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Special Focus: Malignant Hematology in Ontario

Malignant hematology includes various cancers of the blood including lymphoma, leukemia and multiple myeloma. It is a complex and evolving clinical area that requires intensive resources, specialized facilities and highly trained healthcare providers. 

Hematopoietic cell therapy (HCT), also known as stem cell transplantation, is an essential component of treatment for many people with hematologic malignancies and other blood disorders. There are 2 types of HCT: autologous (auto), which uses the patient’s own previously stored stem cells, and allogeneic (allo), in which stem cells are donated by another person.

While hematologic malignancies are much less common than other cancers in Ontario, they use markedly more resources because of their complexity and specialized care requirements.

The Problem

It was an absolute crisis, the system was broken.

 

 

Patients were given additional rounds of chemotherapy just to try to keep them in remission due to month long wait times for transplant.

 

 

Member, Complex Malignant Hematology Patient and Family Advisory Sub-Committee

In 2015, the Ontario cancer system was at a critical point in its ability to deliver timely and high-quality care for people with complex hematologic malignancies. The need for complex malignant hematology services, specifically hematopoietic cell therapy (HCT) and acute leukemia care, had increased over time and was expected to continue to do so with advances in technology, expanding indications and eligibility criteria for transplant, and the aging population. There was insufficient capacity within the system to address this growth, resulting from constraints in physical space (e.g., specialized in-patient and day-hospital treatment areas), health human resources (e.g., physicians and other specialized healthcare providers) and supporting infrastructure (e.g., laboratory services, pharmacy).

The Auditor General reported that in 2015/16, wait times for Auto-HCT and Allo-HCT were significantly longer than the province’s target wait time, and a small percentage of these transplants occurred within the target. Capacity limitations led to some Ontario patients being sent to the United States for HCT, which was not optimal for patients, and extremely costly for the system. Additionally, provincial referral patterns were not clearly articulated and there was limited data on access to, and quality of, care.

Investments in People, Places and Partnerships to Provide Access to Timely, High-Quality Care

In 2016, the Ministry of Health convened the Complex Malignant Hematology-Hematopoietic Cell Therapy Consultation Group, made up of clinical experts and people with lived experience, to provide input to the government on the urgent changes needed to when and how patients access complex malignant hematology treatment in Ontario.

Through this process, the consultation group, in conjunction with Cancer Care Ontario (now a part of Ontario Health), the Ministry of Health, and regional cancer programs, put in place several long-term and short-term strategies that focused on:

  • improving patients’ experiences and access to specialized care
  • standardizing clinical pathways
  • expanding and improving physical capacity and space for care
  • facilitating health human resource recruitment and training
  • optimizing models of care for healthcare service delivery
  • implementing interim strategies to increase capacity and longer term strategies to support care closer to home
  • fostering a culture of collaboration and knowledge sharing amongst Ontario’s transplant and acute leukemia care facilities

A number of focused advisory groups were also formed to support this work. The collective result is more timely access to care for patients as close to home as possible, and the delivery of coordinated, consistent high-quality complex malignant hematology care across the province.

A table of experts met monthly. This was an effective method. The collective efforts of the group [Complex Malignant Hematology Consultation Group] have resulted in improved timely access to care for patients.

Member, Complex Malignant Hematology Patient and Family Advisory Sub-Committee

Building Infrastructure to Support Expansion

Since 2017, Ontario has made significant investments in capital expansion to ease capacity pressures and enhance infrastructure at existing transplant and acute leukemia centres:

  • Beds added at Sunnybrook Health Sciences Centre to accommodate acute leukemia volumes
  • Laboratory and pharmacy capabilities and beds expanded at University Health Network for enhanced Allo-HCT service delivery
  • Capital projects initiated at Hamilton Health Sciences and The Ottawa Hospital to expand space for beds, ambulatory clinics, day hospitals, pharmacies and laboratories to facilitate enhanced acute leukemia, Auto-HCT, and Allo-HCT service delivery
  • Established 2 biomarker reference centres to serve as quality leads and ensure timely testing
  • Capital expansions project planning at London Health Sciences, Sunnybrook Health Sciences Centre, University Health Network, and the Hospital for Sick Children to build on existing programs and serve additional patient populations

These investments have enabled more Ontario patients to receive hematopoietic cell therapy (HCT) closer to home (Table 1). In 2018/19, there were 738 Auto-HCT and 341 Allo-HCT transplants completed in Ontario, compared with only 505 and 198, respectively, in 2013/14. Since June 2019, no new referrals have been made for Ontario patients to go out of country for HCT, a marked improvement since 2016/17, when 45 people were sent to the United States for the therapy. As HCT volumes have increased in Ontario, there has also been a corresponding decrease in the time patients wait to receive their transplants (see Access to Hematopoietic Cell Transplant).

Table 1: Hematopoietic Cell Therapy (HCT) Performed Within Ontario and Out of Country, Year-Over-Year Volumes
HCT Type 2009/10 2010/11 2011/12 2012/2013 2013/14 2014/15 2015/16 2016/17 2017/18 2018/19 2019/20
Autologous (including Day+1 transfers*) transplants performed within Ontario 405 383 394 478 505 538 590 632 694 738 783
Allogeneic-related transplants performed within Ontario 80 81 79 65 78 91 116 137 149 153 219
Allogeneic - unrelated transplants performed within Ontario 79 77 104 104 120 115 138 144 199 188 133
Total Ontario 564 541 577 647 703 744 844 913 995 1,079 1,135
Transplants performed out of country 0 0 0 0 0 0 15 45 11 3 1
Total Ontario & out-of-country volumes 564 541 577 647 703 744 859 958 1,006 1,082 1,136

Abbreviation: HCT hematopoietic cell therapy

*Day+1 transfers refer to a model of shared care where HCT takes place at the transplant centre, and post-transplant care takes place at a partner hospital closer to the patient’s home.

Enabling Care Closer to Home Through Partnerships and Networks

In addition to capital investments, establishing provincial networks and collaborative partnerships across hospitals has been essential to expanding complex malignant hematology service delivery across the province. Not all hospitals provide the same level of services for patients, including acute leukemia services. While local and regional referrals, and collaboration between specialized healthcare providers and supporting service providers have always existed, applying a provincial lens to the organization of these networks and partnerships ensured a more cohesive and streamlined approach to referrals and shared-care.

Two examples of collaborative partnerships are the Acute Leukemia Shared-Care and the Day+1 Transfer models of care for patients who have received an Auto-HCT.

The Acute Leukemia Shared-Care model of care allows eligible patients to get a portion of their care at a specialized leukemia centre and the rest at a partner cancer centre closer to home. In the Day+1 Transfer model of care, a patient is transferred to a partner site immediately following Auto-HCT, so they can recuperate closer to home.

The benefits of both of these models include:

  • maintaining the provision of high-quality care while reducing the burden on the more specialized transplant and acute leukemia service sites
  • delivering a better patient experience through care closer to home
  • reducing travel pressures experienced by patients and their caregivers

Coordinated care between providers and hospitals is a key success factor to making these models of care work for patients and families.

As of October 2020, in Ontario, 6 service sites providing HCT and acute leukemia care are networked with 4 Acute Leukemia Service Sites and 3 supporting Acute Leukemia Shared-Care Partner Centres (Figure 1). Seven centres across the province share the care of post-HCT patients through the Day+1 Transfer model. The Day+1 Transfer and Acute Leukemia Shared-Care models of care are being expanded in Ontario as part of a comprehensive approach to coordinating service delivery through the Regional Acute Leukemia Service Plan, a 10-year plan to expand services and add HCT and acute leukemia service providers.

Figure 1: Complex Malignant Hematology Service Sites as of October 2020

Map showing the division of regional networks and the locations of service providers. See Figure Description for details.

 

To help plan for complex malignant hematology (acute leukemia and stem cell transplant) services, the province has been divided into 3 regional networks – South Western Ontario, Central Ontario, and Northern and Eastern Ontario. This map displays the division of regional networks and the locations of service providers. 

List of Regional Cancer Programs in Each Regional Network
Regional Network Regional Cancer Programs
South Western Ontario Erie St. Clair
South West
Waterloo Wellington
Hamilton Niagara Haldimand Brant
Central Ontario Hamilton Niagara Haldimand Brant
Mississauga Halton - Central West
Toronto Central
Central
Central East
North Simcoe Muskoka
Northern and Eastern Ontario Central East
South East
Champlain
North East
North West
Complex malignant hematology services are provided at the following sites
Hospital Stem Cell Transplant Site Acute Leukemia Services Site Acute Leukemia Shared-Care Partner Cancer Centre Systemic Treatment Centre
Windsor Regional Hospital n/a Yes n/a n/a
London Health Sciences Centre Yes (Auto and Partial Allo) Yes n/a n/a
Grey Bruce Health Services, in partnership with London Health Sciences Centre n/a n/a n/a Yes
Grand River Hospital n/a Yes n/a n/a
Hamilton Health Sciences Centre Yes Yes n/a n/a
Niagara Health Sciences, in partnership with Hamilton Health Sciences Centre n/a n/a n/a Yes
William Osler Health Sciences, in partnership with University Health Network n/a n/a n/a Yes
Trillium Health Partners, in partnership with University Health Network n/a n/a n/a Yes
Sunnybrook Health Sciences Centre n/a Yes n/a n/a
University Health Network - Princess Margaret Cancer Centre Yes Yes n/a n/a
Southlake Regional Health Sciences, in partnership with University Health Network and Sunnybrook Health Sciences Centre n/a n/a Yes n/a
Lakeridge Health, in partnership with University Health Network and Sunnybrook Health Sciences Centre n/a n/a Yes n/a
Kingston Health Sciences Centre Yes (Auto only) Yes n/a n/a
The Ottawa Hospital Yes Yes n/a n/a
Royal Victoria Regional Health Sciences Centre, in partnership with University Health Network n/a n/a Yes n/a
Health Sciences North Yes (Auto only) Yes n/a n/a
Thunder Bay Regional Health Sciences Centre n/a Yes n/a n/a

Investing in People

Health human resource planning is vital to ensure centres have the necessary expert clinical staff in place to deliver timely and high-quality care. To facilitate this, Cancer Care Ontario (now part of Ontario Health) recommended models of care for complex malignant hematology that focused on optimizing roles within the multidisciplinary team, and the use of care settings. In this way, providers can apply their full scope of practice, and care for eligible patients can shift from resource-intensive inpatient settings to the less-resource-intensive outpatient setting.

Implementation of these recommendations is in progress across the province; when fully implemented, these new models of care will advance service delivery and expand capacity for future patients. Funded training opportunities for physicians and other members of the clinical team supported these innovative, person-centred models:

  • Acute leukemia and HCT fellowships to increase the number of trained hematologists in Ontario
  • CMH/HCT-specific training for nurses to increase the number of nurses with this expertise in Ontario
  • Nurse practitioner mentorship placements at acute leukemia and transplant centres to facilitate knowledge transfer and build expertise at partner hospitals

Also, based on updated workload estimates, more funded hematologist positions were added to the system to support the enhanced service delivery model and associated volumes.

Measurement and Modeling

The comprehensive multiple stakeholder approach is what got us here. Without the Consultation Group and the multiple working groups, we wouldn’t have developed some of the measures used to monitor and understand the system today.

Member, Complex Malignant Hematology Patient and Family Advisory Sub-Committee

In 2016, there was a noticeable need in the system to expand quality and performance measurement to support quality improvement and capacity planning for complex malignant hematology (CMH) service delivery in Ontario.

The CMH measurement strategy prioritized:

  • the identification of key quality and performance measures
  • the development of validated methodologies and data sets
  • the implementation of standardized processes for data collection, reporting and monitoring across the province

Key quality and performance indicators now collected and reported across the province include clinically relevant wait times, laboratory turnaround times, treatment outcomes, and survival.

Another important component of the measurement strategy is the patient-reported experience measurement survey, Your Voice Matters – Acute Leukemia and Stem Cell Transplant. The survey, conducted in 2018, was developed and implemented to measure patient experiences across the CMH care continuum. The highest positive scores were reported in questions about planning for treatment, physical comfort and patient preferences. The lowest positive scores were reported in questions about emergency department visits, information and education, and psychosocial needs.

This comprehensive approach to measurement has enabled system planning and monitoring at a provincial level. These measures led to improved understanding of the system, creation of provincial targets and the ability to benchmark performance against comparable jurisdictions, all of which led to the development of several quality improvement initiatives.

Proactive system planning relies on a strong understanding of the expected numbers of patients who will require care in the future. With that information, services, including health human resources and capital planning, can be organized to meet the anticipated need. Acute leukemia and HCT demand modelling provides an improved understanding of current and future needs based on volume and capacity projections.

Focusing on the Future

Significant progress has been made in Ontario to enable timely access to care closer to home for people with complex malignant hematology (CMH). It is important to look to the future and prepare for advances in clinical care.

Chimeric antigen receptor (CAR) T-cell therapy is an emerging form of immunotherapy used to treat cancer. It involves extracting millions of T-cells (a type of white blood cell) from an individual with cancer and altering them in a lab to target the patient’s specific type of cancer. The T-cells are then given back to the person where they multiply, attack and destroy the cancer cells.

Ontario is at the forefront of providing CAR-T cell therapy for complex blood disorders. Only 4 sites in Ontario – University Health Network, Hamilton Health Sciences, The Ottawa Hospital, and the Hospital for Sick Children – are providing CAR T-cell therapy based on Health Canada approved indications. The demand for CAR-T will only continue to increase in the province as this promising therapy evolves. Ontario Health (Cancer Care Ontario) is building on the lessons learned from planning for and addressing complex malignant hematology and transplant needs, and applying them to prepare the CAR-T program for the future.

Tremendous work has been done since 2015. The collective efforts have resulted in improved timely access to care for patients closer to home and the development of strategies to ensure coordinated, high-quality CMH care across the province.

Member, Complex Malignant Hematology Patient and Family Advisory Sub-Committee

Opportunities continue to exist to build upon successes to date. Ontario Health (Cancer Care Ontario) must continue to expand quality and performance measurement to increase the breadth and timeliness of data collection.

Future demand and capacity must also be prioritized as the population grows and new therapies make more people eligible for treatment. Without the addition of new service sites and updated care models, the gap between capacity and demand is projected to grow, and patients will continue to travel long distances to receive care.

Ontario must continue to focus on expanding services, building strong networks, and standardizing practice to make sure patients with hematologic malignancies have timely access to high-quality care as close to home as possible.

A lot of effort has been put into where we are today. We cannot take our eye off the ball, we need to ensure funding remains adequate and continue our focus on resource development.

 

 

Sustainability is key – we need to continue this work and do even better.

 

 

Member, Complex Malignant Hematology Patient and Family Advisory Sub-Committee