorption of drugs
Increased tiredness increases the risk of seizures
Conflict of decreasing medication or decreasing seizures
Lack of knowledge and awareness for patients/schools/primary care/non-specialists/obstetrics
Denial that problems may happen
Time and people resource
Not recognised practice
Unplanned pregnancy
Previous bad experiences
Knowledge of services available
Changed metabolism leading to lower medication levels
Fear of medication side effects
Increasing polytherapy may decrease side effects
Worried to initiate change
Pr edic t ion
Cur v e t o t ur n
0%
0%
2007
Baseline
60%
2007
2008
2009
2010
2011
2012
2007
2008
2009
2010
2011
2012
PARTNERS WHO CAN HELP US DO BETTER
Obstetrics, Midwifery (Consultant led and Midwife led), GP, Practice Nurses,
Paediatricians, Paediatric Epilepsy Nurses, Epilepsy Specialist Nurses, Neurologists,
Learning Disability Team, Parentcraft, School Nurses, Social Services, Pharmacy,
Voluntary Sector, Epilepsy Pregnancy Register, Managed Clinical Network,
Occupational Health, Obs & Gynae Management, Psychiatry, Genetic Counselling
WHAT WE PROPOSE TO DO TO IMPROVE PERFORMANCE
 Implement the education package for partners
 Define the correct pathway
 “Three key messages” for professionals
 Patient information sheets/cards
 Link with Epilepsy Pregnancy Register – increase benefit to patients by providing info/
newsletter
THE WELSH EPILEPSY UNIT
Service Description: The Welsh Epilepsy Unit is a tertiary referral centre for special
South Wales. The immediate catchment population covered is 700,000, but many referr
elsewhere in Wales. The Unit offers a multidisciplinary approach to epilepsy care and offe
services to people with epilepsy, their families and carers.
DEFINED SERVICE USERS
Women taking medication for Epilepsy between the ages of 14 – 45 who may become or w
HEADLINE PERFORMANCE MEASURES
1.
2.
3.
4.
%
%
%
%
prescribed optimum medication
on polytherapy
having major Epilepsy related convulsions during pregnancy
have pre-conception counselling
HOW ARE WE DOING?
% o n p o l y t he r a p y
% P r e s c r i b e d O p t i mum M e d i c a t i o n
30%
100%
25%
80%
60%
40%
20%
12
B as el i ne
20%
Baseline
P r edi c t i on
15%
Pr edic t ion
C ur v e t o t ur n
10%
Cur v e t o t ur n
5%
0%
2008
2009
2010
2011
2012
8
6
4
2
0%
2007
10
0
2007
2008
2009
2010
2011
2012
1.
2.
3.
4.
%
%
%
%
receive consistent and correct information
professional feel confident to provide service independently
follow the correct pathway
feel fully informed
% ha v i ng ma j o r E p i l e p s y r e l a t e d
c o nv ul s i o ns
% have pre -conce ption couns e lling
100%
12%
80%
10%
8%
Baseline
6%
Pr edic t ion
40%
Cur v e t o t ur n
20%
4%
2%
Baseline
60%
Pr edic t ion
Cur v e t o t ur n
0%
0%
2007
2008
2009
2010
2011
2012
2007
2008
2009
2010
2011
2012
PARTNERS WHO CAN HELP US DO BETTER
Obstetrics, Midwifery (Consultant led and Midwife led), GP, Practice Nurses,
Paediatricians, Paediatric Epilepsy Nurses, Epilepsy Specialist Nurses, Neurologists,
Learning Disability Team, Parentcraft, School Nurses, Social Services, Pharmacy,
Voluntary Sector, Epilepsy Pregnancy Register, Managed Clinical Network,
Occupational Health, Obs & Gynae Management, Psychiatry, Genetic Counselling
WHAT WE PROPOSE TO DO TO IMPROVE PERFORMANCE
 Implement the education package for partners
 Define the correct pathway
 “Three key messages” for professionals
 Patient information sheets/cards
 Link with Epilepsy Pregnancy Register – increase benefit to patients by providing info/
newsletter
Action Plan
•
•
•
•
•
Define the correct pathway
Implement an education package for partners
“Three key messages” for professionals
Patient information sheets/cards
Link with Epilepsy Pregnancy Register –
increase benefit to patients by providing
info/newsletter
Lessons Learnt
• RBA can provide a framework to ensure patient
outcomes are the focus and not processes.
• It provides a vehicle for engaging all stakeholders
• Empowered the team to feel committed towards
service development
• Provides a framework to get from discussion to action
quickly whilst still providing direction
• Training is essential
• Challenges the data we collect
Thank You!
Any Questions?