Shaneel Pathak vividly remembers the information overload that accompanied his wife’s lung cancer diagnosis in 2013. There were medications to remember, appointments to make, questions to ask physicians, and symptoms to track and analyze.
Pathak and his wife, Heing Taing, tried their best to organize it all as efficiently as they could. They jotted down observations in paper notebooks and wrote down notes in the patient journal provided by the Alberta Cancer Foundation, available at Alberta’s cancer centres. They typed up reminders in Taing’s phone, graphed her health data in Excel and kept photos in an electronic album. But that important data was scattered, and it was difficult to provide the best information to their health-care team.
“I found that data was so important to us to advocate for Heing’s health and treatment, but the problem I found was that we were using a diverse set of tools,” says Pathak. “It was never streamlined. It was all fragmented.”
During Taing’s five-year cancer journey, Pathak was inspired by the journaling she did and saw how the data she collected helped her self-advocate. He began looking for a digital solution for data compilation and found a few options, but they weren’t exactly the right fit. Sure, they could have helped, but they left something to be desired. Also, he could only find American companies and had concerns about not knowing where the data was stored. As a caregiver who experienced the difficulties of information overload first-hand, and with a background in computer engineering, Pathak realized he could leverage technology to improve this experience.
“As the patient or caregiver, you are the hub of information for service providers. The more accurate information you can provide, the better they can serve you,” says Pathak.
Pathak founded his software service company HAnalytics Solutions in 2015 with a focus on creating tools for patients for health-care management.
Sadly, Taing passed away in 2017. Fuelled by his wife’s tenacity and driven to help other cancer patients use journaling and data to improve their quality of life, Pathak and his business partner, Cory Kapser, devoted the business to developing a digital patient journal.
The digital journal is currently in the testing phase and Pathak describes it as a secure software service that can be used anywhere there’s an internet connection, and is accessible via smart phone, tablet or desktop. It’s an elevated and streamlined journaling experience.
Pathak explains the digital patient journal as being an easy-to-use solution for patients and caregivers to efficiently log all information related to their cancer experience, whether that’s questions, observations, photos or consultation notes. It can keep track of appointments, medications, supplements and dosages in a streamlined way. And the analytics tool allows users to graph any symptom, track any medication or measure any personal data such as weight changes, steps taken, or blood pressure. This all helps patients and caregivers find patterns and better understand their cancer experience. Pathak adds that the digital journal also condenses all the information into a report, making it easy for patients’ health-care teams to review at appointments.
“The digital patient journal focuses on patient-derived information. It’s so the patient can tell their health story more effectively,” says Pathak. Around the same time that Pathak and Kapser began working on HAnalytics Solutions’ digital patient journal, the Alberta Cancer Foundation was working to address a similar problem.
According to James Yip, senior investment development officer at the Foundation, the team there had developed a patient health journal in 2010 to help patients track their cancer journeys. But the 200-page, spiral-bound book had its limitations and the Foundation looked into digitizing its own branded patient journal.
“These journals are available through all of the cancer centres in Alberta but distributing them can be a challenge. It’s not easy to supply them to rural areas and not all the patients know about these journals, so it’s very difficult to market them,” says Yip.
When the Alberta Cancer Foundation heard what Pathak and Kapser were working on, it saw a partnership opportunity. And, in 2018, they began talking. Instead of addressing the same problem in isolation, Yip says the Foundation saw value in tackling the problem together.
“Having information written in a printed journal is one thing. But to be able to put all your cancer journey information into one digital tool and apply the analytics capabilities, that just takes it to the next level,” says Yip.
For the Alberta Cancer Foundation, this partnership is appealing because HAnalytics Solutions offers more than the technical know-how. HAnalytics’ digital patient journal was designed knowing what its future users will need.
“Working with a web developer with such a passion for making life better for Albertans facing cancer has been great. Shaneel Pathak is in our ecosystem and also has the expertise to pull this off,” explains Yip.
That’s a point Pathak makes, too: HAnalytics’ digital patient journal is based on his experience as a caregiver and Taing’s experience as a cancer patient.
“As my wife’s caregiver, I’d think about how a digital solution helps me in my specific situation,” recalls Pathak.
The Alberta Cancer Foundation and HAnalytics Solutions began working together in December 2018. According to Yip, details of this partnership are still in the works, but HAnalytics and the Foundation plan to launch the digital patient journal in the next few months. Then the Foundation plans to make the digital tool available to Albertans in addition to its print patient journal.
For the Alberta Cancer Foundation, this partnership offers a high-tech solution to ease the cancer journey. For HAnalytics Solutions, it provides essential funding, which helps with additional development costs, and the Foundation’s belief in the project lends credibility to its value.
But at its core, this partnership will benefit Albertans living with cancer and their caregivers, empowering them to make the best personal choices as they navigate the information-heavy health-care realm.
