Alberta Cancer Foundation

Deciphering Data

By: Cailynn Klingbeil

In Alberta, plentiful and varied information is collected on cancer care. There’s the Alberta Cancer Registry, for example, in which every single case of cancer diagnosed in the province is documented. Another massive dataset encompasses the experiences and outcomes of cancer patients themselves, an important perspective that has not historically been gathered. Meanwhile, information on areas such as diagnoses, treatments and health system usage is held in administrative databases 

Data is an untapped resource and, if used responsibly, can yield big insights into how we might be able to tailor treatment and care more appropriately, says Dr. Paula Robson, scientific director for both cancer research and analytics at Cancer Care Alberta and the Cancer Strategic Clinical Network. “When you really get into it,” she says, “it’s a treasure trove.”

In Alberta, researchers and analysts are harnessing vast provincial databases to improve outcomes and experiences for people facing cancer. That work is poised for growth as teams integrate data in new ways to answer complex questions. Privacy remains of utmost importance — personal, identifiable information isn’t shared, but researchers can still tell an incredible story.

The COVID-19 pandemic has brought health data mainstream, with people across the province closely watching systems that track coronavirus cases, deaths and vaccination rates. Across the cancer continuum in Alberta, expansive health data is collected. Organizing and navigating all that data, as well as extracting valuable insights from it and supporting academic partners, falls to the teams within the cancer research and analytics portfolio at Cancer Care Alberta, an investigative hub created in 2018.

“My teams are experts in being able to put all of that information together and provide a picture of what’s happening in terms of cancer care, cancer treatment, cancer outcomes in the province of Alberta,” says Robson. “And then, with a better understanding of what’s going on, we can figure out whether there are better ways of doing things.”

Cancer Care Alberta is embedded within Alberta Health Services (AHS). In other provinces, data may be spread across different hospitals, organizations and cancer treatment centres.

“We have such a great advantage in that we can pull it all together in one place for access,” says Robson, who is also board chair of the Canadian Cancer Research Alliance.

The data collection happens through many channels. Health-care providers recording routine information at clinic visits, for example, may not realize that just by doing their job, they’re contributing to the massive information mine, Robson says.

But data collection is just one piece of the puzzle. Data must also be sorted and standardized before it can be analyzed by people who have both clinical and statistical knowledge.

Health data can be used to help understand why some patients respond well to a particular treatment, for example, while others do not. Such findings could lead to tailoring cancer treatments to more appropriately meet the needs of individual patients. The “holy grail,” says Robson, is precision oncology: “the right treatment to the right patient at the right time.”

Putting Patients First

Within the cancer research and analytics portfolio, one team is focused on documenting the experience and outcomes of cancer patients. “It has not been something historically gathered in routine care,” says Dr. Linda Watson, the scientific director for applied research and patient experience with the AHS cancer program. “Now we are gathering this whole large dataset that represents patients’ experiences and outcomes, and then that can be combined with other pieces of data to answer questions in new ways.”

When cancer patients are seen at a Cancer Care Alberta site, they complete a patient-reported outcomes questionnaire called Putting Patients First. This standardized tool asks patients to rate a variety of common symptoms, from pain to lack of appetite to anxiety, and also includes a problem checklist covering concerns in categories including emotional, practical, physical and nutrition.

The primary purpose of the resulting data is to guide patient care. In the future, Watson points out, patients will be able to complete the questionnaire electronically prior to appointments, and health-care providers will be able to access data-visualization dashboards in real time, ultimately ensuring patients receive the right care.

The information also flows into a comprehensive dataset of patient-reported outcomes, used to inform broader improvements. So far, that data covers about 80,000 patients and 450,000 different screening points with symptom data, says Watson. It’s already being used to answer real-world questions.

Watson shares a recent example, in which patient experience information was examined alongside other records, including hospitalization and emergency room data. Researchers found that patient symptoms were a predictor for future hospitalization and emergency room use.

Acting on such findings could lead to improvements for patients, as well as the health-care system, Watson says. By increasing care earlier to help manage symptoms, patients could stay in their homes and avoid expensive emergency room visits and hospitalization.

Cancer Data Sciences Hub

Such findings are aided by the ability to integrate data — an area poised for growth in Alberta.

“As we move forward, this is the power,” says Watson. “We’ve got pharmacy data coming in, so we know what treatments people were on. We’ve got hospitalization data, emergency room data, symptom burden data, treatment modalities, CT scan diagnostics, all these things that we can now pull together to answer these more complex questions.”

Her team’s work documenting the experience and outcomes of cancer patients feeds into two major initiatives transforming cancer research and care in Alberta: Oncology Outcomes for Real World Patients and the Cancer Data Sciences Hub. It’s a great example of partnership, as the health system and academics work collaboratively to answer questions important to improve cancer care, outcomes and experiences.

Oncology Outcomes for Real World Patients, known as O2, is a research program that uses advanced analytical methods on health data to bridge the gap between the controlled setting of clinical trials and the real world.

“When a cancer drug is approved for use, it’s generally approved on the basis of how it performed in clinical trials,” Robson explains. A challenge exists in that the people selected for clinical trials may be quite different from the cancer patients who go on to receive the drug. The latter group, Robson says, may have underlying conditions that impact how the drug works, or maybe they don’t take the drug as consistently as trial participants because of how it makes them feel.

“We can start pulling all of that data together to say, when we look at how this functions, really, what’s the story? Is the drug as effective as we thought it was when it came out of the clinical trials?” Robson says.

The Cancer Data Sciences Hub, still in the concept phase, is a collaboration between Alberta Health Services and cancer scientists at the University of Calgary. It would create a hub for all the data, so researchers can better handle, integrate and analyze it, connecting dots in ways they haven’t previously been able to.

Linking the University of Calgary’s molecular data work — which reveals the genetic profiles of tumours, for example — with Alberta Health Services’ robust clinical data and patient-reported outcomes, could help researchers understand how to better treat cancers based on their genetic makeup, Robson says.

Similar work is being done in Edmonton as physicians at the Cross Cancer Institute are combining clinical expertise with data to improve care for their patients. For instance, Dr. John Walker, a medical oncologist with the Cross, collects data on the immunobiology of cancer and toxicities associated with immunotherapy. This database will help oncologists understand the role of the immune system in cancer and understand how immunotherapy is changing cancer treatment.

Also at the Cross, Dr. Naveen Basappa is working with a national registry that collects patient data from consented patients who have been diagnosed and treated for renal cell carcinoma. That data is then used to refine and improve the treatment and management of kidney cancer across Canada.

Dr. Jennifer Chan, director of the Arnie Charbonneau Cancer Institute at the University of Calgary, says there isn’t currently a single superstructure that incorporates both the vast clinical data assets of AHS and the deep experimental- and discovery-oriented data from University of Calgary-based researchers. The Cancer Data Sciences Hub could be leveraged by investigators across different domains of cancer research to accelerate progress, gain more insights and make a greater impact for a larger number of patients.

The conclusions from such a system, however, are only as good as the available data feeding the system. “There have been pockets of different areas of society that traditionally aren’t as well represented in research,” Chan says. “So, if we’re going to make this work, we really need as many people from as many diverse backgrounds as possible.”

Through her work, Chan sees firsthand how individual actions — like cancer patients consenting to tumour banking, or people signing on to research projects such as Alberta’s Tomorrow Project (see page 21) — help to build a health-care system that provides the best care for all Albertans.

Chan gets excited talking about the opportunities the Cancer Data Sciences Hub can bring, from accelerating precision oncology to creating more room for researchers to use artificial intelligence and machine learning to sift through vast datasets.

Ultimately, she says, all this work will improve how health-care providers treat cancer patients. “Right now, there’s just too much information for one human, one oncologist, to integrate everything at the same time,” Chan says.

The hub will enable a different future for people facing a cancer diagnosis. Health data from people similar to the patient, and information previously extracted from that specific type of tumour, will be accessible to healthcare providers in real time, informing a tailored treatment plan that’s truly best for the patient.