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The Development of a Model of Care for patients with ‘wet’ Age- related Macular Degeneration The EYECU Project Phase 1 REPORT TO INTER-GOVERNMENT & FUNDING STRATEGIES BRANCH OF NSW HEALTH Version: Final Date: September 2011

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Page 1: The EYECU Project - NSW Agency for Clinical Innovation...EYECU PHASE 1 REPORT . EYECU Project_Report for IG&FS Branch NSW Health_Final. 6/47 In Phase 2 Stages 2 and 3 the patient’s

The Development of a Model of Care for patients with ‘wet’ Age-related Macular Degeneration

The EYECU Project Phase 1

REPORT TO INTER-GOVERNMENT & FUNDING STRATEGIES BRANCH OF NSW HEALTH

Version: Final Date: September 2011

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ACKNOWLEDGEMENTS EYECU (Phase 1) a collaborative project undertaken as a clinical redesign project to improve access to care for patients with ‘wet’ Age-related Macular Degeneration (AMD) was a complex multi-layered project which has required the engagement of many stakeholders especially at Sydney/Sydney Eye (SSEH) and the Save Sight Institute (SSI) of the University of Sydney.

SSEH and SSI clinician, clerical and management stakeholders found time in their busy schedules to engage and participate in all stages of the project. Committed senior executive sponsorship and support was provided by Peter McCluskey, Andrew Bernard and Pauline Rumma.

The NSW Health System Performance Improvement Branch, Centre for Healthcare Redesign provided a framework, the learning and the tools to guide the project team whilst the Macular Degeneration Foundation (MDF) ensured that the patient’s voice was heard.

The Agency for Clinical Innovation (ACI) Chief Executive and the clinicians of the Statewide Ophthalmology Service (SOS), the ACI Ophthalmology Network, worked hard to raise the issue with NSW Health over many years.

The Inter-government and Funding Strategies Branch of NSW Health facilitated the purchase of equipment to enable patients with ‘wet’ AMD efficient access to diagnosis, treatment and ongoing management at SSEH/SSI.

The project team, led by Cheryl Moore, worked tirelessly to complete Phase 1 of the project reporting regularly to the Project Steering Committee (below) which guided the project.

Name Role Facility

Peter McCluskey (Chair) Director SSI/ Professor, Ophthalmology University of Sydney

SSI/SSEH

Andrew Bernard General Manager, Northern Hospital Network SESLHD

Pauline Rumma Director of Clinical Services SSEH

Justin Playfair Head, Joint Eye Department SSEH & POWH

Rob Cummins Research & Policy Manager MDF

Caroline Catt Ophthalmology Senior Registrar SSEH

Rob McDonald Ophthalmology Senior Registrar SSEH

Julia Kelly Northern Hospital Network, Head Orthoptics Department SSEH

Carolyn Smith A/Director of Nursing SSEH

Catherine O’Brien A/NUM ED/OPD SSEH

Lesley Thwaites NUM ED/OPD SSEH

Julie Dudley Administrative Officer SSEH

Richard Kowalewski Clerical Supervisor SSEH

Beverly Latham Clinical Nurse Educator (Ophthalmology) SSEH

James Dunne A/ Senior Manager, HSPIB NSW Health

Project Team

Cheryl Moore (Project Lead)

Clinical Nurse Educator (Ophthalmology) SSEH

Sam Fraser-Bell Ophthalmologist (Retina Specialist) SSEH/SSI

Lisa Donnelly Project Officer, HSPIB NSW Health

Jan Steen Executive Director, Statewide Ophthalmology Service ACI

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Table of Contents 1. EXECUTIVE SUMMARY ................................................................................................................5

2. RECOMMENDATIONS .................................................................................................................6

3. BACKGROUND ............................................................................................................................7

4. CLINICAL REDESIGN PROJECT ......................................................................................................9

4.1 PROJECT APPROACH........................................................................................................................... 9 4.2 GOALS AND OBJECTIVES ..................................................................................................................... 9 4.3 PROJECT SCOPE .............................................................................................................................. 10 4.4 SUMMARY OF FINDINGS ................................................................................................................... 10 4.5 ENDORSED SOLUTIONS .................................................................................................................... 14

5. IMPLEMENTATION .................................................................................................................... 15

5.1 MOC FOR ‘WET’ AMD PATIENTS IN SSEH OPD RETINA CLINIC AND THE SSI LIC ...................................... 16 5.2 STAGE 2 IMPLEMENTATION .............................................................................................................. 16 5.3 STAGE 3 IMPLEMENTATION .............................................................................................................. 18 5.4 MEASUREMENT POST IMPLEMENTATION ............................................................................................. 18 5.5 HORIZON SCAN .............................................................................................................................. 18

6. DEMAND FOR TREATMENT OF ‘WET’ AMD ................................................................................ 20

6.1 PREVALENCE OF AMD ..................................................................................................................... 20 6.2 PREVALENT DEMAND FOR TREATMENT OF ‘WET’ AMD ......................................................................... 22 6.3 CAPACITY TO MEET PREVALENT PUBLIC SECTOR DEMAND IN SSEH/SSI .................................................... 23 6.4 FACTORS INFLUENCING DEMAND AT SSEH/SSI .................................................................................... 24 6.5 COMPARISON OF ACTUAL AND PREVALENT DEMAND ............................................................................ 25

7. COST OF MEETING DEMAND ..................................................................................................... 27

8. SUMMARY & RECOMMENDATIONS .......................................................................................... 28

9. REFERENCES ............................................................................................................................. 30

10. ACRONYMS/ ABREVIATIONS ................................................................................................. 30

11. TABLE OF APPENDICES .......................................................................................................... 31

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List of Tables TABLE 1 REDESIGN METHODOLOGY ..............................................................................................9

TABLE 2: IN/OUT OF SCOPE .......................................................................................................... 10

TABLE 3: PREVALENCE RATES FOR VISION LOSS AND BLINDNESS FROM AMD1 .............................. 20

TABLE 4: ESTIMATED NUMBER & PERCENTAGE OF PATIENTS IN AUSTRALIA WITH ‘WET’ AMD (EXCL. BLINDNESS) FOR THREE CLINICAL SCENARIOS ................................................................................... 21

TABLE 5: ESTIMATE OF PUBLIC SECTOR DEMAND FOR TREATMENT OF ‘WET’ AMD (EXCL. BLINDNESS) IN SESLHD & ISLHD IN 2009 ........................................................................................... 23

TABLE 6: ESTIMATED NO. PATIENTS NEEDING PUBLIC TREATMENT AT SSEH BY CLINICAL SCENARIO* 2011-2020 23

TABLE 7: ESTIMATE OF THE NUMBER OF INJECTING CLINICS REQUIRED TO TREAT PUBLIC PATIENTS REQUIRING 9 INJECTIONS PER ANNUM WITH DIFFERENT INJECTING CAPACITY ................................. 24

TABLE 8: CAPACITY REQUIRED FOR THREE DIFFERENT LEVELS OF PREVALENT PUBLIC SECTOR DEMAND IN SESLHD AND ISLHD ....................................................................................................... 25

TABLE 9: LUCENTIS INJECTION DATA – 2009/10 – 2010/11 ............................................................ 26

TABLE 10: COMPARISON OF ESTIMATED PREVALENT DEMAND AND ACTUAL INJECTIONS GIVEN IN 2010/2011 26

List of Graphs GRAPH 1: FIRST PRESENTATION TO TREATMENT FOR A PATIENT WITH ‘WET’ AMD IN 2009/10 – AVERAGE TIME ................................................................................................................................ 11

GRAPH 2: FIRST PRESENTATION TO TREATMENT FOR A PATIENT WITH ‘WET’ AMD IN 2009/10 – STAGES OF THE JOURNEY ACTUAL VS. RECOMMENDED .................................................................... 11

GRAPH 3: PATIENT EXPERIENCE ........................................................................................................ 12

GRAPH 4: PERCENTAGE OF ISSUES CONTRIBUTING TO IDENTIFIED CAUSES ........................................ 13

GRAPH 5: PERCENTAGE OF ISSUES CONTRIBUTING TO LACK OF COORDINATION & INTEGRATION OF PROCESSES & CARE .......................................................................................................................... 13

GRAPH 6: SOLUTIONS APPLIED TO THE CURRENT PATIENT JOURNEY ................................................. 14

GRAPH 7: EYECU IMPLEMENTATION GOVERNANCE STRUCTURE ........................................................ 15

GRAPH 8: ‘ONE STOP SHOP’ MODEL OF CARE ................................................................................... 17

GRAPH 9: PREVALENCE OF VISION LOSS FROM ‘WET’ AMD (EXCL. BLINDNESS) BY NSW LHD (2011 – 2020) FOR 9 INJECTIONS PA .............................................................................................................. 21

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1. EXECUTIVE SUMMARY This report outlines the major activities, findings, endorsed solutions and implementation progress of Phase 1 of EYECU, a Clinical Redesign Project being undertaken at Sydney/Sydney Eye Hospital (SSEH) and the Save Sight Institute (SSI).

EYECU aims to prevent avoidable vision impairment and blindness by improving access to appropriate management for SSEH patients with ‘wet’ (exudative) Age-related Macular Degeneration (AMD).

The project has been undertaken using NSW Health Clinical Redesign Program methodology which involves project initiation, diagnostics, solution design, implementation planning & evaluation phases.

Four organizations i.e. SSEH, the Agency for Clinical Innovation (ACI), SSI and NSW Health have collaborated and provided resources for the redesign project.

Qualitative data to assess the existing situation was collected through 17 individual interviews with clinicians, 5 patient interviews and 4 workshops with approximately 50 participants. Patient and staff interviews yielded 81 issues, 27% of which were administrative and 37% compromised clinical care.

Medical record audit provided quantitative data about the delay in access to care including a very strong case for change i.e. the median time from first presentation to first injection of 49 days (recommended 14 days); a median time from presentation to retina clinic of 21 days (recommended 7 days); majority of patients assessed six monthly despite monthly injections (clinical review recommended prior to each injection).

Preliminary estimates of prevalence of ‘wet’ AMD (excl. blindness), demand and need for public treatment and the required capacity to meet this demand have been made for three different clinical practice scenarios i.e. 6, 9 or 12 injections per annum

16% of SESLHD & ISLHD prevalent population was treated at SSEH in 2009. The capacity to meet increasing prevalent demand was estimated for 20% and 25% of the prevalent population of SESLHD and ISLHD for 2011 to 2020. These different scenarios were considered to capture LHD resident patients moving from private to public treatment with the implementation of a new model of care.

Recently provided 2010/2011 data identify an almost 50% increase in injections given. A comparison of estimated prevalent public demand and actual public demand for 2010/2011 indicates that actual demand is greater than prevalent demand by 39%.

Three injecting clinics per week are required at SSEH/SSI as soon as possible to accommodate this increase in actual demand and there is a need to identify demand external (patient inflows) to SESLHD and ISLHD.

It is anticipated that the privately referred non-inpatient (PRNIP) funding model will cover the cost of the medical retina and injecting clinics.

A broad look at future demand for medical retinal clinics identifies that public hospital outpatient eye services will need to be in a position to treat additional public patients with retinal diseases as the treatment for ‘wet’ AMD is used for other retinal diseases. The literature reports that intra-vitreal injections such as Lucentis will /are being used for Diabetic Retinopathy.

Phase 2 Stage 1 is underway with 21 endorsed solutions currently being implemented.

Successful implementation of Phase 2 Stage 1 will trigger the purchase of an Optical Coherence Tomography (OCT) for SSEH.

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In Phase 2 Stages 2 and 3 the patient’s experience will be improved with the development of a model of care in the OPD clinics at Prince of Wales Hospital (POWH) to treat patients referred to POWH retina specialists.

2. RECOMMENDATIONS

I. The development and three stage implementation of a model of care for ‘wet’ AMD

patients in SSEH/SSI i.e. in the existing situation, in new medical retina clinics both in current locations and in a planned Bicentenary Institute.

II. That the split configuration of care for POWH patients with ‘wet’ AMD is reviewed and that these patients referred to POWH medical retina specialists are treated and managed at the POWH.

III. That SSEH/SSI provide three injecting clinics as soon as possible and reconsider capacity requirements as soon as the audit of access to care identifies the volume of inflows into SESLHD for treatment

IV. That more detailed information be collected to accurately assess future demand:

• on inflows to SSEH from other LHDs for this treatment as well as patients moving from the private sector to the public sector for treatment. It is strongly recommended that audit of access to care is undertaken on an annual basis to identify these data

• about the casemix of patients with retinal diseases including ‘wet’ AMD attending the medical retina clinics as soon as clinics become operational e.g. diabetic retinopathy who require intra-vitreal injections of Lucentis

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3. BACKGROUND Since 2007 the clinicians of the Statewide Ophthalmology Service (SOS), a network of the Greater Metropolitan Clinical Taskforce (GMCT), now the Agency for Clinical Innovation (ACI) have lobbied NSW Health to improve access to Ranibizumab (Lucentis) injections for public patients with ‘wet’ Age-related Macular Degeneration (AMD). The Federal Government has subsidized Lucentis through the Pharmaceutical Benefits Scheme (PBS) since August 2007.

Current arrangements for Pharmaceuticals in NSW Public Hospitals Under the Australian Health Care Agreements (AHCAs)

public hospitals are obliged to provide all services that are components of the episode of care free of charge where the patient has elected to be a public patient. ‘Clause 46 of AHCAs allows fees to be charged for pharmaceuticals at a level consistent with PBS statutory co-payments for non-admitted patients and admitted patients on separation’1. The pharmaceuticals are not to be charged against the PBS.

Pharmaceutical reforms which were undertaken under Clause 21 of AHCAs1

To date the NSW Department of Health has not signed a pharmaceutical reform arrangement and Lucentis is not funded by NSW Health for use in public hospitals.

however allow pharmaceuticals supplied by the public hospital to be claimed through the PBS. When a state or territory has signed a pharmaceutical reform arrangement with the Australian Government, pharmaceuticals provided to non-admitted patients, admitted patients on separation and the majority of cancer chemotherapy pharmaceuticals provided to same day admitted patients may be claimed through the PBS1.

Clinicians from Sydney/ Sydney Eye Hospital (SSEH) raised this issue with the Governing Body of SOS. They were concerned that public patients with this condition could not access appropriate and timely treatment. The majority of patients with ‘wet’ AMD are treated in the private sector.

Over the period from December 2009 until the present the ACI Chief Executive and involved clinicians met with the Director of the Inter-government and Funding Strategies (IGFS) Branch of NSW Health. At these meetings a range of issues were discussed and an agreement to clarify and progress them with the various government agencies was made.

In July 2010 NSW Health invited South Eastern Sydney Illawarra Area Health Service (SESIAHS) and SSEH to undertake a clinical redesign project to review its ‘operational, design and administrative constraints’ in the ophthalmology clinic and ‘between the clinic and other related institutions’. Four organizations i.e. SSEH, ACI, Save Sight Institute (SSI) and NSW Health have collaborated and provided resources for the redesign project.

The current processes to access treatment and ongoing management for patients referred to SSEH with ‘wet’ AMD are inefficient. There are delays in receiving the initial treatment of a Lucentis injection of greater than 14 days the recommended maximum time. As well due to constraints in the current system patients are not always receiving specialist follow up and repeat injections at the intervals recommended by their treating retinal specialists.

Collaboration between SSEH and SSI clinical academics has enabled the provision of the current model of care for public patients with ‘wet’ AMD in SSEH outpatient clinics.

1 2003-2008 Australian Health Care Agreements, Information Sheet Number 6, April 2007

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Age-related Macular Degeneration (AMD) • AMD affects people over 50 years of age. It causes progressive, painless loss of central

vision, affecting the ability to see fine detail, drive, read and recognize faces. It is the most common cause of blindness in Australia i.e. 50% of all blindness2

• There is no cure but there are treatment options that can slow down the progression of the disease, depending on the stage and type of disease.

• In ‘wet’ AMD the vision loss can be severe and permanent and it also often affects both eyes. The earlier ‘wet’ AMD is treated the more likely vision is to be retained.

• Randomized clinical trials have shown that monthly injections of Ranibizumab (Lucentis) directly into the eye will not only stabilize vision in more than 95% of patients but significantly improve vision in about 40% of patients3,4

• The consequences of improved vision are decreased risk of fall, injury and subsequent hospitalization and premature accidental death in elderly patients.

, allowing good quality of life - even driving, and reading vision is achieved.

2 ‘Clear Focus – The economic impact of vision loss in Australia in 2009’. A report by Access Economics Pty Ltd for Vision Australia, June 2010 3 MARINA Study Group. Ranibizumab for Neovascular Age-Related Macular Degeneration, the New England Journal of Medicine October 5 2006; 355:1419- 1431 4 ANCHOR Study Group. Ranibizumab versus Verteporfin for Neovascular Age-Related Macular Degeneration the New England Journal of Medicine October 5 2006; 355:1432 - 1444

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4. CLINICAL REDESIGN PROJECT 4.1 Project Approach

The EYECU project used the Clinical Redesign Program methodology outlined below.

Table 1 Redesign Methodology

The EYECU project involves two phases:

Phase 1 extended from start up to the sign off of the Implementation Plan. It has been undertaken in conjunction with the NSW Health Department Clinical Redesign Program which required the achievement of program deliverables over a 20 week period from mid July 2010 to December 2010

Phase 2

4.2 Goals and Objectives

is contingent on endorsement of the Implementation Plan by SSEH and a commitment to implement the new model of care. An Optical Coherence Tomography (OCT) machine to diagnose and monitor progress in these patients will be provided by NSW Health with successful implementation of an agreed model of care. It is anticipated that this phase could commence in 2011 and would result in many benefits including a model of care which may be transferable to similar public clinics treating patients with ‘wet’ AMD in NSW Public Hospitals.

Goal

The goal of the EYECU project is to prevent avoidable vision impairment and blindness by improving access5

Objectives

to appropriate management for Sydney/Sydney Eye Hospital (SSEH) patients with ‘wet’ (exudative) Age-related Macular Degeneration (AMD).

• To provide timely access4 for the patient with ‘wet’ AMD o to retinal specialists for skilled assessment within one week of diagnosis and o to commencement of treatment within one week from evaluation

• To deliver ongoing treatment consistent with clinician driven protocols for the management of patients with ‘wet’ AMD

• To improve the experience of patients and carers referred with ‘wet’ AMD

5 The Royal College of Ophthalmologists, Age-Related Macular Degeneration Guidelines for Management, February 2009, P 71 recommend that ‘patients should be seen by a specialist with medical retinal expertise within one week of diagnosis, and, there should be no more than one week between evaluation and treatment.

To identify ways to improve the process, share lessons and drive sustainability

To design and prioritise solutions to issues and build stakeholder support

To collect and assess critical data about processes, patients and staff. Identify key issues to be resolved and build the case for change

To develop the project scope and set up project, change, communication and stakeholder management plans

To implement solutions and confirm that benefits are being delivered

To develop a comprehensive plan for implementing solutions and measuring benefits

Diagnostics Implementation Planning Implementation

CheckpointsImplementation

Planning

EvaluationSustainability

Knowledge Sharing

Project Initiation & Start-up

Solution DesignDiagnostics

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• To provide an efficient administrative process for the management of patients with ‘wet’ AMD

4.3 Project Scope Phase 1 of the EYECU project described two journeys undertaken by the patient with ‘wet’ AMD:

I. From initial contact with SSEH either with presentation at the Eye Emergency Department or at an ophthalmic clinic to the first treatment i.e. an injection of Lucentis.

II. For the second and subsequent presentations for assessment and treatment i.e. injections of Lucentis at SSEH

The existing situation was reviewed from commencement of the patient’s journey, issues analyzed using qualitative and quantitative data, solutions identified and recommendations for a new model of care described using Redesign methodology.

The end point of Phase 1 is an endorsed implementation plan which provides solutions to improve access to treatment and ongoing management for patients with ‘wet’ AMD referred to SSEH.

Phase 2: Will occur after the endorsement of the Implementation Plan by SESIAHS, SSEH and SSI and NSW Health with a commitment to implement the new model of care

The table below details items which are in/out of scope for Phase 1 of EYECU.

Table 2: In/Out of Scope In Out New Patients and carers referred from the SSEH Eye Emergency Department (ED) and SSEH clinics with wet AMD

• Dry AMD and other eye diseases • Choroidal neo-vascularisation

due to causes other then AMD

New Patients and carers referred from external clinicians e.g. GPs, Specialists, optometrists and POWH

Existing patients in the SSEH retinal services

Nursing, Medical, Orthoptists, Clerical staff of SSEH and SSI

4.4 Summary of Findings Qualitative and quantitative data provided a very strong case for change.

Quantitative data

• Average time from first presentation with ‘wet’ AMD to injection = 56 days (median = 49 days)

provided a picture of delays in access to care and the current demand:

– Average time from presentation to FFA (Fundus Fluorescein Angiography) Clinic: 14 days (median = 8 days)

– Average time from presentation to Retina Clinic: 25 days (median = 21 days)

– Average time from Retina Clinic to injection of Lucentis in the Lucentis Injecting Clinic (LIC): 28 days

– 5% of patients receiving initial injection within the 2 week (14 day) recommended time period

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Patient with 'wet' Age-related Macular DegenerationJourney from First Presentation to First Injection ( 2009/2010)

14

2831

7 7 7

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56

0

10

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First Presentation to FFA First Presentation to RetinaClinic

Retina Clinic to Injection First Presentation to Injection

Stages in Patients' Journey

Days

Actual Average No. Days / Journey Stage Recommended No. Days/Journey Stage

GRAPH 1: FIRST PRESENTATION TO TREATMENT FOR A PATIENT WITH ‘WET’ AMD IN 2009/10 – AVERAGE TIME

GRAPH 2: FIRST PRESENTATION TO TREATMENT FOR A PATIENT WITH ‘WET’ AMD IN 2009/10 – STAGES OF THE JOURNEY ACTUAL VS. RECOMMENDED

• Majority of patients assessed in Retina Clinic at 6 monthly intervals despite receiving monthly injections

• <40% of patients seen by retinal specialist within 7 days preceding their injection

• 129% increase in referral through ED for patients with AMD (‘wet’ & ‘dry’) over 3 years (2007/08 – 2009/2010)

• Poor clinical information on the referral letter may lead to AMD patients being ‘caught’ on the waiting list as clinical urgency is not identified. Wait for retina clinics can be > 12 months

• Average number of Lucentis injections per month is 62 an increase of 561% since March 2008

• Average number of new patients (first injection) per month in 2009/10 = 5 (60 per annum)

• Minimal change in Retina Clinic & Medical Retina Clinic activity over 3 years (2007/2008 to 2009/2010) due to resource constraints

First Presentation to Treatment (Injection) for a patient with 'wet' AMD in 2009/10

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First Presentation to Injection (days) Rec. time to Treatment (14 days) Average time to Treatment

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• FFA Clinic underutilized despite 14 day wait – 576 appointments available over 48 weeks with average number of annual appointments in last 3 years of 313

Qualitative data

provided a picture of the patients’ experience and the issues of concern for staff both at SSEH, SSI and Prince of Wales Hospital (POWH) retina specialists whose patients are referred to the Lucentis Injection Clinic at SSEH/SSI

GRAPH 3: PATIENT EXPERIENCE

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Staff interviews identified key issues which were divided into three themes for analysis i.e. clinical, administrative and patient experience. Findings include:

81 issues noted during patient and staff interviews and process mapping have been identified as causes of the lack of coordination and integration of processes and care at SSEH & SSI

Causes have been grouped into 9 Categories – see Graph 4

Over a quarter (27%) of issues were classified as ‘Administration – policies/ procedures’

The effects of the lack of coordination and integration of processes and care fall into 5 categories i.e. compromised quality of care (A), delays in performing FFAs (B), delay in access to treatment (C), poor patient experience (D) & retina clinics which run over time (E)

Graph 5 represents the percentage of issues which contributed to the five effects

Over one third (37%) of issues raised contributed to ‘compromised quality of care’

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GRAPH 4: PERCENTAGE OF ISSUES CONTRIBUTING TO IDENTIFIED CAUSES

GRAPH 5: PERCENTAGE OF ISSUES CONTRIBUTING TO LACK OF COORDINATION & INTEGRATION OF PROCESSES & CARE

Percentage of Issues contributing to Identified Causes

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4.5 Endorsed Solutions The Project Steering Committee endorsed three high level solutions for staged implementation. Stage 1: Model of Care (MOC) for ‘wet’ AMD patients in SSEH OPD Retina Clinic and the SSI LIC

21 endorsed solutions to improve access to clinical care and ongoing management, lead to efficient administrative processes in SSI and SSEH and improve the patient experience are detailed in Appendix 1. These solutions will help ameliorate the effects of inefficient and split processes in different physical locations. The design of this MOC was to enable the privately referred non-inpatient (PRNP) funding model with clinical academics to be used. Graph 5 provides an overview of where those solutions need to be applied in the current or ‘as is’ patient journey. GRAPH 6: SOLUTIONS APPLIED TO THE CURRENT PATIENT JOURNEY

Stage 2: MOC for ‘wet’ AMD patients in a Medical Retina clinic in SSEH OPD

Stage 3: MOC for ‘wet’ AMD patients in Medical Retina Clinics in the proposed Bicentenary Institute at SSEH

In Stages 2 and 3 it is recommended that a model of care be developed in the OPD clinics at Prince of Wales Hospital (POWH) to treat patients referred to POWH retina specialists. The current service is split between POWH retina specialists for consultation and management and the injection at SSEH/SSI which is considered an unsatisfactory arrangement for the patient’s care.

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5. IMPLEMENTATION Successful implementation requires effective governance across the project delivery, none so more important than during Phase 2. The EYECU implementation will utilize existing management committees and working groups to oversight, undertake and drive implementation

The SSI/ SSEH ED/OPD Management Committee will be reconvened as the Phase 2 Project Steering Committee.

GRAPH 7: EYECU IMPLEMENTATION GOVERNANCE STRUCTURE

It has been agreed that EYECU Phase 2 Implementation will be coordinated by a part time project officer working with the committees and working groups with support from the ACI SOS Network Manager. The EYECU Coordinator will be seconded from within SSEH staff with previous involvement in Phase 1 of the project.

When discussing the implementation stages three aspects are considered:

• The Model of Care

: the processes and protocols required to provide access and treatment and ongoing management for patients in accordance with agreed protocols

The Funding Model

: in all three stages the PRNIP model is used in SSEH and SSI with varied employment status for the retina specialist. This enables the drug to be prescribed and purchased through the PBS

Location of care: different geographical locations within SSEH and SSI

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5.1 MOC for ‘wet’ AMD patients in SSEH OPD Retina Clinic and the SSI LIC Location: Outpatient Retina Clinics at SSEH which accommodate the SSI Lucentis Injecting Clinic with a requirement for patients to attend the SSI located elsewhere on the campus to register for treatment

Funding Model: PRNIP facilitated by Clinical Academics at the SSI

Model of Care

Progress towards improving the current situation has included:

: the current processes of care have been mapped for the EYECU project and are graphically represented in Graph 6.

• Booking Slip Redesign

– the redesigned slip used by medical staff in the retina clinics to communicate to clerical staff the clinical urgency of the patient has been trialed. Following analysis of the feedback it has been decided to amend and trial the slip in all OPD clinics.

Patient & Staff Education

– membership of the subcommittee has been identified. Staff education commenced with a Retina Education Day in February. Patient education with the first seminar to be delivered by Novartis who supply the drug Lucentis, scheduled. The Subcommittee which includes the Macular Degeneration Foundation (MDF) will develop and schedule an annual program for patient and staff education. As well MDF have provided literature for patients in the clinic waiting areas

The Nurse & Orthoptist Working Group

met in May to consider developing complimentary skills for both professional groups to increase availability of these skills for medical retina clinics which will treat ‘wet’ AMD patients.

The Model of Care subcommittee

5.2 Stage 2 Implementation

: meetings have been held since June. Planning for management of patients in the new medical retina clinics and treated in the injecting clinic is underway.

MOC for ‘wet’ AMD patients in a Medical Retina Clinic in SSEH Outpatient Department Location: Outpatient Clinics at SSEH will accommodate newly established Medical Retina Clinics and patients will continue to register at the SSI injecting clinic

Funding Model: PRNIP staffed by Medical Retina specialists employed as Staff Specialists and facilitated by clinical academics of the SSI

Model of Care:

• A ‘one stop shop’ model which has the capacity to provide diagnostic tests such as FFA and OCT in the same place as the patient is seen by the retina specialist either for the first time or on repeat occasions.

A protocol driven process of care is to be designed by the Model of Care Subcommittee (Graph 7). Components of this model have been identified and endorsed as solutions in the EYECU project. These include:

• Additional OCT machines • Designated injecting area in OPD to meet RANZCO guidelines for intra –vitreal

injections

The flow chart below for private ophthalmology rooms provides an example of a ‘one stop shop’ model of care.

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GRAPH 8: ‘ONE STOP SHOP’ MODEL OF CARE

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5.3 Stage 3 Implementation MOC for ‘wet’ AMD patients in Medical Retina Clinics in the proposed Bicentenary Institute at SSEH Location: renovated North Block of SSEH

Funding Model: PRNIP as per Stage 2

MOC:

5.4 Measurement Post implementation

designed in Stage 2 and adapted for the new physical location

Progress against EYECU objectives will be measured by repeating Phase 1 qualitative and quantitative investigations and comparing them with original diagnostic findings. Targets and timelines will be included. Key Performance Indicators (KPI) to be used include

• Time taken to access retinal specialists for initial assessment and treatment is reduced • Clinician recommended times for follow up and subsequent treatment are met • Variation in accessing the retina specialist for initial and follow up assessment and

treatment is reduced • Clinician driven protocols for treatment of ‘wet’ AMD are identified • Treatment is consistent with clinician driven protocols • Ophthalmology registrars are trained in the management of patients with ‘wet’ AMD by

attending clinics for these patients • Nurses and Orthoptists are trained in the investigations associated with diagnosis and

management of ‘wet’ AMD • All involved staff know about agreed protocols for management of patients with ‘wet’

AMD • Patients and Carer experience with the patient’s journey is improved • Coordination and integration of the care of patients with ‘wet’ AMD is improved

5.5 Horizon Scan Models for clinical care and funding of public care will need to be rethought as technology and drugs change. Issues include:

• Treatment for ‘wet’ AMD requires ongoing injections of Lucentis into the eye/ eyes:

o VEGF – Trap-Eye

o Implantable slow release devices

: this is a promising treatment which could provide another option for the treatment of ‘wet’ AMD patients. The drug given by intra-vitreal injection will potentially halve the injection load as it will be administered two monthly rather than monthly

o The results of the CATT (Comparison of Age-Related Macular Degeneration Treatment Trials) Study were reported in the latest edition of the New England Journal of Medicine. The Study concluded that ‘at 1 year, bevacizumab and ranibizumab had equivalent effects on visual acuity when administered according to the same schedule. Ranibizumab given as needed with monthly evaluation had effects on vision that were equivalent to those of bevacizumab administered monthly’. Bevacizumab or Avastin is used off label to treat ‘wet’ AMD and costs approximately $20 in comparison with Ranibizumab or Lucentis which costs about $2000 per injection. The model of care being implemented will depend on which drug is used

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• Diabetic Retinopathy

: public hospital outpatient eye services will need to be in a position to treat additional public patients with retinal diseases as the treatment for ‘wet’ AMD is used for other retinal diseases. The literature reports that intra-vitreal injections such as Lucentis will /are being used for Diabetic Retinopathy.

Increasing demand

o Inflows: the availability of an efficient public service at SSEH/SSI will encourage patients in other LHDs to seek treatment there.

:

o There is a risk for the public services that out of pocket expenses paid regularly by private patients may see some patients move to the public sector for treatment both in SESLHD and ISLHD and other LHDs

• PBS Reform

– if the NSW government signs up to Federal Government Health Reforms NSW public hospitals would be able to provide and be reimbursed for the cost of Lucentis which would improve access to timely patient care

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6. DEMAND FOR TREATMENT OF ‘WET’ AMD In order to understand demand for public sector treatment for NSW patients with ‘wet’ AMD (excl. blindness) and the capacity of the system to treat them, it is necessary to consider prevalence of the disease, the incidence of and demand for public sector treatment and the capacity of hospitals to treat patients referred to them. An estimate of demand for and capacity to treat public patients at SSEH/SSI is provided below.

6.1 Prevalence of AMD The Access Economics Clear Focus Report6

• In 2009 there were almost 575,000 Australians aged 40 or over with vision loss i.e. 5.8% of the Australian population in that age group

noted that:

• Of these: o 66,500 were blind o With vision loss the largest proportion were aged 70 or over (nearly 70%)

• AMD caused 10% of the vision loss, including blindness or 60350 people in 2009 predicted to rise to 91300 by 2020

• AMD was the most common cause of blindness at 50% • The projected rise in prevalence reflects demographic ageing and assumes a policy-

neutral environment

Table 3: Prevalence rates for vision loss and blindness from AMD1

The prevalence of ‘wet’ AMD was estimated for the Clear Focus report using PBS data (Medicare 2008/09) on processed claims for Lucentis and an assumption of a minimum of 6 injections per annum i.e. approximately 12130 patients.

This figure appears to have been derived on the assumption only one eye per person was treated. Two eyes can be affected however for this report it has been assumed that only one eye is affected. Clinical experience tells us that in practical terms it is reasonable to assume that people who are registered as blind usually no longer require Lucentis, as the definition of blindness used is legal blindness which is a bilateral definition. Legal blindness in terms of AMD equals less than 6/60 in the better-seeing eye i.e. both need to be less than 6/60.

6 Clear Focus – The economic impact of vision loss in Australia in 2009’. A report by Access Economics Pty Ltd for Vision Australia, June 2010

Age group Vision loss(a) Blindness 40-49 - - 50-59 0.05% - 60-69 0.04% - 70-79 0.85% 0.28% 80-89 4.60% 2.37% 90+ 12.97% 10.68% (a) Including blindness. Source: Centre for Eye Research Australia and Access Economics (2004) from MVIP and BMES study data-sets

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Experienced clinicians report that the number of injections per annum varies depending on how the patient responds to the treatment. The first three injections are given monthly and for the remaining nine months of the first year of treatment could be given at different intervals and continue in subsequent years based on the review by the clinician or the setting in which the patient is seen. The intervals may be for example monthly, six weekly or as inferred by the Clear Focus report monthly then three monthly. For the purposes of this report three scenarios are considered i.e. 6, 9 and 12 injections per annum representing variations in clinical practice.

Table 4 outlines the number and estimated percentage of patients in Australia with vision loss (excl. blindness) from ‘wet’ AMD who will require treatment with Lucentis for these three scenarios.

Table 4: Estimated number & percentage of patients in Australia with ‘wet’ AMD (excl. blindness) for three clinical scenarios

Scenarios - inferred Injections per person per annum 6 9 12

PBS Claims for Lucentis 2008/09 72782 72782 72782

Number of patients with 'wet' AMD 12130 8087 6065

Est. no. with Vision Loss from AMD in 2009 60350

Est. no. with Blindness from AMD in 2009 32992

Estimated no. with vision loss from AMD ex. Blindness 27358

Percentage of patients with 'wet' AMD requiring Rx with Lucentis 44% 30% 22%

Appendices 2.1, 2.2, 2.3 and 3.1, 3.2, 3.3 provide a detailed analysis of prevalence of ‘wet’ AMD (excl. blindness) in NSW for three scenarios which were applied to NSW LHD population data 7

GRAPH 9: PREVALENCE OF VISION LOSS FROM ‘WET’ AMD (EXCL. BLINDNESS) BY NSW LHD (2011 – 2020) FOR 9 INJECTIONS PA

to provide an estimate of the prevalent population for ‘wet’ AMD. This is represented graphically (Graph 9) below for patients who have 9 injections per annum (Appendix 3.2).

7 Source: Australian Bureau of Statistics (ABS) estimated residential populations based on the 2006 Census counts and population projections from the Transport and Population Data Centre, Department of Planning (HOIST). Centre for Epidemiology and Research, NSW Department of Health.

NB: the combined prevalent population for SESLHD & ISLHD (previously SESIAHS) is greater than HNELHD

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The top four Local Health Districts (LHDs) with the greatest prevalent population are HNELHD, NSLHD, SESLHD and SWSLHD in descending order.

The combined prevalent population for SESLHD and ISLHD (previously SESIAHS) is greater than the HNELHD.

6.2 Prevalent demand for treatment of ‘wet’ AMD Patients with ‘wet’ AMD are treated predominately in the private sector which has the capacity to continue to meet the private demand.

Appendices 2, 3 and 4 provide detailed analysis of the prevalence, demand and need for treatment in the public sector for the three different clinical practice scenarios estimated using:

• prevalence of the disease in the population over the age of 50 years and applying it to the population projections in LHDs provided by NSW Health

• prevalence of ‘wet’ AMD adjusted for an estimate of public sector demand derived using the 2009/10 number of patients treated in outpatient eye clinics at SSEH8

• the Outpatient Need Index (Appendix 4.1, 4.2, 4.3) provided by NSW Health is used to reflect level of health insurance in LHDs applied to the public demand. The lower the private health insurance cover the more likely patients will seek treatment in public hospital outpatient clinics. Northern Sydney LHD was used as the reference point as it is estimated to have the lowest need for public treatment

(SESLHD & ISLHD) which treats the majority of public patients in these two LHDs and prevalence by LHD in the same year (Table 5)

Medical record audit in Phase 1 did not identify the residential post code of the patient being treated. In 2009/10 however the service provided at SSEH was not well known and so it is assumed that the percentage of patients from other LHDs would be small and as such for the purposes of estimating public sector demand, the prevalent population of SESLHD and ISLHD is used.

Inflows from other LHDs will need to be identified or future demand and required capacity will be underestimated.

It is estimated that 16% of the prevalent population of SESLHD and ISHLHD (SESIAHS) was treated at SSEH in 2009 with the estimated number of patients who received public treatment varying depending on the number of injections per annum (Table 5).

It is understood that using the number of injections to estimate the number of patients will lead to an overestimation in the number of patients being treated as some patients will be new and will have commenced treatment at different times throughout the year. 60 new patients commenced treatment in 2009/2010.

8 In 2009/10 public hospital outpatient eye clinics were available in SESIAHS at SSEH, Prince of Wales Hospital and St Vincents Hospital and there are no public outpatient eye services in the IIlawarra. Currently patients with ‘wet’ AMD are referred to SSEH from St George Hospital and Prince of Wales Hospital. The service for patients referred from POWH is split as they continue to see their retina specialist at POWH whilst having treatment at SSEH

A small number of patients were seen at St Vincents in the outpatient retina clinic and private rooms for injections

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Table 5: Estimate of public sector demand for treatment of ‘wet’ AMD (excl. blindness) in SESLHD & ISLHD in 2009

No. public pts treated SSEH pa 09/10

* Est. 2009 SESLHD & ISLDH Prevalent Pop. by scenario (no.)

Est. % prevalent SESLHD & ISLDH pop treated in SSEH 2009

Inferred no. Injections given at SSEH in 2009/10 743

No. Injections per patient 6 124 763 16%

No. Injections per patient 9 83 508 16%

No. Injections per patient 12 62 381 16%

*Appendix 2.1, 2.2 and 2.3

An estimate of the number of patients needing public treatment in S by clinical scenario for 2011 to 2020 is provided in Table 6.

Table 6: Estimated no. patients needing public treatment at SSEH by clinical scenario* 2011-2020

No. injections pa 2011 2014 2017 2020

6 135 143 151 161 9 89 94 99 106

12 68 72 75 81 * Appendix 4.1,4.2 and 4.3

6.3 Capacity to meet prevalent public sector demand in SSEH/SSI

The number of injecting clinics required to provide the capacity to meet demand is analyzed for one of the clinical practice scenarios i.e. 9 injections per patient per annum and 16% of the prevalent population being treated in SSEH/SSI.

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Table 7: Estimate of the number of injecting clinics required to treat public patients requiring 9 injections per annum with different injecting capacity

SESLHD & ISLHD Est. need for public treatment # No.

total injections

pa

Clinics req'd pa (40 weeks)

Clinics per week

2011- prevalent public demand for 9 injections pa 89 800 Clinic injecting capacity (min) 18 44 1.1 Clinic injecting capacity (min) 10 80 2.0

2014 - prevalent public demand for 9 injections pa 94 846 Clinic injecting capacity (min) 18 47 1.2 Clinic injecting capacity (min) 10 85 2.1

2017 - prevalent public demand for 9 injections pa 99 893 Clinic injecting capacity (min) 18 50 1.2 Clinic injecting capacity (min) 10 89 2.2

2020 - prevalent public demand for 9 injections pa 106 954 Clinic injecting capacity (min) 18 53 1.3 Clinic injecting capacity (min) 10 95 2.4 # Source: see Appendix 4.2

The number of clinics required per week with no increase in prevalent public demand other than an aging population depends on

• the number of weeks per annum clinics are in operation – 40 weeks is used

• clinician variation i.e. the number of injections given in each clinic

The estimated number of clinics per week will vary between just over one and just under two and a half. Currently two injecting clinics are in operation at SSI per week. The time over which they operate is approximately two hours.

6.4 Factors influencing demand at SSEH/SSI There are no reliable data available to quantify the total number of patients with suspected ‘wet’ AMD presenting to SSEH emergency department or retina clinics. It is however anticipated that this demand for public treatment will vary according to factors other than the aging of the population. It is assumed that the following factors will increase demand at SSEH/SSI above prevalent demand especially if treatment and ongoing management has been made more accessible, available and efficient:

• Inflows

: as noted earlier (P22) the Phase 1 medical record audit did not identify patients by residential postcode and it is not known how many patients actually treated with Lucentis in 2009/10 were not residents of SESIAHS i.e. inflows from other AHS/ LHDs. As SSEH is a specialist eye hospital and is one of the few outpatient clinics treating these patients it is assumed that an increasing proportion of patients will be referred from out of area.

Move from private treatment to public treatment: the treatment is currently life-long and some patients may not be able to continually meet the out of pocket expenses even with the

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Medicare Safety Net9

The estimated percentage of the prevalent population treated in 2009 is 16%. Two levels of increased demand have been analyzed to identify capacity requirements for the SESLHD & ISLHD prevalent populations with a move to public treatment i.e. demand to 20% and 25%.

. A patients’ financial situation may lead to a move to the public sector. It is not known how many SESLHD & ISLHD patients and those from other areas will move to public treatment

The number of injecting clinics required to treat patients having 9 injections per annum is estimated accounting for a minimum and maximum number of injections per clinic in Table 8 below.

Table 8: Capacity required for three different levels of prevalent public sector demand in SESLHD and ISLHD

Year 2011 2014 2017 2020 Scenario 1 2 3 1 2 3 1 2 3 1 2 3 no pts pa 89 111 139 94 117 147 99 124 155 106 132 166 no injections pa (9) 800 1000 1250 846 1057 1321 893 1116 1395 954 1192 1490

no injections per week (for 40 wks) 20 25 31 21 26 33 22 28 35 24 30 37

Clinics per week (18 injections) 1.1 1.4 1.7 1.2 1.5 1.8 1.2 1.6 1.9 1.3 1.7 2.1

Clinics per week (10 injections) 2.0 2.5 3.1 2.1 2.6 3.3 2.2 2.8 3.5 2.4 3.0 3.7

Analysis indicates that in 2011 SSEH/SSI will require between one and three injecting clinics per week to meet local prevalent public demand for these three scenarios with requirement for capacity in addition to the existing two injecting clinics depending on clinical practice variation and movement from private to public sectors for local residents.

6.5 Comparison of Actual and Prevalent Demand 2010/2011 data show an increase on 49.53% in the number injections with 79 new patients during this time an increase of just under one third on 2009/2010 (Table 9).

Inflows from other LHDs and movement from private practice is unknown as well as the total number of patients and the actual injection interval.

9 The Medicare Safety net provides families and individuals with financial assistance for high out-of-pocket Medicare Benefits Schedule (MBS) services

Est. % prevalent public demand for SSLHD & ISLHD population with ‘wet’ AMD treated at SSEH

Scenario 1: 16% Scenario 2: 20% Scenario 3: 25%

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Table 9: Lucentis Injection Data – 2009/10 – 2010/11

Year Month No. New Patients

No. Injections

Av. Injections per wk (2 clinics/wk)

2009/2010 60 743 2010/2011 July 7 75 19 August 6 78 20 September 6 87 22 October 7 95 24 November 3 90 23 December 2 61 15 January 5 87 22 February 13 88 22 March 12 109 27 April 4 91 23 May 7 117 29 June 7 33 133

79 1111

Incr. (no) 19 368 Incr. (%) 31.67% 49.53%

The number of injections (1111) given has increased to the level estimated for prevalent demand only in scenario 2 in 2017 (Table 8) i.e. with a requirement of almost 3 injecting clinics per week. This increase would be occurring due to patient inflows from other LHDs.

Actual public sector demand for Lucentis injections at SSEH/SSI has been underestimated by 39% in 2010/2011 (Table 10).

Table 10: Comparison of estimated prevalent demand and actual injections given in 2010/2011

Injections pa

Clinics req'd per week (10 inj) over 40 wks

Clinics req'd per week (18 inj) over 40 wks

Est. Prevalent Demand 2011 (9 injections per pt) 800 2.0 1.1 Actual No. Injections given 2010/2011 2.8 1111 1.5

Gap

-311 % underestimated -38.9%

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It is recommended that three injecting clinics per week be available at SSEH/SSI as soon as possible to accommodate this increase in demand.

Estimated subsequent demand and future required capacity will be underestimated without knowledge of the current level of inflows from other LHDs.

It is strongly recommended that with the repeat audit of access to care the current level of the patient inflows from other LHDs for treatment of ‘wet’ AMD is identified.

It is noted that demand would decrease by a small amount with the establishment of a model of care for treatment of ‘wet’ AMD patients at POWH.

7. COST OF MEETING DEMAND Implementation of Stage 2 and 3 at SSEH involves the establishment of medical retina clinics and the development of a model of care in which patients with ‘wet’ AMD will be seen by the medical retina specialist and have the required diagnostic investigations undertaken on the same day in the same clinic i.e. a one-stop shop. The medical retina clinics will see a broad range of patients including patients with ‘wet’ AMD.

The PRNIP funding model will be used and it is anticipated that billings will cover the cost of the clinics including both staff and goods and services.

The medical retina and injecting clinics will require a medical retina specialist, nurse, orthoptist and clerk as well as routine clinic goods and services.

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8. SUMMARY & RECOMMENDATIONS This report outlines the major activities, findings, endorsed solutions and implementation progress of Phase 1 of EYECU, a Clinical Redesign Project being undertaken at SSEH and the SSI.

EYECU aims to prevent avoidable vision impairment and blindness by improving access to appropriate management for SSEH patients with ‘wet’ (exudative) AMD.

The project has been undertaken using NSW Health Clinical Redesign Program methodology which involves project initiation, diagnostics, solution design, implementation planning & evaluation phases.

EYECU is a complex multi-layered project which has required the engagement of clinician, clerical and management stakeholders who have found time in their busy schedules.

Qualitative data to assess the existing situation was collected through 17 individual interviews with clinicians, 5 patient interviews and 4 workshops with approximately 50 participants. Patient and staff interviews yielded 81 issues, 27% of which were administrative and 37% compromised clinical care.

Medical record audit provided quantitative data about the delay in access to care including a very strong case for change i.e. the median time from first presentation to first injection of 49 days (recommended 14 days); a median time from presentation to retina clinic of 21 days (recommended 7 days); majority of patients assessed six monthly despite monthly injections (clinical review recommended prior to each injection).

Preliminary estimates of prevalence of ‘wet’ AMD (excl. blindness), demand and need for public treatment and the required capacity to meet this demand have been made for three different clinical practice scenarios i.e. 6, 9 or 12 injections per annum

16% of SESLHD & ISLHD prevalent population was treated at SSEH in 2009. The capacity to meet increasing prevalent demand was estimated for 20% and 25% of the prevalent population of SESLHD and ISLHD for 2011 to 2020. These different scenarios were considered to capture LHD resident patients moving from private to public treatment with the implementation of a new model of care.

Recently provided 2010/2011 data identify an almost 50% increase in injections given. A comparison of estimated prevalent public demand and actual public demand for 2010/2011 indicates that actual demand is greater than prevalent demand by 39%.

Three injecting clinics per week will be required at SSEH/SSI as soon as possible to accommodate this increase in actual demand and there is a need to identify demand external (patient inflows) to SESLHD and ISLHD.

It is anticipated that the privately referred non-inpatient (PRNIP) funding model will cover the cost of the medical retina and injecting clinics.

A broad look at future demand for medical retinal clinics identifies that public hospital outpatient eye services will need to be in a position to treat additional public patients with retinal diseases as the treatment for ‘wet’ AMD is used for other retinal diseases. The literature reports that intra-vitreal injections such as Lucentis will /are being used for Diabetic Retinopathy.

Phase 2 Stage 1 is underway with 21 endorsed solutions currently being implemented.

Successful implementation of Phase 2 Stage 1 will trigger the purchase of an Optical Coherence Tomography (OCT) for SSEH. In Phase 2 Stages 2 and 3 the patient’s experience will be improved with the development of a model of care in the OPD clinics at Prince of Wales Hospital (POWH) to treat patients referred

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to POWH retina specialists. The current service is split between POWH retina specialists for consultation and management with the injection at SSEH/SSI. This is considered an unsatisfactory arrangement for the patient’s care.

Recommendations

I. The development and three stage implementation of a model of care for ‘wet’ AMD

patients in SSEH/SSI i.e. in the existing situation, in new medical retina clinics both in current locations and in a planned Bicentenary Institute.

II. That the split configuration of care for POWH patients with ‘wet’ AMD is reviewed and that these patients referred to POWH medical retina specialists are treated and managed at the POWH.

III. That SSEH/SSI provide three injecting clinics as soon as possible and reconsider capacity requirements as soon as the audit of access to care identifies the volume of inflows into SESLHD for treatment

IV. That more detailed information be collected to accurately assess future demand:

o on inflows to SSEH from other LHDs for this treatment as well as patients moving from the private sector to the public sector for treatment. It is strongly recommended that audit of access to care is undertaken on an annual basis to identify these data

o about the casemix of patients with retinal diseases including ‘wet’ AMD attending the medical retina clinics as soon as clinics become operational e.g. diabetic retinopathy who require intra-vitreal injections of Lucentis

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9. REFERENCES Clear Focus – The economic impact of vision loss in Australia in 2009’. A report by Access Economics Pty Ltd for Vision Australia, June 2010

MARINA Study Group. Ranibizumab for Neovascular Age-Related Macular Degeneration, the New England Journal of Medicine, October 5 2006; 355:1419- 1431.

ANCHOR Study Group. Ranibizumab versus Verteporfin for Neovascular Aged-Related Macular Degeneration , the New England Journal of Medicine, October 5 2006; 3555:1432- 1444.

The Royal College of Ophthalmologists, Age-Related Macular Degeneration Guidelines for Management, February 2009

10. ACRONYMS/ ABREVIATIONS

ACI Agency for Clinical Innovation

AMD Age-related Macular Degeneration

ED Emergency Department

IGFS Inter-government & Funding Strategies

ISLHD Illawarra Shoalhaven Local Health District

LHD Local Health District

MOC Model of Care

OPD Outpatient Department

PBS Pharmaceutical Benefits Scheme

PRNIP Privately referred non-inpatient

SESIAHS South Eastern Sydney Illawarra Area Health Service

SESLHD South Eastern Sydney Local Health District

SOS State-wide Ophthalmology Service

SSEH Sydney and Sydney Eye Hospital

SSI Save Sight Institute

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11. Table of Appendices

1 Endorsed Solutions 32

2.1 Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 6 Injections pa

34

2.2 Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 9 Injections pa

35

2.3 Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 12 Injections pa

36

3.1 Prevalence of Vision Loss from AMD (incl & excl. blindness) – by LHD and Age Group 2011-2020: 6 Injections

37

3.2 Prevalence of Vision Loss from AMD (incl & excl. blindness) – by LHD and Age Group 2011-2020: 9 Injections

39

3.3 Prevalence of Vision Loss from AMD (incl & excl. blindness) – by LHD and Age Group 2011-2020: 12 Injections

41

4.1 Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 6 Injections pa - Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index

43

4.2 Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 9 Injections pa - Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index

44

4.3 Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 12 Injections pa - Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index

45

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Sol

utio

n S

tage

Sol

utio

n ID

Solution - high level

Solution - medium level Solution Description - detailed Outcome Measure How/who/what

Timeline (2011)

1 1.04

Access to clinical care and ongoing management

MOC for desired journey for existing clinics

That there is an additional allocated resource (nurse/orthoptist) to do VA, pupil dilation, IOP for LIC

Additional nurse/orthoptist allocated to LIC

SSI/SSEH Executive June

1 1.06

MOC for desired journey for existing clinics Redesign the workflow for diagnostic testing Better work flow exists

SSI/SSEH ED/OPD Management Committee May

1 1.07

MOC for desired journey for existing clinics

Review the timing & frequency of the FFA clinic & make urgent appts available for patients

FFAs occurring more than weekly, 50% pt's waiting 7 days or less, urgent spots are kept available

OPD mgmnt committee, SSI/SSEH orthoptists, data collection by EYECU July

1 1.11

MOC for desired journey for existing clinics

Revisit SSEH/ SSI Partnership Agreement - need multidisciplinary group to consider extra nurse/ orthoptist, one medical record

Partnership Agreement renegotiated, endorsed & adhered to

SSI/SSEH Executive May

1 1.19

MOC for desired journey for existing clinics

Change location of LIC from ED Procedure Rm to General Emergency with separate / adjacent waiting area - RANZCO guidelines do not stipulate the need for a Procedure Room for intravitreal injections - adhere to RANZCO guidelines for intravitreal injections

Location changed. RANZCO Guidelines for intra-vitreal injections followed

SSI/SSEH Executive May

1 1.20

MOC for desired journey for existing clinics

Develop standardized discharge criteria & protocol for 'wet' AMD patients in Retina Clinics

Protocols endorsed & introduced

SSI/SSEH ED/OPD Subcommittee D June

1 1.01

Model of care (MOC) for desired journey for existing clinics Develop a model of care for 'wet' AMD patients in existing clinics MOC documented

SSI/SSEH ED/OPD Subcommittee D June

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1 1.03

Nurse and orthoptist working group

Nursing & Orthoptists Working Group to be established to discuss working together, skills base & gaining complimentary skills, assignment to clinics, process for refraction of 'wet' AMD patients

1) Nurse /orthoptist available to do OCTs in RCs, 2) more than 2 skilled staff available to do FFAs

SSI/SSEH ED/OPD Subcommittee C April

1 1.13 Staff education

Staff Education re disease, administrative processes, LIC & clinical urgency - include current operation of LIC, procedure room during LIC (access for non clinical personnel e.g. cleaners, nurses, infection control issues, referral to low vision agencies

Education programs developed & delivered using multiple delivery modes

SSI/SSEH ED/OPD Subcommittee E April

1 1.09 Wet AMD coordinator

Wet' AMD Coordinator: Develop a role description & recruit to a coordinator position to coordinate FFA, RC & injection appointments & undertake paperwork for provision of drug. Medical Record documentation to be considered as part of MOC development.

PD developed for Wet AMD Coordinator & coordinator has commenced

SSI/SSEH Executive July

1 1.10

Improve administrative processes Booking Slip Booking Slip redesign

Booking slip is redesigned & trialed, endorsed introduced into Retina Clinics, Booking Slip utilization audit

SSI/SSEH ED/OPD Subcommittee A March

1 1.02 Communication

Model of care for POWH patients in SSI & LIC - include communication of administrative & clinical processes. Undertake further investigation on numbers of patients from POWH

Referral package for POWH patients is developed & implemented; annual no. POWH referrals identified

SSI/SSEH Executive March

1 1.08 Consent for FFA Refine processes for booking, consent & referral for FFA

Time between Dx & FFA is reduced to < 7 days, Booking & consent refined; Frequency of 'missing' consent forms for FFA identified

SSI/SSEH ED/OPD Management Committee May

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1 1.21 External referrals Establish a working group to develop business rules for triaging of external referrals to retina clinics

Protocol driven triage of external referrals for patients

SSI/SSEH ED/OPD Management Committee - subcommittee A July

1 1.18

Identification of clinical urgency of 'wet' AMD patients

Use 'general comment' in electronic booking system to flag 'wet' AMD patient, indicating that these patients cannot have appointments changed or moved; add to business rules re booking appointments for 'wet' AMD patients

Wet AMD patients flagged in Booking system

SSI/SSEH ED/OPD Management Committee - subcommittee A March

1 1.14 Medical Record documentation

Record VA in Medical Record not only in EMR ( work needs to be done to develop business rules around recording of VA including consequences for EMR)

VA is recorded in medical record & EMR

SSI/SSEH Executive June

1 1.17 SSI Improve SSI administrative processes - booking process for LIC, SSI Telephone response

New telephone system and booking processes improved

SSI/SSEH ED/OPD Management Committee - subcommittee B May

1 1.16 Patient experience Appointments

Staggered appointments for LIC - needs an additional resource for this to happen i.e. nurse/ orthoptist

Staggered appointments are available

SSI/SSEH Executive June

1 1.15 Facility Improve signage at SSEH and between SSI & SSEH Clear signage between SSI and SSEH in position

SSI/SSEH ED/OPD Management Committee March

1 1.05 Facility Organize a designated waiting area for patients waiting for the LIC Designated area available

SSI/SSEH ED/OPD Management Committee May

1 1.12 Patient Education Patient Education re their disease, administrative processes, clinical care including post LIC instruction

1) Handouts on AMD provided; 2 )booklet/ package on admin process & post intra-invitreal injection instructions provided 3) patient's have completed education programs & have received support from external agencies

SSI/SSEH ED/OPD Subcommittee A March

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2 2.01

Medical Retina Clinic in OPD

Medical Retina Clinic in OPD- one stop shop - FFA, RC & LIC in one place. MR clinic in AM, LIC in PM

2 2.02 Model of Care for 'wet' AMD patients in MR Clinic in OPD 2 2.03 Model of Care for 'wet' AMD patients in OPD at POWH 2 2.04 OCT machines purchased (x2)

2 2.05 Designated Injecting area in OPD to meet RANZCO guidelines for intra-vitreal injections - address infection control issues

3 3.01

Medical Retina Clinic/s in proposed Bicentenary Institute

Medical Retina Clinic in proposed Bicentenary Institute (BI)- one stop shop - FFA, RC & LIC in one place. MR clinic in AM, LIC in PM

3 3.02 Model of Care for 'wet' AMD patients in MR Clinic in proposed Bicentenary Institute

3 3.03 A separated 'AMD' Clinic in proposed Bicentenary Institute

3 3.04 Model of Care for 'wet' AMD patients at POWH - treat their own patients in one place

3 3.05 OCT machines purchased (x2)

3 3.06 Workflow & layout in BI to address overcrowding, lack of seating & lack of confidentiality

3 3.07 Designated Procedure Room in BI - address infection control issues

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APPENDIX 2.1 EYECU PROJECT: PHASE 1 REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 6 Injections pa

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APPENDIX 2.2 EYECU PROJECT: PHASE 1 REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 9 Injections pa

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APPENDIX 2.3 EYECU PROJECT: PHASE 1 REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2009: 12 Injections pa

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APPENDIX 3.1 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl & excl. blindness) – by LHD and Age Group 2011-2020: 6 Injections

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APPENDIX 3.1 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2011-2020: 6 Injections pa

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APPENDIX 3.2 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2011-2020: 9 Injections pa

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APPENDIX 3.2 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2011-2020: 9 Injections pa

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APPENDIX 3.3 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2011-2020: 12 Injections pa

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APPENDIX 3.3 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (incl. and excl. blindness) – by LHD and Age Group 2011-2020: 12 Injections pa

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APPENDIX 4.1 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 6 Injections pa Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index

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APPENDIX 4.2 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 9 Injections pa Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index

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APPENDIX 4.3 EYECU PROJECT REPORT

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Prevalence of Vision Loss from AMD (excl. blindness) from ‘wet’ AMD by LHD 50 yrs & over 2011-2020: 12 Injections pa Estimate of the no. of patients requiring public sector treatment adjusted using the OP Need Index