need help managing a disease? there's an app for that
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shaneel pathak (above), along with friend and software developer cory kapser, created zamplo to connect patient information with caregivers and health-care teams. supplied
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when shaneel pathak was caring for his late wife, heing taing, who was diagnosed with stage 4 lung cancer in 2013, he routinely toted a binder stuffed with all her data — notebooks, test results, medications, cds of diagnostic images, names of doctors and specialists — from one appointment to another. with each new visit, he and taing recounted her condition, test results and responses to treatment over and over. plus, while researching her cancer, he was never sure if the information and resources he found on the internet were credible. he kept thinking there had to be a better way.
app helps share information about home care with doctors
“often when you have a critical illness, doctors want to know what your experience is at home,” says pathak, who lives in calgary. “it’s about the flow of data and your lived experience in presenting that. so [i thought], how do we capture what is happening at home, what is happening mentally and physically, and then how do we express it in an organized fashion to our care team?”
using his background as a computer engineer, in 2015 he collaborated with cory kapser, a friend and software developer, to design and create a secure, centralized platform to record, store and analyze all of taing’s relevant information and provide access not only for the two of them, but for their health-care team as well. the goal was then to make the platform available to others with diseases and illnesses to also use.
during the five years that it took to get the platform, initially called zoeinsights and now zamplo, up and running, taing provided input based on her own experiences managing her cancer. she also used aspects of the design to be actively involved in her treatment.
“heing provided the requirements for the first version of the application, which led to the design of a digital version of her notebook,” says pathak, zamplo’s ceo and co-founder, along with kapser, now chief technology officer.
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the more informed she became, the more she could advocate for herself.
“for example, she would record her symptoms and rank them in intensity, pain medication dosage and timing of her targeted cancer drugs,” says pathak. “using this information, she could find patterns and correlations over time. the process was manual and, with limited energy, a lot of work.
“i took her methodology and ‘digitized it’ using graphs or a summary report. she would present the consolidated view to her oncologist. we then iterated the design to make it simpler for her and her oncologist to have an effective dialogue. my goal was for her to spend less time on her history and more on an action plan,” says pathak of taing, who was initially given months to live, but survived for four years past her diagnosis.
the more informed you are, the more you can advocate for yourself
as a result, the app, designed from the patient’s perspective and fully customizable for any illness, disease or condition — physical, mental or both — features a journal to record symptoms, medications and supplements, graphs for data, a digital binder to store photos of side effects, and a secure place to store and retrieve health records from anywhere in the world.
zamplo includes a journal to record symptoms, medications and supplements and can be customized to any disease. supplied
in 2020, pathak partnered with the alberta cancer foundation, which funded the first release of the platform, to bring it to the greater population. the basic plan is free, while a premium version costs $49.99 a year.
examples of where the zamplo platform is currently in use, says pathak, include a mental health study by the radical mental health doula program at the university of calgary; as wearable and patient-centred digital devices for health monitoring by respiratory disease patients at the university of alberta; by the farncombe family digestive health research institute at mcmaster university studying inflammatory bowel disease; and for electronic patient reporting of symptoms during outpatient radiotherapy treatment at toronto’s university health network.
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others use it to track and manage diseases and conditions such as joint pain, multiple sclerosis, mitochondrial disease and various cancers.
zamplo for metastatic breast cancer
in 2021, pathak collaborated with dr. nancy nixon, oncologist and researcher at calgary’s tom baker cancer centre and assistant professor at the university of calgary, who configured the platform to use for metastatic breast cancer patients using patient advisors to create the relevant features. these patients are able to securely track and analyze their health information, share it with their caregivers, upload photos and files from their phone to the app, record a list questions to take to appointments, connect with others around the world, search for clinical trials, even download data from their wearable tech.
“we tried to design it to be fairly simple and user friendly,” says nixon, who officially launched the platform on may 4 for use with her metastatic breast cancer (mbc) patients. “there is an opportunity to create more and more features but we really wanted to keep it small at first to make it user friendly. as we get more feedback and learn more about what functionalities people are finding most valuable, we can tailor it to the patient experience.”
it’s is currently in use in alberta, but the goal is to distribute it across canada.
“we tried to make it as transferable as possible so there isn’t a lot of institution-specific information or province-specific information,” she says.
shaneel pathak collaborated with dr. nancy nixon (above), oncologist and researcher at calgary’s tom baker cancer centre, who configured the platform for metastatic breast cancer patients. supplied
the project was co-sponsored with a collection of pharmaceutical companies, adds nixon, called the breast cancer industry group (bcig), whose research focus is on breast cancer. pathak adds that the platform is approved by the health research ethics board of alberta, and no data is shared with the bcig members. he says the bcig funded the mbc project and selected zamplo as the technology partner.
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nixon’s aim is for the platform to be of use specifically to mbc patients.
“as part of my fellowship training, i did a project where i worked with mbc patients to understand their unique needs,” she says. “breast cancer is a very common illness and there’s a lot of information out there for patients with breast cancer. i found from working with patients that oftentimes they feel a bit left out from the volume and amount of resources that patients with early breast cancer receive. many patients with mbc live for many years with their diagnosis, so trying to fill that gap of feeling like there aren’t specific resources for them was part of the reason that this project came about.”
pathak says that his team’s technology has “flipped the model of how digital health is being used.”
“in the old model, often an institution would build an application, distribute it, and then have the responsibility to improve it over time, which gets costly,” he says. “with zamplo, because it is one application that, no matter what health condition you have, they all use the same backend platform, and share in the cost of maintaining it, makes it much more sustainable. it’s truly person-centred and empowering, where you are the hero in your health journey, no matter your condition or phase of life.”
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