Review undertaken and report drafted by: Mark Leggett Associate Consultant, Francis Health February / March 2017

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2 Review undertaken and report drafted by: Mark Leggett Associate Consultant, Francis Health February / March 2017 Document Control: Document Name: Report: Funding of Live Donor Renal Transplant Services and Resources Version: 1.01 Author: M Leggett As at: 12:00, 28/03/2017 Status: FINAL francishealth.co.nz Page 2

3 Table of Contents: 1. Executive Summary: Overview Key Findings and Recommendations Background: Overview: Key Questions considered: Review Methodology: Service Implementation from mid-2014: New Service Funding Context: Documentation Review: Position Papers and Research: Contract Documentation: Implementation of the funded services: Allocation of Funding: Impact of the new roles and services: Achievement of the objectives of the funding: Service Characteristics in summary: Summary of Service Variations: Service Reporting What Do The Stakeholders Say? Online Survey Results Consumer Responses: Sector Responses: Findings and Recommendations: Appendices: Appendix 1: Review Terms of Reference Appendix 2: Document Review Register Appendix 3: Stakeholder Engagement francishealth.co.nz Page 3

4 Tables and Figures: Table 1: Actual and Expected Live Kidney Donor Volumes by Transplanting Centre Table 2: Donor Liaison Coordinator Role Deployment Table 3: Commentary: Deployment of DLC Roles Table 6: Summary - Live Donor and Total Transplants to end Table 7: Donor Liaison Activity and Outcome Reporting Table 4: DHB Summary Data - July - Sept Table 5: Ratings of delays in living donor workup - July - Sept Figure 1: Transplant Service Role by DHB Figure 2: Timing of uptake of funding by DHB Figure 3: DHB Transplant Resources - Donor Liaison Coordinator Deployment Acknowledgements: We wish to thank the stakeholders involved in this service for their time and input into the discussion. We received direct and indirect input from consumers, family and whanau, clinicians and managers with input from all DHBs that have received funding for new resources from Thank you also to Annette Pack and Jane Potiki from the Ministry of Health for oversight, guidance and coordination support for elements of the review. francishealth.co.nz Page 4

5 1. Executive Summary: 1.1. Overview This small scale review has been undertaken during most of February and March, Stakeholder engagement was managed through a small number of face to face meetings, predominantly at service leadership level, telephone and communications with consumer representatives, clinical and management staff, and a simple online survey. The interactions with all stakeholders demonstrated a high level of commitment to the services, the consumers and the development of the live donor renal transplant numbers across the country. Stakeholders presented an unequivocal support for the intent, objectives, funding and associated resources that support the National Renal Transplant Service Key Findings and Recommendations [See detailed findings and recommendations in section 9] Service Funding and Implementation: The allocation of new funding to support new resources and activity in mid-2014 delivered a significant service improvement opportunity to the living donor renal transplant service as well as the renal transplant services overall. The implementation was not implemented evenly in terms of timing, and resources were allocated on a simple formula with 0.5 FTE for referring DHB services, and 1.0 FTE for transplanting DHBs. This has delivered some inequities, as not all referring DHBs had the same starting point, and there is a wide range of geographical and demographic challenges in that service sub-set. Key challenges included a tight implementation timeline associated with the funding decision, a delayed DHB uptake and variable deployment according to DHB resources. However, there is now a sense of the development of a national service built on distributed coordination resources that are beginning to successfully support the living donor identification and coordination requirements. 1 National Renal Transplant Leadership Team (NRTLT) - The core National Renal Transplant service and the Leadership Team was established in mid- 2014, and the Clinical Director established as the senior point of reference between the service and the Ministry of Health. - Operational and Strategy Groups have been set up with participation from across the sector - The NRTLT has developed into a strong point of reference for the renal services sector, having matured over the last two and half years. - A minor adjustment to the structure of the Leadership Team is recommended, relative to the involvement of the consumer representation, and the inclusion of a Donor Liaison Coordinator representative. Some options regarding overall structure and the relationship between the Strategy and Operational Groups are also raised. francishealth.co.nz Page 5

6 RECOMMENDATIONS: 1.1 Continued Funding Support: It is recommended that: - The funding for the National Renal Transplantation service continue at the current levels for a minimum of an additional three years (i.e. July 2017 to end June 2020). o This includes Clinical Director and P.A positions A further recommendation is made related to the allocation of the Business Analyst resources; - it is recommended that consideration be given to splitting the 1.0 FTE Business Analyst role with allocation of 0.5 FTE to the southern region (based in Christchurch) and 0.5 FTE be based in the northern region. See discussion in Section 8 Findings. 1.2 National Renal Transplant Leadership Team Structure and Function: It is recommended that the NRTLT Terms of Reference be reviewed with respect to some adjustment of the structure; - Consideration should be given to a consolidation of the membership of the NRTLT, which may include the following options; o Reduction of Strategy Group meetings to one annual meeting given that the development phase of the service is largely complete o Adjustment of the membership of the Operational Group with the transplant centre management representation reduced to one providing reporting to management from other centres and the position having a tenure of 1 to 2 years only - inclusion of a representative from the Donor Liaison Coordinator (DLC) group as these stakeholders have a unique and specific view of a significant portion of the living donor participant workload. DLC representative initially to be from a referring DHB Consumer representation: o o Specification of the role of the consumer in the Strategy Group Allocation of specific space in the meeting agenda of the Strategy Group for presentation and discussion of consumer-generated content and issues 2 Donor Liaison Coordinator roles: These positions were allocated on an even basis between the transplanting DHBs (1.0 FTE) and the referring DHBs (0.5FTE). Allocation of positions, and recruitment of staff was delayed according to the readiness of the local DHB and the resource and experience base available at the time. Overall, 11 District Health Boards received funding for Donor Liaison Coordinator positions, totalling 7 FTE. The overall response to the roles has been unequivocally positive from all stakeholders, particularly the living donors, their family and whanau. The Coordinators have had varying successes with efforts to build interest in live donation, but overall even without the benefit of reporting focused on the Coordinator s activities and caseloads, anecdotal reports from a range of stakeholders suggest that a consistent growth in live donor activity will shortly be visible through the transplant outcomes reporting in the area of living donor renal transplants. This level of service improvement, particularly as experienced by the living donors progressing through the workup and support processes, means that a future reduction or removal of the Coordination resource would be a challenging step backwards for the renal transplant services in New Zealand as a whole. Management stakeholders interviewed in the review confirmed that the local DHBs are highly unlikely to be able to sustain the current level of Donor Liaison Coordination staff, indicating that a medium to long term funding solution is francishealth.co.nz Page 6

7 required to confirm the coordination support that is fundamental to the success of living donors progressing to the associated transplant. The scope of practice for the DLC roles across the country also has some variations, potentially dependent on the size and structure of their clinical teams and the overall relative workload. The ability to request or make referral to clinic appointments and diagnostic testing is not available to all Donor Liaison Coordinators, but where this exists, the Coordinators report that they are able to efficiently manage their workloads and to provide timely support for the living donors in their service. The recommendation below therefore suggests a standardisation of this approach. It is noted that the respective clinics and diagnostic services will need to be consulted in this area. RECOMMENDATION: 2.1 Continued Funding of Donor Liaison Coordinator roles : It is recommended that; - the Ministry of Health continue with the current level of funding for the Donor Liaison Coordinator positions for at least the next three years (i.e. the end of June, 2020) Establish a more targeted education and training approach for DLC staff: It is recommended that; - the DLC staff be surveyed to establish a baseline of training and education requirements - the current annual gathering of DLC staff be reviewed to include a specific agenda to support those training requirements, with an initial focus on report management and the use of spreadsheets and other tools, as well as supporting a practical response to the outcome of recommendation 5.1 establishment of a formal communications protocol Scope of Practice: - The scope of practice for the Donor Liaison Coordinators be reviewed with a view to standardising access to referral for clinic and diagnostic testing requests under standardised clinical guidelines 3 Reporting Mechanisms: The service and Ministry of Health have set up quarterly reporting processes that capture high level events in the workup process that the living donor experiences. This is also connected to recipient pathway events. Overall transplant volumes are reported by the Clinical Director of the service and these deliver macro level outputs that, due to the time taken for a living donor to progress through the service, in reality reflect activities that take place at a lot earlier than the report timeframe allows. This review has identified that there is a lack of specific activity based reporting at the level of interaction between the Coordinator and the living donor. It is suggested that information at this level would provide a detailed snapshot of the actual workload of the service from quarter to quarter, and would eventually support resource and capacity planning due to the identification of volumes trends up to 12 months prior to transplant events. francishealth.co.nz Page 7

8 RECOMMENDATION: 3.1 Addition to the report portfolio: It is recommended that; - the National Renal Transplant Service give consideration to the addition of activity based reporting that captures the total activity to support workload monitoring and assist resource and capacity planning. (Note: this reporting format would be supported by the service process mapping covered in recommendation 4.1) 4 Service delivery: The National Renal Transplant Service has benefited significantly from the injection of focused coordination resources from the second half of Services are now generally more standardised, the interactions between DHBs are improving, and the living donors and their family and whanau report a high level of satisfaction with the support provided. Key developments and successes include the introduction of home visits for family and whanau of patients on the transplant waiting list, as well as presentation of living donor renal transplant services in community settings and group meetings. This activity is supported by the high quality educational materials developed by the Counties Manukau Living Kidney Donor Aotearoa group, and these are used widely and successfully across the country. However, the home visit approach is not consistent across the country, with varying reasons. Larger clinical teams report that delivery of home visits is difficult due to service workload or because these are generally required to take place after hours to suit the families. Other DHBs such as Waikato report that home visits are not possible for the families in distant reaches of their regional group. Where coordinators do attend home visits, these are reported as valuable for the recipient and their family. Progression of family / whanau members to living donor interest is not guaranteed, and reported numbers remain at or about the level of family and whanau commitment. Any shift from the family s appreciation of the attention to detail experienced in a home visit to greater percentages of family based living donors will need to be reviewed in the context of future reporting. Other service variability remains, however, including overall work-up pathways and sequencing, generally relative to the requirements of the relevant transplanting DHB, and this will be addressed (at least in part) by the introduction of standardised national guidelines and pathways that are about to be agreed by the NRT Leadership Team. However there are elements of standardisation that will not be available to the service until such time as the role and workload of the Donor Liaison Coordinator is fully identified. This can be achieved through a focused service process mapping process to assist with establishment of key metrics at activity level, which in turn would support the reporting identified in section 3 (above). The additional workload associated with reporting is acknowledged, but the following recommendation is based on the view that the outcome is of sufficient value to longer term planning and support of the living donor renal transplant services. It is also noted that the additional funding from mid-2014 was allocated in response to the sector s concerns about the delivery of successful living donor transplants. Continuation of support for these resources from the Ministry is likely to require better visibility of the actual levels of activity, access to accurate trend data, and the ability to project requirements in medium term. francishealth.co.nz Page 8

9 RECOMMENDATION: 4.1 Service Process Mapping: It is recommended that; - a service process mapping project be established by the NRTLT to identify and map the processes undertaken by, and in support of, living donors as they progress through workup process - Such a process be tightly scoped to ensure a focus on the workup activities - Resource allocation be attributed via an adjustment in the allocation business analyst FTE to support design, management and reporting of the process. (See recommendation 1.1) - Further scoping would be required to confirm the level of resource required, dependent on the final scope of the service mapping project An area of variability and concern that has been raised is that of the level of communications between DHBs, specifically between referring and transplanting DHBs, where communication volumes and service workloads appear to conspire to cause intermittent delays in response times, and therefore potentially affecting the workup processes for living donors and their recipient pair. It is recommended that a formal approach to correcting this and mitigating the associated risks is prioritised by the NRTLT This recommendation acknowledges that the Health Information Standards Organisation standards are the foundation upon which transfer and management of health information stands. The recommendation is presented as an adjunct to those standards in that it seeks to address functional requirements of communications and behavioural adjustments and agreements in the sending, receiving and management of referred patient information. 4.2 Development of formal communications protocols: It is recommended that; - the NRTLT Operational Group define a formal set of communications protocols related to communications between service groups - This is not a comprehensive, expert recommendation, however it is proposed that these protocols should include a minimum of: o standardised addresses for management of referrals at each DHB s renal service, i.e. not a staff member s named o agreed sending and receiving behaviours including maximum response times o agreed methods for clearance of inbound s and alerting intended recipients o agreed standards of subject line content to assist with correct identification within HISO requirements o investigation of secure messaging options francishealth.co.nz Page 9

10 2. Background: The Ministry of Health seeks to identify the activities, services, initiatives and outcomes associated with its funding of live donor renal transplant services, a new funding stream which was made available to District Health Boards from July 1, Overview: - The Ministry of Health s funding for service improvement in live donor renal transplants, commencing in mid was supported by a range of key reports and issues papers from within the sector, as well as from the consumer stakeholder group. These included; o National Plan for Renal Transplantation Services o Five Point Plan from the National Renal Advisory Board o Increasing The Rate Of Live Donor Kidney Transplantation in New Zealand: Developing An Evidence Base (Paula Martin thesis) - In summary, these papers collectively identified a shortlist of areas to be addressed as action points or strategies; o The development of a more formal leadership for renal transplant services overall o Support for a targeted focus on increasing live donor volumes in the renal transplant services o Support for the donors to work through the system safely and with as little financial impact as possible o Increase analytical and advisory support - In response, the funding agreed in 2014 covered three main service inputs: o Development of leadership through a Clinical Director for the national service with analytical and administrative support o Implementation of specified Donor Liaison Coordinator roles in the transplanting and direct referral District Health Boards o Support for the New Zealand Kidney Exchange The funding was allocated for the financial years 2014/15 to 2016/17. This report, and the review that it summarises, is therefore a part of the Ministry of Health s due diligence approach to reviewing the funding and outcomes, and to make decisions for the next steps. This process has been a small scale review process utilising stakeholder engagement and documentation review as key supporting processes. The review took place between February 6 th and March 22 nd, The Terms of Reference for the review process can be found in Appendix Key Questions considered: This review has been required to identify: - the characteristics of the newly funded services in their context - the success factors and changes made in service delivery - the outcomes and implications of the above francishealth.co.nz Page 10

11 3. Review Methodology: - Engagement: Review definition and management of scope (Terms of Reference, see Appendix 1) - Documentation review (see detailed reference list in Appendix 2) - Stakeholder engagement (see Appendix 3) o Face to face meetings where these were possible within the timeframe o Phone calls and teleconferences National Renal Transplant Leadership Team (NRTLT) teleconference Donor Liaison Coordinators teleconference o Attendance at National Renal Advisory Board meeting o Online Survey (open / anonymous) (see Section 7) Targeted to health sector staff directly involved in the National Renal Transplant services, the leadership team and senior management Targeted to consumers (donors, recipients, family/whanau) associated with the services between 2014 and the present day completed donation / transplantation not required. - Report findings and deliver recommendations francishealth.co.nz Page 11

12 4. Service Implementation from mid-2014: New Service Funding Context: In the health context, there are few, if any, services that stand alone, or which can be considered as isolated processes. Therefore this review of the live donor renal transplant services has required attention to a range of fundamental components that influence both the services being delivered, and the eventual outcomes. These include, but are not limited to; - The health sector and its resources with respect to these services at the outset of the funding - The planning and proposal documentation - The Ministry of Health s contract and service specification platform for service funding and implementation - The key performance indicators providing outcome measures - The experience of the consumers with the new services - The experience of the personnel in the contracted roles The allocation of the funding in the FY 2014/15 budget was a response by the Ministry of Health to a range of papers outlining the need for, and benefits of, targeted processes and positions to deliver service improvements and increased volumes of live donor renal transplants. The funding was intended to commence in June 2014 (ref: Health Report # ). Those documents included: - National Plan for Renal Transplant Services (Technical Advisory Group, Clinical Leaders, Ministry of Health) - Five Point Plan (National Renal Advisory Board) To that end, a paper (Health Report # ) was put before then Minister of Health, Hon. Tony Ryall, for his consideration of a three year funding envelope that would respond to the recommendations in those papers. The funding request included; - Formation of a National Renal Transplant Service - Allocation of a national level Clinical Director role - Allocation of administrative and business analysis support for the Clinical Director - Allocation of specified Donor Liaison Coordinator Roles in the three transplanting District Health Boards as well as in the referring DHBs The paper included request for two separate workstreams, the first targeted at increasing the number of live donor renal transplants by 10, year on year. The second workstream was to address overall renal transplant services and volumes. The new funding allocated in June 2014 was not applied as a completely novel service in the absence of foundational and associated services. It was therefore allocated to District Health Boards generally as an addition to current services. francishealth.co.nz Page 12

13 The new funding requested covered: Role(s) and Components National Renal Transplant Service, and National Renal Transplant Leadership Team (including 0.4 FTE Clinical Director, 0.5 FTE Business Analyst and 0.2 FTE Administrative Support): Other support costs (meetings, travel, etc.) Donor Liaison Coordinator roles across 11 DHBS: (1.0 FTE in 3 transplanting DHBs, 0.5 FTE in referring DHBs) Per Annum $194,856 $ 20,000 $650,000 New Zealand Kidney Exchange (note: not in scope for this review) $100,000 Total new funding (per annum), $964,856 The response from the Minister was positive, and the funding request agreed. It should be noted that the handwritten response from the Minister to the Ministry of Health team responsible for the request included some concern as to the tight implementation timeframe for the services. This is noted as the reviewer believes that there is some direct correlation between the variable implementation times for the services and positions amongst the funded District Health Boards, and the outcomes that are now reported particularly the performance of the services in the area of volume increase for live donor transplants. See further discussion in Section 4: Implementation The allocation of the funding then required development of contract documentation for the respective DHBs, with detailed service specifications and reporting expectations. The service specification was informed by the aforementioned supporting documents, with the PhD thesis by Dr Paula Martin Increasing the rate of live donor renal transplantation in New Zealand: Developing an evidence base supporting the Ministry s recommendation to the Minister. More latterly, the 2016 report from the Live Kidney Donation Aotearoa project for the Ministry of Health has supported understanding of strategy implementation outcomes and challenges, particularly in the Counties Manukau DHB region. francishealth.co.nz Page 13

14 Arrangement of DHBs for Provision of Kidney Transplantation Services (Information borrowed from the diagram in the Kidney Transplant Activity Report - Calendar year 2016) Arrangement of DHBs for Provision of Kidney Transplantation Services DHBs WITHOUT comprehensive dialysis services AUCKLAND RENAL TRANSPLANT GROUP Bay of Plenty DHB Lakes DHB Tairawhiti DHB WELLINGTON RENAL TRANSPLANT GROUP Hutt Valley DHB Nelson Marlborough DHB Wairarapa DHB Whanganui DHB SOUTH ISLAND RENAL TRANSPLANT GROUP South Canterbury DHB West Coast DHB Waikato DHB DHBs WITH comprehensive dialysis services Counties Manukau DHB Waitemata DHB Northland DHB Taranaki DHB MidCentral DHB Hawke s Bay DHB Southern DHB Transplanting DHBs Auckland DHB Capital & Coast DHB Canterbury DHB Figure 1: Transplant Service Role by DHB The figure above is a reviewed representation of diagrams found in the 2016 Calendar year report (Kidney Transplantation Activity Report) from Clinical Director Dr Nick Cross. This figure represents the referral pathways for the renal transplant service. The new funding was delivered into this service and organisational structure. As such, there are no surprises in noting that the Donor Liaison Coordinator positions, whether the 0.5 FTE in referring DHBs, or 1.0 FTE in transplanting DHBs, have been applied in different ways (see discussion in section 6 for specific allocation of funding and roles). francishealth.co.nz Page 14

15 5. Documentation Review: A read through of the range of detailed documents relating to renal transplantation services in New Zealand provides context for the scope of this review. This section provides a list of key assumptions that underpin the discussion and the recommendations found in the review; - The renal transplantation services in New Zealand are based around three transplant centres in Auckland, Wellington and Christchurch. As such, it is highly unlikely that New Zealand will see an increase in renal transplant centres in the foreseeable future - Because of this, the structure of transplant services is formatted in a hub and spoke arrangement - The outcome of the current funding for live donor renal transplants is therefore highly dependent on the level of integration and consistency between the geographic services, and within each hub and spoke. - The three transplant centres all have slightly different organisational structures, and the staffing in place at the beginning of the contract have informed the individual DHB s allocation and use of the funding Position Papers and Research: National Plan for Renal Transplantation Services: This document has a wider brief than the limited scope of live donor renal transplant services, but is fundamental to the context of the services under review. In summary, the plan provides structure for the development and realisation of; - a national service delivery model - documented clinical pathways for donors, recipients, and kidney acquisition overall - alignment of key performance indicators to the service model and recipient and live donor pathways to support service monitoring, planning and prioritisation of resources The plan also provided a range of options for the overall funding and support of renal transplantation nationwide, given the challenges of geography, demography, cost / benefit allocation and the current resources baseline. Note: it is outside the scope of this report to address those issues with the exception of where the report s recommendations intersect with them. National Renal Advisory Board Five Point Plan to Increase Live Donor Renal Transplantation in New Zealand : This comprehensive document is more specific to live donor renal transplantation and covers the background and implications of end stage kidney disease (ESKD) in New Zealand. The document identified a need for a comprehensive, integrated approach to building the number of live donors available for renal transplantation noting that there is likely to be no one solution to improving live donor transplantation rates. In brief, the plan proposes five specific actions that will lead to the desired increase in live donors; 1 Pilot increased support at the three transplanting DHBs for three years 2 Implement proposals to meet 80% of live donor s lost income 3 Support a national paired exchange scheme 4 Funding live renal transplantation as a national service francishealth.co.nz Page 15

16 5 Make live renal transplantation a Government health priority for the next three years These first two significant documents lean heavily on the research supporting cost-effectiveness of renal transplantation overall, as well as the benefits of live donor participation. For the purpose of this report, the cost-effectiveness of these services is fully accepted and assumed as a baseline understanding that supports the recommendations for future funding and support of the services. Thesis by Dr. Paula Martin (PhD) Increasing the rate of live kidney donation in New Zealand: Developing an evidence base This thesis provides a significant relevance to the process as it was authored by a participant / consumer stakeholder in the live kidney transplant services. Much of the recommendations arising from the thesis were taken up by the Ministry of Health to support the drafting of the rationale and objectives of the positions and processes supported by the new funding. Poor support from policy, practice and the system is identified as a key barrier to the realisation of a consistent, high quality and growing living donor kidney transplant (LDKT) in this country. It is suggested that these challenges are not insurmountable and that the underlying repetitively proven cost / benefit of transplant vs. dialysis or other modalities of care provide a strong rationale for a concerted effort by the system to manufacture improvements. In this area, a more active, less passive approach to LDKT is part of an overall, positive, supportive and structured service base. Activity in this way was proposed to include: 1. Development of a clear goal and vision 2. Leadership of the LKDT service to provide ownership of the tasks at hand 3. Management of ethical issues 4. Support (protection) of donors 5. Addressing infrastructure and capacity 6. Working within a best practice format 7. Promote initiatives to widen the pool of donors 8. Consideration of incentives for donors (although problematic ethically at this time this has been a parked proposal) This research and its conclusions has been widely accepted in New Zealand as a fair snapshot of the situation at hand at the time of writing. While there may be some disagreement with minor points, the overall thrust of the conclusions has lent weight to the argument for additional, target resources for this specific service group. The Ministry of Health, in allocating the funding from mid-2014, has been responsive to the majority of the research s findings; - Support and funding for a National Renal Transplant service to formalise the connections and relationships that already existed, but which would benefit from a strong structure - Establishment of a National Renal Transplant Leadership team, led by a Clinical Director with technical and administrative support - Establishment of targeted resources at referring and transplanting DHBs to address the search, identification, support and work up requirements of live donors francishealth.co.nz Page 16

17 - Requirement for the new resources to also focus on service initiatives, improvements and development / confirmation of clinical pathways and models of care to support consistent service delivery and best practice approaches - Requirement for the new resources to focus on development and confirmation of appropriate metrics to support key performance indicators and reporting, and to reduce the opacity of the service delivery The Live Kidney Donation Aotearoa (2016) report: This report for the Ministry of Health outlined a research / review project undertaken in the Counties Manukau region by Susan Reid and Sneha Shetty. The report identified the outcomes of a project (LKDA Project), specifically targeted at increasing the number of live kidney donations from the Pasifika and Maori populations in South Auckland. The target of increasing the number of live kidney donor transplants in the Counties Manukau District by 20 per year by the end of 2016 exceed the national target that is the subject of this review, and was supported by a service development plan that, with the exception of specific cultural considerations, was very similar to the stated objectives and processes outlined in the original funding request for the national live donor transplant services. The reported outcomes showed a significant increase in the total numbers of live kidney donor transplants for the region, but these fell short of the targeted volumes. However, perhaps one of the most important indicators of the impact of the project may be found in the increase in live donor offers per year in that region. Significantly, the areas identified for improvement by this document are: - Integration of the individual interventions to provide a seamless service. - Developing metrics around the Home and Kidney policy has the potential for renal service staff to increase the number of referrals for home-based education and peer support programmes. - Improved communication with the patients/donors - Development of a peer support programme to include post donation support, given the general feeling of abandonment by the donors post-surgery. - Reduction in the complexity of the work-up process for donors. It is not surprising that this document has identified many of the same challenges and barriers to progress outlined in the National Renal Advisory Board s paper and Dr Paula Martin s thesis Contract Documentation: As with all other funding mechanisms in public health, these services are supported by contracts for services between the Ministry of Health and the District Health Boards that are required to deliver them. The exception in this instance is that the service contracts for the services under review are not attributable to all District Health Boards, and where they are, they are additional to the District Health Boards annual contract for services, being targeted to a specific service requirement for a specified period of time ( funding years). Contracts are presented in the context of patient flow improvement projects, which is appropriate for the objectives of the funding. National Clinical Director; This position was designated to Dr Nick Cross and funded at 0.4 FTE for the first year, to reduce to 0.2 FTE in subsequent years. However, the reduction in FTE has not occurred. This was renegotiated relative to the francishealth.co.nz Page 17

18 workload of the role, including involvement in the development of the legislation to support reimbursement of expenses for living donors. The Clinical Director chairs the National Renal Transplant Leadership team and provides a single senior point of reference for the service at Ministry of Health level. Supporting roles for the Clinical Director; - Business Analyst; o The business analyst role has been applied fully according to the expectations of the contract. o This position is funded at 1.0FTE and provides development, support and management of the reporting processes. - Administrative Support; o This has been supplied by a private contractor, although the position is based in Wellington and has operational connection to the Ministry of Health, with the key tasks of support to the Clinical Director role being managed appropriately in that format. Donor Liaison Coordinators; These roles are well defined in the context of the service requirements and the contract documentation is set up to reflect the service requirements identified in the major papers supporting the funding request. While the overall objective for the new funding was to increase the number of live donor kidney transplants by 10, year on year, the volume is not referenced in the service requirements in the DLC (DHB) contract documents, and this is probably for good reason, relative to being careful to not set up a target expectation for a clinical workforce in a service that is equally, if not more so, careful about the risk of being coercive in working with prospective donors. The service aim, therefore is to increase the number of people who are interested in becoming live donors. Clearly, this is a difficult aim to measure, and the Donor Liaison Coordinators spoken to in the process of this review are clear in their view that this aim has begun to be achieved. Volume Growth Expectation: In July 2016, the Ministry of Health Acting Director, Service Commissioning, Joy Cooper, and the Clinical Director, National Transplant Service, Dr Nick Cross, sent letters to the CEOs of the three transplanting DHBs (Auckland, Capital and Coast and Canterbury), covering the Ministry s expectations in growth for live donor renal transplants through to The letters outlined the current delivery levels of live donor transplants by the respective DHBs being disproportionate to the populations that they serve. The clear expectation from the Ministry was that the transplanting DHBs should aim to achieve a proportionate balance in growth of transplant volumes. These were summarised in the letters as follows; francishealth.co.nz Page 18

19 Table 1: Actual and Expected Live Kidney Donor Volumes by Transplanting Centre Live Donor Plan Actual Capital & Auckland Year Coast Canterbury National Auckland National 2012/ / / / / / / / There is therefore a clear expectation on the Auckland Transplant service to increase the volume throughput for transplants, and as indicated by the letter to the CEOs, this is of significant importance to the capacity planning for the future, initially through to Comment: It should be noted that a requirement to increase volumes across the country, supported by the funding of specified positions to support attraction and support of donors, family and whanau, does not automatically also increase the operating list / postoperative care capacity to deliver the donor nephrectomies and transplants in the respective centres. The Ministry s identification of the need for capacity planning in this area will continue to be important to ensure that any increases in donor acquisition are met with requisite resources to complete the transplant processes in a timely and efficient manner. francishealth.co.nz Page 19

20 6. Implementation of the funded services: Once the funding had been agreed and announced, the allocation of those funds and the associated implementation was able to commence. However, as noted by the Minister in his sign-off for the funding, the implementation timing was very tight. The new roles were not being placed into greenfields environments, but needed to fit within, and alongside currently functioning service teams and resources. Because of this, the uptake timing of the service funding, being directly relative to the individual DHBs preparedness to commence, was quite variable. DHBs: Uptake of funding for Live Donor Renal Transplant Services Auckland Capital & Coast Canterbury Counties Manukau Hawke s Bay MidCentral Northland Southern Taranaki Waikato Waitemata July 14 Aug 14 Sep 14 Oct 14 Nov 14 Dec 14 Jan 15 Figure 2: Timing of uptake of funding by DHB Deployment of Donor Liaison Coordinator resources: The deployment of Donor Liaison Coordinator roles is presented relative to full time equivalents (FTE) applied, and whether or not these are job share positions. One District Health Board (Auckland) has chosen to not specify which of its staff work in the defined roles. The Ministry of Health, as funder, has expressed some concern as to the variability in allocation of the roles, as well as the lack of specificity as represented in Auckland DHB. There may be some mitigation for the situation to be found in; a) The resource base already in place in the DHBs that received the funding b) The nature of the set up of those clinical teams c) The tight implementation timeline for the funding and associated services (see Figure 3 below) francishealth.co.nz Page 20

21 Arrangement of DHBs for Provision of Kidney Transplantation Services DHBs WITHOUT comprehensive dialysis services AUCKLAND RENAL TRANSPLANT GROUP Bay of Plenty DHB Lakes DHB Tairawhiti DHB WELLINGTON RENAL TRANSPLANT GROUP Hutt Valley DHB Nelson Marlborough DHB Wairarapa DHB Whanganui DHB SOUTH ISLAND RENAL TRANSPLANT GROUP South Canterbury DHB West Coast DHB Waikato DHB DHBs WITH comprehensive dialysis services Counties Manukau DHB Waitemata DHB Northland DHB Taranaki DHB MidCentral DHB Hawke s Bay DHB Southern DHB Transplanting DHBs Auckland DHB Capital & Coast DHB Canterbury DHB Key: Designated DLC s 1.0 FTE: 0.5 FTE: Job Share: / DLC not specified: / Figure 3: DHB Transplant Resources - Donor Liaison Coordinator Deployment One of the key elements in setting up new roles within funding initiatives is the foundational expectations the defining objectives for the role. In this instance, the service description in the contract outlines that the aim of the Donor Liaison Coordinator (DLC) is to increase the number of people who are interested in becoming living donors. This aim is deliberately defined loosely, given the need to ensure that there are no targets applied to individuals that could deliver an incentive for them to enter into coercive behaviour to attract and confirm donors. The roles are therefore generally passive in nature, which is standard for both living donor interactions and those with family and whanau of deceased donors. In addition, issues that might prevent progression to transplantation are not within the control of the Donor Liaison Coordinators. In terms of the contractual expectations between the Ministry of Health and the District Health Boards, commentary from the Ministry has highlighted an expectation for development of exclusive DLC roles, while the reality of the process has seen these roles applied differently around the country. The Ministry s desire for exclusive, defined roles and personnel is found in the reporting template, which seeks response from the reporting DHB identifying the incumbent Coordinator. As it stands, the DLC role has been applied in each funded DHB relative to the baseline services and resources in place, i.e. not all DHBs are created equally in this respect, and their levels of readiness to set up and deploy the new roles were evident in the delayed commencement of the contracts in most DHBs Allocation of Funding: The overall landscape of renal transplant services in New Zealand is not a level playing field, and due to geographic and demographic variables, budgets and resources, is unlikely to ever be so. francishealth.co.nz Page 21

22 In the course of communications with the majority of the DHBs, it has been regularly noted that, while the new funding was very well received in terms of level, and intent to improve services, the timeline proved challenging. The view of this report is that, given the tight timeframes and the need to respond to internal and external pressures, the new funding allocated by the Ministry of Health in 2014 was adequately distributed at the time. However, this meant that there would be some disparities due to the unevenness of established resources and workloads. The initial service specification for the roles was therefore perhaps too generic. The implementation suggests that DLC roles, as stand-alone positions, are probably more relevant to referring DHBs, while in the larger service teams in the transplanting centres, the overall workload may require a blending of tasks between DLC and renal transplant coordinators. The challenge in this context is that anecdotally the living donors progressing through the work-up process have reported a very high level of satisfaction with the connection to the DLC role, which may lose some of its efficacy if there are multiple staff working in connection with a living donor. The simple split of FTE expectation relative to the funding 1.0 FTE at RN level 4 salary level for transplanting DHBs, and 0.5FTE for referring DHBs, has meant that some DHBs have been able to allocate specific staff to those positions (meeting the expectation from the Ministry), while others have not preferring to complement the overall transplant resources. It is informative that the DHBs that are in the second group, namely Auckland DHB and Waikato DHB, are both affected by significant workload challenges. Auckland has seen an increase in overall transplant workload in 2016 that is continuing into 2017, while Waikato s challenges arise from the nature of their regional connections the burden of coordination is across the widest geography and population of the referring DHBs. Where the DLC role has been funded and applied in some of the smaller DHB renal and transplant support teams, the new resource has provided specific additional capacity that is able to focus on the live donor education, acquisition and support tasks. In most of these cases, the DLC is also a part of the service team, covering a range of tasks that are not specific to the live donor caseload. This is entirely appropriate in well-functioning clinical teams, and provides for a shared responsibility that delivers service and caseload understanding and coverage for such challenges as staff leave and other absences. Table 2: Donor Liaison Coordinator Role Deployment DHB FTE funded How it has been applied Auckland 1.0 Added into total Renal Transplant Coordinator team. Two staff have been assigned the portfolio of Donor Liaison Coordination, but this is not an exclusive assignment as they also support recipient workup processes. Each Coordinator in the Renal Medicine team has responsibility for a geographic area, but those with DLC portfolios focus on living donor workup requirements. The focus of the DLC role in ADHB appears to be more on the living donors from referring DHBs rather than living donors from within the ADHB service area. This may indicate issues with referral pathways and adherence to agreed work-up plans by the referring DHBs rather than actual ADHB workload, but this is worth further consideration. Capital and Coast 1.0 Job share between two staff (0.2 and 0.8FTE), with one DLC focussing almost exclusively on live donors. Canterbury FTE DLC, but with some shared live donor activity with Renal Transplant Coordinator. Balance of 0.5 FTE to Psychologist targeted at supporting donors through decision and workup francishealth.co.nz Page 22

23 DHB FTE funded How it has been applied Counties Manukau 0.5 DLC functions as specific role who also works within the Renal Transplant team with recipient workup Hawke s Bay 0.5 New resource, single staff member added into small team. Works closely with Nurse Practitioner in Renal Service MidCentral 0.5 Additional FTE to prior team structure. Works alongside another RN Northland 0.5 Adjusted team structure, with CNS level staff member picking up DLC role (albeit at 0.4 FTE to cope with wage level of CNS vs. level 5 RN) Southland 0.5 New 0.5 FTE role but has taken on Transplant Coordinator role overall as well. Previous incumbent was not a health professional Taranaki 0.5 This is a job sharing arrangement (0.4 and 0.1FTE respectively) to provide for shared responsibility and better coverage of small volume of live donor work Waikato FTE added into the 2.5 FTE Transplant Coordinator group Waitemata 0.5 Specific DLC role with strong focus on the living donor participants Impact of the new roles and services: The following table summarises commentary from the reviewer s discussions with members of the clinical teams in each region. Table 3: Commentary: Deployment of DLC Roles DHB Comment: Benefits Challenges Auckland Capital & Coast Canterbury Counties Manukau Hawke s Bay Increase in overall team capacity to work with live donor services. Funding not allocated to a specific staff member, but portfolio approach picked up by two staff at around 0.5 FTE each Enhances the team approach, and provides a spread of capacity. Team overview of donors in workup blended role. Somewhat blended roles between coordinators, with one taking a primary lead for live donors. However, there are shared activities and supports which are appropriate to the size of the team. The Psychologist role is novel in this context as a targeted resource Prior funding for LKDA project has meant that the structure of the team was perhaps more constructed. DLC activities are shared across the team. Presence of a Nurse Practitioner clinic supports the transplant team as a whole. New resource added to DHB transplant team. Works alongside Nurse Significant increase in overall transplant services through 2016, continuing into 2017 has meant that DLC roles are challenged by the total transplant activity which has been shared across the whole team, with little or no ability to delineate the role due to that workload Challenged by workload associated with increased general interest in donation after media reports and other presentations. This is a consistent issue across most DLCs. Management of new interest as above. Access to operating theatre lists for transplants in general, with requirement to liaise and organise across multiple services. Overall the majority of the workload is dealing with the immediate workload. For the DLC, 10% of time is taken with family meetings. Reported that there is a poor connection with primary care does not appear to be any commitment to, or understanding of the requirements of the service at primary care level. Overall health literacy challenges provide significant workload in working with both recipients and donors. Referring to two different transplanting DHBs with different expectations of workup processing can be francishealth.co.nz Page 23

24 DHB Comment: Benefits Challenges MidCentral Practitioner. Addition of DLC role has formalised activity that was managed by the small team originally. Now a far more constructed, proactive management approach with better process coordination for prospective donors and those going through workup. Now more able to attend meetings outside hospital and office hours such as family discussions and community group presentations. challenging. There have been some challenges related to communications with Auckland DHB transplant team (see discussion under communications in section 6.4) Working with transplanting DHBs and managing work up of donors according to their requirements is variable. Different requirements between C&CDHB service and Auckland DHB service. Auckland DHB has a tighter framework and set of criteria and workup requirements that can be difficult to manage from a distance. Northland The team has a focussed, senior RN as DLC, who also works in the team context across the range of services. Takes the lead on DLC tasks but is not ring-fenced. Visiting clinic by ADHB team is successful and important. Southern A small overall transplant team, with only one coordinator covering both deceased and living donor transplant service requirements. Functions appropriately in this context. The previous coordination role was undertaken by a competent, but nonhealth professional administrator. Due to the specific DLC role and resources, the relationships with diagnostic teams has meant that response times and understanding of requirements is much improved. Very good communications with CHCH clinical team. Taranaki This is a job sharing arrangement (0.4 and 0.1FTE respectively) to provide for shared responsibility and better coverage of small volume of live donor work The Northland team has identified that there are timing challenges related to access to clinic appointments and associated workup processes. Many local donors are donating for patients in other DHBs, meaning that response time from the other DHBs is key to maintaining the donor s engagement and the timeliness of the overall process. In this respect, delays are evident, particularly with ADHB clinical team workloads. Taranaki is a small service that is quite remote from the transplanting DHB, Auckland. Managing donor workup from a distance is a challenge. Communications with ADHB transplant team are not always responded to quickly. However, it is acknowledged that the ADHB team have a large workload. (see discussion in communications discussion in section 6.4 ) francishealth.co.nz Page 24

25 DHB Comment: Benefits Challenges Waikato Waitemata Reports of better work up processes, less delays for all parties. DLC role is clearly delineated, with little crossover with transplant coordinator. Close relationship with ADHB Transplant team. Coordination aspect has a more complex requirement due to Waikato DHB s regional uptake and demographics. Managing and organising access to clinics, diagnostics and other appointments for donors and recipients who may be up to six hours away by car is problematic and demands more input. Some challenges accessing workup resources in the context of ADHB s requirements and timelines. Processes around clinic access, response letters, diagnostic procedures and clinical meeting requirements mean a significant waiting time accrues. Minimum time frame between 8-12 months while the mean time is around months Achievement of the objectives of the funding: Given the responses to the online survey from both consumer and sector stakeholders, there is no doubt that the additional resources have had a positive impact for the consumers as better connection and relationship management and process support, for the service sector, as overall better management of limited resources and support for overall transplant activities. However, from a KPI point of view, the stated objectives of the funding included: - For the overall service: realisation of an increase of live donor renal transplants by 10 per annum, year on year - For Donor Liaison Coordinators: Increase in the number of people who are interested in becoming living donors The former is easy to measure, while the latter has proved problematic for the Coordinators to capture (See further discussion in Section 6.5). Objective 1: Increasing the number of live donor renal transplants by 10 per annum, year on year: The following table, summarised from the Kidney Transplant Activity New Zealand Calendar Year 2016 report from the National Renal Transplant Service: Table 4: Summary - Live Donor and Total Transplants to end 2016 Target Observed (% increase) Year Live Donor Total Live Donor Total (22%) 138 (19%) (2.8%) 147 (6.5%) (10.8%) 174 (18.4%) francishealth.co.nz Page 25

26 The summary data above shows variable growth in transplant numbers, but it is very much a growth curve. The volumes of live donor transplants is yet to match the target numbers sought by the Ministry of Health, but with every referring and transplanting centre reporting greater volumes in both live and deceased donor workup in the last 12 months, with reports of further growth in early 2017, this provide reasonable confidence to the outside observer that the growth objective is able to be achieved. Taking the period from 2013 to end of 2016, the mean increase is around 8 additional living donor transplants per year. Objective 2: Increase in the number of people who are interested in becoming live donors Logically, this objective is a mix of acknowledgement of initial contacts through to conversion of interest to actual donation. The reporting currently delivered to the Ministry of Health on a quarterly basis does provide for four categories of liaison with people interested in becoming donors, with 16 sub-categories for actual activity or outcome. The following table reports for the last quarter of 2016, as an example; Table 5: Donor Liaison Activity and Outcome Reporting Contacts Donor Assessment Decision. Donor Work Up. Donor Outcome. Counties Hawke's Donor Liaison / Activity / Outcome Auckland Canterbury Capital & Coast Manukau Bay MidCentral Northland Southern Taranaki Waikato Waitemata 1 Donor Recipient Referred Donor Self Referred (non directed) Donor Group or Family Session referred Recipient On Dialysis Recipient NOT On Dialysis Donor Not Suitable Delay requested by donor Delay for Donor Medical Reason Delay for Recipient Medical Reason Restart Donor Assessment Donor Transferred Out Donor Withdraws Financial Reason Donor Withdraws Personal Reason Donor Not Required Donor Acceptable Donor Unacceptable Service Characteristics in summary: 1) Characteristics of the services (Donor Liaison Coordinator focus) Both anecdotal reports from the DLC group and their colleagues, as well as commentary from the consumers (via the online survey) highlight the benefit of having individuals focussed on the requirements of the prospective and confirmed live donors in the renal transplant services. In DHBs where the roles are specifically allocated to an individual, the strength of the position is not limited to the live donor group only. There is a reasonable assumption that any additional resource in this service group would make a positive difference but it is the opinion of this review that service improvement has reached beyond this baseline. Key improvements include: - Patient / participant focus: o Donors report experiencing a clear, even focus of attention from a clinical team member that provides them with confidence in the process and the quality of the service overall o This is particularly evident in smaller referring centres where a lack of the specific focus on the donor going through workup meant that the workup process was being coordinated and managed by the transplant centre (as an example, Taranaki and Auckland DHB processes prior to the DLC position being implemented). francishealth.co.nz Page 26

27 - Clinical team involvement: o In referring DHBs, particularly those with small clinical teams, the tasks associated with live donor acquisition and management were included in the work of the medical, nursing and administrative staff. These tasks were often delivered in an ad hoc manner when there was capacity to do so. This meant that live donor work was lower on the priority list. Since the implementation of these roles, most DHB teams report that the addition of a specific resource has been significantly beneficial to the donors, their family / whanau, and to the overall clinical team. Less time is wasted, work up processes are managed in a more project management format, meaning that there are efficiency gains at the same time as the building of a better live donor base for the transplant services. - National Consistency: o There is anecdotal evidence of better understanding between referring and transplanting DHBs with respect to work-up requirements and process management o In general, the role of the referring centre is much easier, particularly when there is a spread of referral work to more than one transplanting centre. This reduces the inefficiencies associated with needing to manage workup tasks in different ways according to the requirements of the transplant centre, as was previously the case. o Progress has been made towards a nationally consistent work-up process which is important given that live donors can be connected to recipients in other regions. - Relationship development and management: o The focus of the DLC role has, in many DHBs, provided capacity for a more direct, collegial relationship between the nursing team in the renal or transplant service with the various diagnostic support services and clinical teams in other services that are key to the management of the live donor s workup in a timely manner to the direct benefit of the donor, who, due to generally good prior health history, is not a good navigator of the health system in its secondary and tertiary presentations. This cannot be overstated as a mechanism that is likely to support completion of donor participation to eventual transplantation, which is the focus of the funding. - Better spread of live donor workup: o The experience of the Auckland team has been that the additional resources in the referring DHBs have reduced their need to coordinate living donor workups from Auckland, and that this is enabling more time to be spent on local donor activity Summary of Service Variations: - Deployment: o Various DHBs have applied the service funding according to existing resources and resource gaps. (See tables 2 and 3 above) - Coordination of prospective donors active or passive? o There is some variation between services in terms of taking an active or passive approach to coordinating the workup requirements of a live donor. Some centres report a quite passive approach to communication with prospective donors such as in Christchurch, where it was reported that the coordination team would wait to hear from prospective donors regarding appointment and diagnostic attendance, while others are more direct and provide regular touching francishealth.co.nz Page 27

28 base communications. The second group also consistently explained that they were very careful to avoid coercive or directive behaviour in these communications. - Accessing prospective donors: o Not all coordinators undertake home visits to meet with recipients and their family / whanau for the purpose of supporting live donor participation. o At least two services report attendance at community events and presentation to community groups as part of their outreach to the community on the subject of live donation. o Both Auckland and Waikato groups report that home visits are not easily resourced and supported; For Auckland, this is due to the overall workload and the requirement for home visits to take place after hours For Waikato, the geographical spread of the region s uptake area ensures that the Coordinator is not able to be available for all areas - Working between referring and transplanting DHB services: o For referring services that work with more than one transplanting DHBs, it has been noted that the requirements of the Auckland DHB Renal Transplant team with respect to the workup process, sequencing and criteria are more closely controlled than, for example, the Capital and Coast DHB team. Comments in this area were closely followed by acknowledgement that the Auckland DHB team have a unique workload relative to other transplanting DHBs. However, the differences in requirements, to whatever degree, provide a challenge for the small live donor coordination teams in the regions, particularly with respect to assisting the prospective donor to navigate a workup pathway that may require travel to and from the referring DHB diagnostic and clinic services, if the donor lives remotely o A corollary to this discussion has been a consistent remark from DHBs referring to the Auckland Renal Transplant service, that communications such as s are not responded to in a timely manner. Once again, it has been rapidly acknowledged (by the person(s) raising the concern), that this is likely to be due to the workload in Auckland, but the effect of delays in response accrue to challenges in the referring centres in terms of building confidence in the prospective donors that the system will function smoothly and that their time will not be wasted. - Work-up management by Donor Liaison Coordinators; o Potential further enhancements raised included that in regions where there were nurse-led clinics, or delegation of the assessment to DLC staff within scope of practice, the potential delays for living donors in the work up process appear to be reduced. o The progress towards standardisation of work-up requirements and processes from the transplanting DHBs has been identified by regional DLC staff as a significant improvement, although there is still some distance to complete standardisation, given that this may or may not be fully achievable - Communications; o As has been raised above, with a national service, the quality of communications between centres is key to the success and timeliness of services requiring significant levels of coordination. Regional centres report improvement in communication with their transplanting centres, and this view is reciprocated. The development of increased standardisation in work-up processing no doubt has a positive effect in this area o However, there are a small number of anecdotal reports of challenges associated with communications reaching into the Auckland Renal Medicine team, related to sharing of case francishealth.co.nz Page 28

29 o information, and responsiveness to service queries and support needs. In general, referring centres acknowledge the challenges faced by the busy Auckland team. One particular scenario has been raised that provides this review with significant concern, in that an sent to the Auckland service from Hawke s Bay (with case notes scanned and attached) was apparently not received by the address in Auckland, causing some delay to the work-up process for the Hawke s Bay donor. This subject has been addressed in more detail, with associated recommendations in Section 8: Findings and Recommendations. francishealth.co.nz Page 29

30 6.5. Service Reporting The reporting of the live donor renal transplant services exists as a new subset of the overall renal transplant service reporting. There are four main components in the reporting hierarchy: Report Content Frequency Reported by ANZDATA Compiles and reports the incidence, prevalence and outcome of dialysis and transplant treatment for patients with end stage renal failure Annually Australia and New Zealand Dialysis and Transplant Registry Kidney Transplant Activity New Zealand Deceased and living donor transplants by Transplant Centre - Transplants per million population - Target and observed transplants - Transplants per 100 dialysis patients / unit / DHB of domicile - Transplants by DHB of domicile and Donor type - Transplant variations (multi-organ, ABOi, Kidney Exchange and Dual Kidney transplants) Annually Clinical Director, National Renal Transplant Service Quarterly Improvement Management Reports 1. QIM 1- Proportion of living donor recipient pairs who receive surgery within 120 days or less of being both accepted by transplant service AND ready to proceed 2. QIM 2 - Proportion of kidney transplants from living donors occurring as pre-emptive or early kidney transplants. In partial rollout form: 3. QIM3 -Proportion of end stage kidney disease (ESKD) recipients considered for transplant assessment before commencing dialysis 4. QIM4 - Duration of recipient assessment measured from the time that referral for transplantation assessment is made to completion of assessment 5. QIM5 - Duration of living kidney donor assessment, measured from the date of start of assessment to completion of assessment. Quarterly Renal Services at each DHB Donor Liaison Coordinator Reports 6. Donor Liaison Coordinator Activity - Contacts - Donor Assessment Decision - Donor Workup - Donor Outcome Quarterly Donor Liaison Coordinators, or local staff, each DHB Ratings of Delays in Living Donor Workup The ANZDATA output is outside the scope of this review, but is informative relative to the overall components and outcomes of the services. The Annual report from the Clinical Director is equally at a macro level, relative to the purposes of the living donor service funding. francishealth.co.nz Page 30

31 This review focuses mainly on the Quarterly Improvement Metric (QIM) and Donor Liaison Coordinator reports. The QIM reporting process has been through a few iterations as the service and the Ministry of Health seek to refine the report content, process and outputs in an effort to gain a clear view of the service for forward planning purposes. The QIM 1 and 2 reports have been in place since The annual data is collated and published following NRTLT review and sign off by the Clinical Director. Additional QIM reporting sections 3-5 have been trialled in limited rollout and are under review for nationwide release. It is understood that there are some concerns from various clinical teams regarding the level of reporting required. The Donor Liaison Coordinator reports are intended to capture activity in the DLC roles, including specifying delays to achieving specific components of the work-up process. This reporting process has been reviewed in the last year, with the updated reporting process and template in place from July Currently there are two complete quarters of reports from this updated process (July Sept and Oct Dec 2016). The QIM and DLC reporting processes are supported by the National Renal Service s Business Analyst, Dale Gommans, based in Christchurch. These data are important to the quality of the service, but do not appear to deliver any information regarding the actual workload of the Donor Liaison Coordinator role, which will be important for resource and service capacity planning alongside the QIM reporting. See Section 8 (3) for further discussion and recommendation on potential additional reporting in this area. Example output DLC Quarterly Reporting: Table 6: DHB Summary Data - July - Sept 2016 This table identifies key milestones and decision points between commencement and completion of participation in the transplant service with a focus on living donors. Interpretation of this data: francishealth.co.nz Page 31

32 This data table provides a quarterly snapshot of the living donor throughput for each DHB in the quarter. Supported by the second data table (below), it provides a range of defined points that deliver measurements of service and system performance. This in turn supports service development decisions through identification of barriers, challenges and delays that may or may not be able to be addressed. Table 7: Ratings of delays in living donor workup - July - Sept 2016 The process of rating of barriers in the living donor work-up process delivers metrics at specific service delivery points. This in turn provides a snapshot of the overall process and requires the reporting groups to consider the delays in their service access. At National Renal Service level, trends in delays in work-up steps should provide focus for strategy and application of resources to correct ongoing challenges. It is therefore a valid and appropriate reporting process that should also focus local teams on delays in the process at the individual living donor / recipient level. That data would not be easily collated or reported at national level. francishealth.co.nz Page 32

33 7. What Do The Stakeholders Say? Online Survey Results The online survey was made available for a short period of time to provide for direct input, commentary and response to specific questions by the review. The survey was delivered using the Survey Monkey service, and was open initially for a working week, but this was extended to 10 days to assist with a further group of consumers (through the Kidney Society) to access the survey. Importantly, given the timeframe and scope of this review, the survey should not be considered as research level activity, but more as market research seeking to take the pulse of the sector and its key stakeholders Consumer Responses: The review sought the opinion of consumers (donors, recipients, family/whanau) who had participated in the services from early 2014 to the present day, in order to capture that group that had the most experience of the new resources and their impact on the services. Donors were not required to have finally committed to donation, or to have completed the donation. This allowed for capture of information from those who were part of the initial objective of the funding that is, to increase interest in live donor kidney transplantation. Key metrics: Question 1: Question 2: francishealth.co.nz Page 33

34 Question 3: Summary of Comments Q3: For those who chose to make further comments, these were overall positive regarding the notion of a specific service to support recipients and donors through the process. Other subjects included improvement in media coverage, and adjustment of policies related to deceased donor opt-in / opt-out decisions. One response was brief and to the point regarding the leadership, suggesting that getting the right people to drive it was a required change. There was no other commentary in this area. Question 4: Question 5: francishealth.co.nz Page 34

35 Summary of Comments Q5: The comments for this question were in two groups; the first being those concerned with overall donor numbers and delays in reaching transplant surgery, while the second group was more concerned with the structure of the leadership team. In this area, contributions suggested that the participants in the leadership team were probably representative of the stakeholders, but that the terms of reference should be reviewed to include policy and strategic issues to address live and deceased donor rates in New Zealand. In addition, specific comment was made regarding the NRTLT being solely focussed on live donor renal transplantation, and that Organ Donation New Zealand and deceased donation service components were not in consideration by the NRTLT. Note: The Terms of Reference for the NRTLT include mention, albeit briefly, of both deceased and live donor donation, and the membership does include representation from ODNZ. Question 6: Summary of Comments Q6: This section is unequivocally positive regarding the role of the Donor Liaison Coordinators. Donors entering and working through the donation workup process are clearly finding the range of coordination support, careful guidance and technical support to be key to the success of their participation, whatever the outcome. The only negative comments related to the time it takes to work through the process, and that this could be mitigated by providing more hours for the Coordinators overall. francishealth.co.nz Page 35

36 Question 7: Summary of Comments Q7: Respondents identifying in these group reported very good and appropriate support. One comment suggested that having Maori and Pasifika staff in the roles would be an advantage in this area. Question 8: Summary of Comments Q8: These comments can be best summarised in the following table: Subject / Suggestion: Number of comments: No particular view of any improvements 4 Positive about kidney exchange programme / joining Australia s pool of donors 3 Increased advertising required 1 Changes to improve financial support are of significant benefit 4 Provision of an independent psychologist 1 Looking forward to pig kidney research outcomes 1 Buddy system suggested (no further detail) 1 francishealth.co.nz Page 36

37 Question 9: Summary of Comments Q9: This group of responses is logically the most wide ranging. Overall, comments included specific suggestions alongside praise for the services, the staff involved and NGOs such as the Kidney Society, and concern that more resources should be applied where Donor Liaison Coordinators are part-time. The specific suggestions included the following; - A resource should be developed to assist employers to understand the challenges that face a live donor, from work-up through to the requirements of post surgery care and support - More promotion of live kidney donor outcomes would increase the pool - Any way in which the process can be managed more quickly - A process to review the supporting information and documentation is required to ensure that it is accurate and up to date. In addition the content needs to be accessible to new participants to assist with clarity leading to informed decision making. Standardisation of information nationally should be a clear objective. - Support for donors following donation needs to be looked at especially for those who are non-directed - The use of social media should be reviewed and seriously considered as a method for reaching prospective donors. This could include advice given to transplant waiting list patients on how to address the subject of donation with family, whanau and friends. francishealth.co.nz Page 37

38 7.2. Sector Responses: Key metrics: Question 1: Question 2: Question 3: francishealth.co.nz Page 38

39 Question 4: Summary of Comments Q4: The scaled responses to Question 4 appear careful, in that there are no significantly dissenting views, but neither are they strongly weighted to unequivocal praise. This perhaps suggests that the view of the sector is tentative at present, acknowledging that the service s contribution is in its early stages. The list of comments is consistent with this summation, including some key points as outlined below; - Progress towards standardisation of processes and pathways is under way, and important - Development of key performance indicators and associated reporting mechanisms has supported a more active approach to service initiatives that will lead to achievement of the Ministry of Health s stated objectives for live donor transplants - Sharing of information (about service improvement processes) between centres is taking place, but is not distributed as well as it might be - Donor Liaison Coordinators should regularly receive copies of the NRTLT meeting minutes and associated documents to ensure that they are kept up to date with a national overview Question 5: francishealth.co.nz Page 39

40 Question 6: Summary of Comments Q6: Generally positive response to the question and the comments reflect this. Overall it is agreed that the structure and representation is appropriate. One respondent queried the value of a two level committee system (Strategic Group and Operational Group). Question 7: Summary of Comments Q7: All respondents report an increase in interest in live donor participation in transplants, with a resulting increase in workload associated with contact management through to work up processing. This was consistent across referring and transplant centre-based respondents. Centres with little prior resource (i.e. smaller referring DHBs) report significant increase in workload, as do those larger centres with more staff. Access to a specified resource to support the live donor participants is identified as key to the success of the process. Of interest, this last aspect was also identified by the consumer group as being of significant importance. francishealth.co.nz Page 40

41 Question 8: Summary of Comments Q8: It is not surprising that most respondents suggest that increasing the resources in this area, or at very least providing some certainty to the longer term support for the roles would be key. Other topics identified: - Provision of specific education and training for the DLC roles would assist with supporting patients with chronic kidney disease to raise the topic of live donation with family and whanau. - Support for more community and in-home family / whanau connection through flexible work hours - Better connections with primary care providers to ensure that donation / transplantation is raised at an earlier stage for the patients - Improvement of resources to support reduction in waiting times for assessments, clinics and donor work-up - Flexibility in larger centres where the live donor coordination role can be shared around a range of staff, given high workloads in other areas Question 9: Summary of Comments Q9: The comments in response to this question were quite wide ranging, blended with commentary about the current status, and are summarised in the following groups: - Continued support for the DLC roles is essential - Improvement in identifying and attracting living donors; o A cultural shift to discuss transplant and living kidney donation first and as the preferred treatment has been effective in increasing live donor transplant rates o Noted that the home visits undertaken by some teams are highly effective, particularly as they are generally after hours to accommodate the donors / recipients, family and whanau. francishealth.co.nz Page 41

42 o Noted also that this is not possible in some areas due to geographical challenges and overall workload. o Use of internet links, videoconferencing facilities - Improvement in standardisation across the country; o This is making things generally easier when working across multiple transplanting DHBs, but is not yet totally consistent which would make life easier for referring DHB staff and living donors o Better access to diagnostics and clinics between DHBs would address some of the delays currently being experienced o Improved access to psychological support for donors and recipients is essential o Consideration could be given to running day clinics that allow the potential donor to come into hospital for a day and have the majority of their donor assessments tests done, to decrease waiting times for test and to decrease stress placed on potential donors who may have to take time off work o Noted that work on nationally agreed live donor assessment guidelines will be finished in April 2017 o Better connection with the Australian services - Better information support for prospective living donors; o Consistent praise for the Counties Manukau information booklets as being of high value, and that resources need to continue to develop and disseminate these - Paired Kidney Exchange and connection to the Australian Kidney Exchange is a valuable step. o Sharing of supporting information, patient resources and processes between New Zealand and Australia would benefit Question 10: Overall Comments: Summary of Comments Q10: This final section attracted high levels of support for the decision making and resourcing of the live donor renal transplant service as a whole, and for the DLC roles particularly. Commentators expressed concern at the potential loss of traction in building live donor transplant numbers if the resources were reduced or removed. Overall Summary: Consumer and Sector Responses: In summary, the response from the consumers was complimentary and positive towards the overall service provided by the National Renal Transplant Leadership Team, and the Donor Liaison Coordinator roles that were funded by the Ministry of Health in francishealth.co.nz Page 42