Creating more responsive care for cancer patients

In 1943, the Province of Ontario created the Ontario Cancer Treatment and Research Foundation, which was transformed into Cancer Care Ontario in 1997 and has since worked to improve the performance of the province’s cancer care system. The growth of data and analytics has allowed the organization, now part of Ontario Health, to engage patients and their families more fully in the design, delivery and evaluation of care.

The challenge

Ontario Health (Cancer Care Ontario) is the primary cancer advisor to Ontario’s Government. Its mission is to equip health professionals, organizations and policymakers with the knowledge and tools they need to prevent cancer and deliver high-quality patient care. To do this, the organization collects and analyzes data about cancer services, and shares its findings with the health care community in the form of guidelines and standards.

In 2005, a report on cancer palliative services was published, highlighting an issue with symptom management. The challenge was to make patients feel they were active participants in their care and that their voices were being listened to. Christine Peters, Regional Oncology Person-Centered Care Lead, said: “We asked ourselves, ‘How do we shift the system to be responsive to that need, that experience and the symptom burden of patients?’”

An effective data solution would have to surmount a number of hurdles. It had to secure buy-in from clinical staff, because if they did not embrace it, patients would not engage. It had to comply with regulations on privacy and the type of data that could be collected. And it needed to be accessible to Ontario’s diverse population.

The solution

Ontario Health (Cancer Care Ontario) decided to trial a mechanism called Patient Reported Outcome Measures (PROMs), which provides a way to systematically screen patients and encourage conversations with their clinicians. The organization undertook a successful pilot study in the southeast region of Ontario, then rolled the program out to all 14 Regional Cancer Programs in the province.

Patients from the Regional Cancer Programs are asked to submit data about their symptoms before each encounter with the care team. They can do this through an onsite kiosk or tablet, or via their own personal device using a URL link. The data is shared with the patient’s care team for discussion during the visit, as well as being sent to a central analysis hub, the Activity Level Reporting (ALR). Standardized collection of PROMs data across the province allows Ontario Health (Cancer Care Ontario) to aggregate information and share it with each of the 14 Regional Cancer Programs. This allows hospitals to learn about their patients’ symptom burden and share insights with each other.

A range of enablers contributed to the successful implementation. Staff acceptance was fostered by sending clinical leads for PROMs out to individual sites to talk to frontline clinicians about any concerns they might have. Patients and their families were fully involved in the development process from the outset, which increased their trust in the new tool. Meanwhile, the data collection system to support the rollout of PROMs – the Interactive Symptom Assessment and Collection (ISAAC) platform – was built internally to meet stringent requirements on privacy and security.

The impact

The results have been extremely positive at an individual level. Joanne MacPhail, a cancer survivor and PFS representative, says that, one day, she flagged severe symptoms in the questionnaire. “I answered 9 across the board – the highest score you can give is a 10, which is the worst possible situation for you. Immediately, the doctor and the nurse flew to me and took me in. I felt really cared for.” Services are also better matched to patients’ needs. For example, recommendations have been developed that all head and neck cancer patients should have access to a dietitian and a speech language therapist.

At a strategic level, PROMs data has allowed Ontario Health (Cancer Care Ontario) to influence policy through evidence-based insights, leading to system-level improvements for clinicians and patients. Guidelines and clinical algorithms on symptom management have been developed, as have patient education and self-management resources. Furthermore, the data set has been made available for research, leading to dozens of academic publications on the use of PROMs for symptom management.

Such is the success of PROMs that other health care departments, such as hip and knee replacement surgery, have started to implement similar programs and are looking to Ontario Health (Cancer Care Ontario) for guidance and implementation support. The team has also identified opportunities for the use of data analytics in the wake of the pandemic. There are opportunities to use linked data sets to understand the impact of the crisis not only on COVID-19 patients but also in other areas such as mental health.