Tahir Janmohamed\u2019s mother lives with fibromyalgia, a chronic condition that causes pain throughout the body. Janmohamed grew up watching her describe her experiences to health care providers and to family. And he watched how she wasn\u2019t believed.<\/p>\n
Janmohamed doesn\u2019t have a background in health. He\u2019s a Torontonian software engineer who got his MBA and worked in management consulting. His work at IBM brought him to the intersections of business, tech and data.<\/p>\n
\u00a0Seeing how data could be leveraged was exciting\u00a0\u2014 but he was disappointed seeing it not be impactful at the person level. \u201cI needed to use my skill set in a way that I felt could make a difference.\u201d<\/p>\n
\u00a0\u201cI thought that if I could bring data to people like my mom and her clinical team, maybe people like her can (be) believed a little bit more,\u201d he says.<\/p>\n
\u00a0Janmohamed also thought about health-care providers who could use the data: \u201cNow they\u2019d have some data to run with because there\u2019s no blood test for pain, there\u2019s no X-rays for pain.\u201d\u00a0<\/p>\n
This impulse led him to developing the app ManageMyPain. A few years in, the app had 18,000 registered users, and he happened to meet Dr. Hance Clarke and Dr. Joel Katz, both team members at the Transitional Pain Service, a multidisciplinary pain program, located in University Health Network\u2019s (UHN) Toronto General Hospital.<\/p>\n
\u201cI told them, I have all this data,\u201d says Janmohamed. \u201cWe\u2019ve clearly found a way to engage people with chronic pain.\u201d<\/p>\n
Fast forward to today and ManagingLife, the company Janmohamed founded, now counts Clarke as its medical director and Katz as its research director. The app has grown, with over 125,000 users in Europe, the United States and Canada, and it\u2019s been a source of data for UHN researchers.<\/p>\n
Still, are apps like this one an important part of the future of chronic pain care? Those living with chronic pain see potential, but some experts express concerns about the data these apps generate. These experts worry about data privacy and the implementation and usefulness in a Canadian health-care system already under strain.<\/p>\n
Tech trends<\/p>\n
Like Janmohamed, Michelle Charette grew up watching her mother navigate chronic pain. This is part of what led her to pursuing a PhD focused on the issue, which brought her to speaking with a number of people living with chronic pain. Through that work, she observed a change in the way technology interfaced with pain.<\/p>\n
\u201cI started to kind of notice that there were these trends towards more apps, more digital forms of tracking and management, games for pain management.\u201d<\/p>\n
Charette is a chronic pain researcher who now works at York University\u2019s Connected Minds: Neural & Machine Systems for a Healthy, Just Society initiative. She worries about the \u201cdatafication\u201d of pain.<\/p>\n
\u201cYou have this complex human thing,\u201d says Charette, \u201cand we can talk about that in so many different ways.\u201d However, transforming a human experience through technology into something neat like numbers\u00a0\u2014 datafication, she says\u00a0\u2014 can obscure more than it reveals.<\/p>\n
Technology like mobile apps have emerged as a tool for people living with chronic pain to track their symptoms, usually by self-reporting. ManageMyPain may be an outlier because it\u2019s an app coming out of a partnership between a tech company and a research hospital.<\/p>\n
With names such as Bearable, Flaredown, Curable and Releaf, many mobile apps seem to propose a future where the disease is more manageable.<\/p>\n
But apps don\u2019t always produce coherent information beneficial for people living with chronic pain, says Charette, based on her research with people who use these apps.<\/p>\n
\u201cWe looked at the charts together,\u201d says Charette, \u201ca number of them said \u2018I don\u2019t know how to read this. I don\u2019t know what to take away from this.\u2019 \u201d Charette says this is because the apps were likely designed by doctors for doctors.<\/p>\n
<\/p>\n
Maia Ross is a 22-year-old student at McGill University who has lived with chronic pain since she was five, and has experienced periods of being bedbound.<\/p>\n
Vindolanda Field School photo<\/p>\n
Treatment with data<\/p>\n
Maia Ross is a 22-year-old student at McGill University who has lived with chronic pain since she was five, and has experienced periods of being bedbound.<\/p>\n
She was diagnosed with a hypermobility spectrum disorder at the age of 21, by a team housed in a pain clinic at UHN.<\/p>\n
The clinic introduced her to ManageMyPain. The app is free, lets her log pain and medications, and makes it easy for her clinical team to stay updated.<\/p>\n
\u201cIt just syncs from my phone directly to my chart at the hospital,\u201d she says. The clinical team can easily analyze the patterns during appointments, and make adjustments to treatment based on her data.\u00a0<\/p>\n
Before ManageMyPain, Ross paid $180 for an app called CareClinic. However, she was frustrated: \u201cI didn\u2019t feel like I was getting enough out of it,\u201d she says. \u201cI was getting data out of it, but I was not getting patterns.\u201d<\/p>\n
Being online<\/p>\n
\u201cWhen you\u2019re in pain all the time, it becomes synonymous with living. It becomes your reality,\u201d says 22 year-old Aditi S., a chronic illness advocate based in Washington state.<\/p>\n
Under the Instagram handle aditisroom, Aditi educates people about living with several conditions including severe Myalgic encephalomyelitis\/chronic fatigue syndrome, hypermobile Ehlers Danlos syndrome, and chronic migraines.<\/p>\n
Our interview was conducted using voice notes, which meant Aditi participated at a pace accommodating the chronic illnesses\u2019 severity. Like many people living with chronic health conditions, Aditi finds technology is a necessary conduit for connection and information.<\/p>\n
Aditi uses the app Visible and its accompanying arm band, which is a wearable heart-monitor (the band is not available in Canada). \u201cIt helped bring my attention to how often I was experiencing symptoms,\u201d Aditi says. \u201cIt helped bring attention to how severe my condition was.\u201d<\/p>\n
In fact, the app\u2019s tracking of symptoms led Aditi to be diagnosed with another chronic condition, one they say they wouldn\u2019t have known about otherwise.<\/p>\n
\u00a0While there are benefits of apps like Visible and ManageMyPain, they are not a cure-all. Chronic pain is a big issue: Almost eight million people in Canada live with chronic pain.<\/p>\n
<\/p>\n
Devices like glucose monitors, which diabetics can use with apps to stay on top their condition, are a forerunner of the future of chronic pain apps.<\/p>\n
Dreamstime photo<\/p>\n
Despite the big numbers, there are significant challenges in accessing publicly funded pain care across the country. \u201cWith one in four people who live with chronic pain in Canada, it still remains relatively underfunded compared to other areas,\u201d says Dr. Daniel Buchman, a bioethicist and scientist at the Centre for Addiction and Mental Health (CAMH).<\/p>\n
\u201cThe most frequent interaction or first interaction actually people will have about their pain is with a family physician and\/or in primary care,\u201d Buchman says. Yet, beyond the problem of millions of people currently being without a primary health-care provider, health-care providers do not receive adequate training on chronic pain, he says.<\/p>\n
Treatments shown to be effective for chronic pain, such as massage or acupuncture, are not covered by OHIP. \u201cUnless you have a job with health benefits,\u201d says Buchman, \u201cyou know you\u2019re paying out of pocket.\u201d<\/p>\n
What\u2019s more, pain app users may not always be aware of consenting to data ownership and privacy practices, given lengthy or jargon-filled terms and conditions.<\/p>\n
For Buchman, privacy and confidentiality are ethical concerns. Without government oversight or regulation, \u201cwho owns your data?\u201d asks Buchman, \u201cHow is this connected to other forms of data on your phone \u2026 that you may or may not be aware of?\u201d<\/p>\n
Not all people who are living with chronic pain have concerns about privacy. \u201cI can tell you that not a single person was concerned about privacy,\u201d says Charette, of the research she conducted. \u201cIt\u2019s a bit of a luxury to worry about that when you\u2019re in excruciating pain and you need relief.\u201d<\/p>\n
Aditi sees this as a concern, given the vulnerability people may experience: \u201cWhen people are in pain, they\u2019re easier to influence.\u201d<\/p>\n
The digital divide means there are people without access to mobile apps. In a 2024 commentary<\/a>, The Dais, a think tank at Toronto Metropolitan University, described the digital divide as not just those who don\u2019t have access to the internet, but also the cost of devices and the gaps in digital skills including amongst seniors, children and newcomers.<\/p>\n