Shaneel Pathak used to carry a binder brimming with documents, test results, prescription information and other critical data from appointment to appointment with a multitude of health care providers as he and his wife, Heing Taing, navigated their way through her cancer diagnosis.
She suffered shoulder pain for a year before a private MRI in 2013 revealed stage-four lung cancer.
“Many people know that the system is fragmented. You have to repeat your story; it’s difficult to navigate,” says Mr. Pathak, co-founder and chief executive officer of HAnalytics Solutions Inc., developer of the software-as-a-service (SaaS) platform Zamplo. The Calgary-based company equips people with information and resources to mobilize their own health data.
“The biggest challenge we had was, there was no place to put your whole health data, no tools to really analyze it,” he says. “And a lot of people, like us, were carrying around this paper binder. Finding community was very difficult.”
It was during this time that Mr. Pathak realized the need for patients to take back control of their own health care journeys by controlling their personal medical information.
“That was the genesis of Zamplo; lived experience and seeing how the power of data and community could help and influence your outcomes when it comes to a chronic disease or mental health,” says Mr. Pathak, a computer engineer with a master’s degree in political economy who worked as an IT management consultant.
He and his friend, Cory Kapser, a software developer, met and in 2015 began talking about a solution. For the first few years, it was the two of them and a used $400 server in Mr. Kapser’s basement working evenings and weekends.
“It was very much a grassroots effort,” Mr. Pathak says.
The collective power of patient experience
At the outset, his wife was given months to live but she defied the odds. She lived four more years and was very pro-active in her treatment, connecting with other patients with similar diagnoses all over the world.
At one point, when the cancer progressed to her spine and brain, she was approved for a new cancer drug but there was no published data on its efficacy, Mr. Pathak recalls.
She had to decide between the drug or whole-brain radiation.
“I went to the community and asked them, can you give me your data?” he says.
Seventy-six people responded. He analyzed the drug data and found that most of them had a positive response.
“We took this information to our oncologist and he agreed to postpone whole-brain radiation,” he says.
His wife received the drug, and an MRI confirmed within a month that she was responding well.
“Within two months, we were in Bali,” he says.
When Ms. Taing died in November, 2017, Mr. Pathak sold their house and invested the proceeds in Zamplo, originally called ZoeInsights.
With additional funding from the Alberta Cancer Foundation and the National Research Council of Canada’s Industrial Research Assistance Program, Zamplo officially launched in June, 2020.
The platform, available as a basic free app or as a premium service with myriad tools, allows patients to collect their own health information.
‘Shifting power to the individual’
Powered by Amazon Web Services, including its Textract feature, patients can scan photos, log questions and observations, even download data from wearable tech.
“That paper binder is replaced with a virtual binder,” Mr. Pathak says. “That’s how we are shifting the power to the individual.”
It provides artificial intelligence (AI) tools that enable patients to securely track and analyze their information, sharing it with caregivers if they choose.
A new feature added in July acts as a “LinkedIn for patients,” he says, tapping AI to connect patients to others around the world if they choose.
Although Zamplo is for patients first and foremost, the technology is attracting the attention of the research community for its potential to recruit a much broader cohort for clinical trials and remote, real-time data tracking.
There are currently three clinical research projects using the platform and potentially five more in the works. Zamplo has about 1,000 users so far and the company has partnered with 14 organizations in Canada, the United States and Europe.
The platform will be used by patients taking part in a study of palliative oncology patients recently awarded the Princess Margaret Cancer Foundation Grand Challenges Award for Digital Intelligence, and is one of two companies in the world chosen by the Institute of Electronic Electrical Engineers to pilot new global mobile health data standards.
Mike Urquhart, Zamplo’s chief operating officer and chief financial officer, says his own family’s experience in the health care system drew him to Zamplo.
His wife, Lorraine, was twice diagnosed with rare forms of cancer and ultimately died of NUT carcinoma. His oldest son was later diagnosed with severe obsessive-compulsive disorder.
A mutual friend introduced him to Mr. Pathak and in 2014, Mr. Urquhart became the company’s first angel investor.
Using AI to advance health care research
Breaking down the silos in health information and putting it all in one secure place opens a lot of opportunities to tap AI for health care research, Mr. Urquhart says.
All over the world, he says researchers are beginning to use the vast and, for the most part so far untapped, stores of health data to drive innovation and unlock the mysteries of rare diseases, public-health issues and chronic disease.
Zamplo was designed with millions of global users in mind, which could provide invaluable quantities and diversity of data that can be very difficult for researchers to find on their own, Mr. Urquhart adds. There are already users in Canada, the U.S., Australia, Europe and South America.
Amazon Web Services recently launched its HealthLake service, for example, a secure, privacy-compliant, scalable repository for raw health data.
Localized health data can be limited and inconsistent. Amazon HealthLake gives health care providers and researchers access to a repository where they can store, source, query and analyze data using natural language processing. Essentially, it can gather health data from all over the world and make it usable.
“Imagine that information and what potentially could come from that if we honour people’s privacy but with the ability to research based on that information; if we get data scientists looking at that from a machine learning perspective,” he says. “That’s kind of our dream.”
How AI can help drive medical breakthroughs
About 10 per cent of the population suffers from some type of rare disease. The rarity makes it difficult for doctors and researchers to come up with a treatment, as there are so few patients and very little data.
“There can sometimes be no research or information on the disease,” says Aneal Khan, medical geneticist and director of the Metabolics and Genetics in Calgary (MAGIC) clinic at the Alberta Children’s Hospital Research Institute at the University of Calgary, and a child health and wellness researcher in the precision medicine and disease mechanisms program.
“If a patient is looking for a treatment or remedy is really no information on what might have worked in the past for other people, or what might have not worked, what kind of symptoms they’re having.”
Dr. Khan has teamed with Zamplo in a new study called G.R.I.T (Getting global Rare disease Insights through Technology, funded by Alberta Innovates.
It is the first app-based clinical trial in Canada for patients with metabolic disorders, specifically Fabry disease, a rare condition that causes chronic pain.
“This app is an attempt to try to get real-world experience on what patients are actually doing,” says Dr. Khan, who is also an adjunct professor at the University of Calgary’s Cumming School of Medicine.
“Somebody could be using massage therapy, somebody could be using yoga, somebody could be using Tylenol No. 3s, and we want to get real-world data on what they’re using to treat their pain.”
Research often relies on data from pharmaceutical companies’ clinical trials, but if there is no clinical trial, there is no good means of collecting that information, he says.
Patients who enroll in the clinical study will be asked to track their symptoms and medications, as well as non-pharmaceutical treatments. They will also be able to download information from personal health trackers, such as heart rate or exercise. Some will act as a control group, reporting to the doctors as per usual.
“We hope to be able to see this patient was taking more pain medications. Did it actually help relieve the pain?”
This type of detailed tracking has been a breakthrough in diseases such as childhood leukemia, which has gone from an 80-per-cent mortality rate to an 80-per-cent survival rate in part because of this kind of data, he says.
“Trying to track this real-world evidence is something that’s emerging as a way to help patients cope with their conditions, rather than waiting for clinical trials,” Dr. Khan says
A tool such as Zamplo, used globally, also has the potential to provide access to a much more statistically significant sample for research, he says.
The founders of Zamplo certainly envision using AI to analyze and connect anonymized health data on a large scale, leading to medical breakthroughs and invaluable public-health insights.
Fabry disease, for example, affects about 450 people in Canada. That may not be enough for a proper statistical comparison, Dr. Khan says.
“But there are, we would estimate, more than 6,000 cases in the world. Now you increase your patient base by including all patients with Fabry disease around the world.”
That has the statistical heft to lead to breakthroughs, he says.