Crossing the boundaries implementing a regional rheumatic fever database

Auckland District Health Board
Welcome Haere Mai | Respect Manaaki | Together Tūhono | Aim High Angamua
Crossing the boundaries:
Overcoming the challenges to developing a regional solution for
management of patients with Rheumatic fever
Greg Williams
& Nathan Billing

Auckland District Health BoardWelcome Haere Mai | Respect Manaaki | Together Tūhono | Aim High Angamua
Prof Diana Lennon ONZM
• Plunket Woman of the Year (1992)
• Fellow of the Infectious Diseases Society of America - a peer-
reviewed elevation based on scholarly achievements and leadership
(1994).
• Officer of the New Zealand Order of Merit (2005) for services to
science and health
• Outstanding Kidz First Achievement Gold (2006) for meningococcal
work
• Hood Fellowship – University of Auckland (2007)
• Dame Joan Metge Medal of the Royal Society of New Zealand (2008)
• Vice Chancellor’s Medal for Commercialisation – University of
Auckland (2013)
• Outstanding Kidz First Achievement Silver (2015) for school-based
rheumatic fever prevention work
• National Hauora Coalition Award (2015)

The challenge #1 – the disease
Rheumatic fever…
• Caused by antibody mediated response to Group A
Streptococcal infection
• Can cause severe heart damage
• After a 1st episode, a 2nd episode more likely to cause
worse heart damage
• Established intervention for secondary prevention
(monthly injections with penicillin)
• There’s still much we do not know

Patients require prophylaxis injections
every 28 days for up to 10 years or
to the age of 21 years or ongoing

The challenge #2 – the barriers
• In NZ, affects Maori and Pacific people almost exclusively
• Correlated with poverty/overcrowding/barriers to
accessing health care
• Almost unheard of in other OECD countries
• Difficult to diagnose
• Mobile population (frequent change of residence) often
across DHB boundaries

How is New Zealand doing?
Source National minimum dataset https://www.health.govt.nz/our-work/diseases-and-conditions/rheumatic-fever/reducing-rheumatic-fever

First episode rheumatic fever hospitalisations,
annual rate per 100,000, Māori and Pacific people, 2011–2017

First episode Rheumatic fever
cases by District Health Board
Auckland Metro
82 cases
Rest of New Zealand
54 cases
Source: https://surv.esr.cri.nz/PDF_surveillance/RheumaticFever/Rheumaticfeverbi-annualreportJuly2016-June2017.pdf

Patients Receiving Active Prophylaxis
Under 19 years 222 174 67
Over 19 years 94 406 69
Total Number of
patients 316 580 136

The challenge #3 – data and process
1. Reliably detect, track, and treat (long term) affected
patients
2. Better understand Rheumatic Fever in NZ to better
prevent it
3. Work across DHBs to achieve 1. and 2.

1. Allocation Boxes
• Sleeves are filed in date order
(1st to 31st)
2. Charts
• Chart must be pulled to go with the
sleeve to administer medication legally.
3. Allocation to DN
• Sleeve and chart are allocated by CNC to specific areas
and with other types of workload i.e. not just RF
patients are seen within the daily workload of each DN.
4. Administering Medication
• Completion of Medication Chart pre and post patient
appointment.
5. Instructions for Filing
• DN Completes a calendar strip to indicate if
injection was given and if given when next
planned contact will be.
• Online documentation is also completed.
6. Administration Team
• DN places completed sleeve in allocated area
(above) for Admin to collect.
• Admin enter details into MOH reporting
Spreadsheet.
• Admin file the sleeve into Allocation Boxes (1)

Previously…
• Each DHB has its own processes
• Register of patients for Auckland region kept on Access
database (standalone)
• Paper forms

Goals of replacement
• Integrate with existing clinical platform, with upgrade path
for future
• Improve/automate monitoring, notification, tracking and
reporting of disease/treatment
• Support research
• Support delivery of medication (right time, right patient,
reliably)
• Consistent across region

Tensions
Minimum necessary info VS Maximum useful info
Unified workflow VS Local workflows

Real world solution
• Regional: acknowledge differing priorities, differing
processes
• Pragmatic: use what tools are available
• Momentum: relentless clinical & IT leadership
• Efficient: support multiple functions (clinical, reporting)
• UX: works for all users

Real world solution
• Orion CWS (Clinical Workstation)
• Learning curve, and time requirement:
has needed local champions and firm encouragement

Current Processes are complicated

Overview of solution
Enrol Register Consent & Order Nursing
Add to
pathway
Acute vs.
Non Acute
Acute
Case Review
ARPHS
notification
Registration
form
Consent
Details
Order
Details
Clinical
Review form
Data captured within all forms made available in near real
time for searches for all users
Scanned pdf consents and
orders attached to form
One nursing form for
each IM injection
Administration
DetailsAdministration
Details

Utility of searches
• Searches provide users with real time information
• Information pulled from various forms within system
• These searches enable
– nurses to track patients due dates in near real time.
– specialists keep track of next f/up date
• Because all patients are within one database no one
can fall through the cracks

Specialist follow up search:
Every patient has one specialist follow up form
and one or more specialties following them up
All shown in this search
Nursing Dashboard search:

Synopsis and future
• Using existing tools for case acquisition, complex care
coordination/delivery, tracking, reporting, research, quality
assurance
• Change management across DHBs
• Driven by clinicians, with significant IT support
• One day fully clinically coded (SNOMED-CT), fully
interoperable module of a wider clinical suite fit for
different conditions, using tools that are familiar to all.

Summary
• Problem – individual systems don’t talk to each other to
keep. Patients can be transient and require prophylaxis
wherever they are in the country.
Potential solutions:
• Plan A – Centrally developed National register –
who/how/when?
• Plan B – Develop regional solution at low cost with a
potential road map to a National register

Plan A Progress
Midland Region Rheumatic fever group 10
North Island DHB’s Northland to Hawkes Bay
Pushing for a National Register
• Urgently need to coordinate secondary
prophylaxis delivery
• Need to define minimum dataset
• Need a web based portal to make this
possible
No one can fall through the cracks if all in one register

Acknowledgements
ADHB clinicians WDHB clinicians CMDHB team ARPHS clinicians
Diana Lennon,
Michael Shepherd,
Alison Leversha,
Miriam Wheeler,
Lesley Voss,
Elisabeth Wilson,
Faith Mahony,
Robyn Buchanan.
Rebecca Somerville,
Heather Nelson,
Jill Otene.
Philippa Anderson,
Belinda Paku,
Ann Stevens,
Catherine Jackson,
Josephine (Aumea)
Herman
ADHB Health Information Technology group
• Main CWS Development and build work undertaken by Thomas Glynn.
Joanne Bos, Sandra Katterns, Clinton Arnold, Catharina Lewis, Rene
Groenendyk, Nathan Billing

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