Rare Community Profiles

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Creating a Caregiver-Centric Social Platform: An Interview with Comend’s Albert Wang and Flawnson Tong

Albert Wang and Flawnson Tong have always been fascinated by technology and innovation; particularly how these elements could be applied to create actionable social change. After meeting in high school, the pair went their separate ways; Albert to McMaster University for biomedical engineering and Flawnson to the University of Waterloo, where he would drop out to pursue exciting work in drug discovery. Eventually, they reconnected as the youngest members of a Toronto startup accelerator program. Albert brought his experiences in healthcare; Flawnson in machine learning research and full-stack development.

While there are innumerable ways to channel their knowledge in many different industries, Albert and Flawnson aligned on a dire need to build in consumer health which Albert has long held an interest in. He shares:

“We were very passionate about the idea of addressing and reforming the problems we see in healthcare, especially in Canada, by creating solutions that can be directly used by communities. We began by exploring broadly, talking to everyone around us about how they learn and manage health. What we heard over and over was that the most serious pains are found not when we care for ourselves, but for our loved ones. Upon further digging, we identified family caregiving as a massively underserved and overlooked space. Something that caught my attention was the realization that throughout my experiences in biomedical innovation, the role of the caregiver did not come up even once. I really think it’s only a matter of time before there’s a collapse in Canada’s ability to support its caregivers.”

Further research reaffirmed the need for caregiver support, particularly in the rare disease world. Many rare diseases, particularly those with genetic orientations, are relatively new and under-researched. The communities are only blossoming and still fragmented. Pair this with the fact that many existing platforms are not made for health discussions (and that many people don’t trust existing platforms with their health information) and rare disease caregivers are often left feeling alone, isolated, and unsupported.

This led Albert and Flawnson to develop Comend: a social platform designed specifically for rare disease caregivers, or “raregivers.” Recently, the pair sat down with Patient Worthy to discuss the development of this platform, its unique features, and what they hope to bring to the rare disease community.

What is Comend?

Despite the important role of caregivers, many are often left without support or resources. This is especially true in rare disease, where a lack of medical understanding and information can stifle many families or caregivers searching for answers. Many rare disease caregivers go to platforms like Facebook to search for disease-specific groups where they can learn from others. Says Albert:

“Something we heard really early on was that crucial support caregivers are searching for is connection through shared experience. When we spoke with an author on caregiving, she shared that in her personal experiences, it was difficult to meet people going through similar situations. Specialized online bulletin boards allowed her to meet and maintain penpals globally, who cared for the same condition as her son and offered her a ‘lifeline.’ This ignited a spark for us because when I think about the potential power of the internet, there is this huge potential to reach across borders of all kinds.”

Flawnson and Albert wanted to focus on developing a dedicated platform to enhance this connection. Within the first month, they framed the problem by looking at the need and user demographic. Flawnson explains that speaking with caregivers like Donna was important because the pair doesn’t have firsthand caregiving experience:

“I was a secondhand caregiver for my grandmother, and both Albert and I expect to care for our parents one day. But in terms of rare disease, we wanted to understand and empathize with what they were going through. Rare disease caregivers have incredibly tough jobs and we want to honor that.”

After further development and evaluation, the pair launched their first prototype of Comend; while additional iterations will be done in the future, the initial iteration is visually similar to Facebook to help with familiarity. Additionally, Comend is working to develop an early network of patient advocacy group leaders, raregivers, and support groups. In the future, Flawnson and Albert are also interested in expanding the platform to include researchers and clinicians. 

Unique Features

The inspiration behind Comend is to help people find a community and to overcome issues on existing social platforms in relation to health conversations. Comend offers some unique features to enhance the experience for users. Says Flawnson:

“One observation we found was how unfriendly Facebook is to medical conversations. So one of the first and simplest things Comend offers is a safe, privacy-protected platform that allows caregivers to add and share their data. There’s a level of anonymity and fidelity over that, and caregivers can choose what they’re comfortable with. We hope that enabling this would encourage people to engage more and ask more questions to other caregivers.”

Another feature includes matching caregivers to others with similar backgrounds or cultures, disease states, or interests (such as legalities or financial questions). Flawnson explains:

“We found, and relate to this personally, that caregiving can be challenging because of its cultural connection. In many cultures, attitudes toward caregiving are different. For example, some cultures expect children to care for their parents when they age. Other aspects, such as finances or remote care, can also play a big role in the conversations. Matching and connecting people based on these elements is very important.”

Comend will also offer misinformation moderation and searchability. In terms of misinformation moderation, Comend uses tools to catch information that may be harmful or not evidence-backed. Albert shares:

“We don’t want to censor anybody. These tools are just designed to alleviate some of the burden and learning curves for fact-checking. This is especially imperative for raregivers who often end up educating even their professional providers. We want to ensure that people who are looking for care-related conversations can have them safely, accurately, and quickly.”

In terms of searchability, Flawnson says:

There is an age-old problem of not being able to search social networks for a specific question or concern. You end up trawling through years of posts without finding the holistic response to this question. Poor searchability makes people feel alone. At Comend, we want to pull the most helpful answers to the top immediately. If we can improve relevant information and lessen redundancy, people will realize that they aren’t alone. They’re not the only people interested in those questions.”

The Future of Comend

Albert and Flawnson have been working on Comend for four months now.  In the future, they hope to include machine learning tools to help concisely answer questions or even offer companionship via chatbots, so that information is offered in a context-aware and emotionally-aware way.

One thing that the pair is committed to is ensuring that Comend remains free for caregivers. Albert shares:

“We know that a rare disease can come with a large associated financial burden, as well as a huge time commitment. Patients and caregivers could have the opportunity, through Comend, to engage with research of all kinds. As a result, those developers — whose treatments, by the way, are much more likely to reach the market when informed by patients and caregivers—would help maintain Comend so that the platform would remain free for caregivers.”

As Comend continues to develop, Albert and Flawnson are interested in speaking with patients or caregivers who are willing to lend their experience. They have recently received their first milestone of funding and will be going through an accelerator program during April, where they will be focused on co-designing with the rare disease community. If you are interested in speaking with Comend or providing feedback on an early version, please email [email protected] and she is happy to facilitate that connection.