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Crohnology was a digital health platform designed to support individuals living with Crohn's disease (which I have) and Ulcerative Colitis, each chronic inflammatory bowel diseases. We grew to 15K patients (nearly 1% of the US population with the condition), purely through word-of-mouth and member-invites.
I designed, coded, and then raised funding and built a team to create Crohnology. I served as our product/engineering lead switch-hitting between coding, leading the team, and guiding product strategy.
Crohnology is a fusion of a social network and PHR (personal health record). It served as an online community and resource hub that empowered patients by providing a space for sharing experiences, insights, and information related to these conditions. Crohnology enabled users to track and manage their symptoms, medications, and overall health through interactive tools and personalized tracking features. The data contributed by members on Crohnology played a vital role in powering research and medical discoveries related to Crohn's disease. By voluntarily sharing their experiences, symptoms, treatments, and outcomes, members provided valuable real-world data that was analyzed and utilized by researchers to better understand the diseases. Researchers can leverage this information to identify trends, patterns, and factors that may influence disease progression or treatment response.
The initial idea for Crohnology came from my own personal experience with Crohn’s, coupled with meeting and swapping treatment stories with other patients. I organized a support group in San Francisco for other patients with the disease. It was clear to me that we, as patients, had a lot we could learn from each other, if we only had a health platform with rich enough tools to accurately and succinctly record our experiences. I set out to build those tools.
I seeded my prototype with the fifty-or-so support members of my support group. Using this early test group, I held in-person user testing and feedback sessions. I iterated on these learnings. I launched my prototype on Hacker News; it was #2 on the front page for a day.
An inspirational new user journey through Crohnology: a newly diagnosed patient can find others with Crohn’s or Colitis in his/her city, learn about the treatments are working for patients, and record his/her progress as he/she tries new treatments, ultimately to get better and help others.
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As the product grew, paying attention to product strategy was crucial. Some key insights came during this time: sticky usage was fueled strongly by our highly arbitrary 1-100 user self-assessed health meter. It drove engagement because it could tell somebody’s health story in a snapshot, and we could inform friends of that user that their friend’s health has improved or fell, driving more engagement.
But what drove long term value was the deeper information we gathered from patients, such as the user’s health history, current medications and symptom status, and answers to questions asked by other users. For most our users, it is too much information to give in a single user session. So we needed ways to break down that information gathering across multiple sessions, across small points of engagement that might have simply come because the user was emailed they received a message from a user on the site.
At the same time, we had pharmaceutical companies and research organizations reaching out to us to either recruit for clinical trials, or to have our patients fill out their market or clinical research surveys. We seized these opportunities in the simplest way at first (advertising these opportunity to our users over email). However, I soon saw the opportunity to make these offerings native into the app itself: something that provided value directly in the product.
Inspired by the revenue source we found in helping organizations get their surveys answered, I designed a “question card” interface. Almost like Tinder in its simplicity, users would be presented a question. After selecting or writing an answer, they were presented with another. A score let them know how much info they contributed. The questions came from a variety of sources around the site. “How’s your health today” could be followed by “Have you ever taken X medication?”. If that answer was a “yes”, we might follow up with asking for how long they took the medication and how it worked for them. We next might interject a question from a research survey. We build a model behind this for each user which predicted the most value-add questions we could ask at any given point.
The result of this, is that we now had a powerfully working engine for feeding in any data request from users, including arbitrary surveys, which worked in a bite-sized fashion in short user sessions on web or mobile. It doubled the average number of data points we had collected for each active user. It also drove up our active user percentage. It simplified business development because we knew we could get the data asked by any research deal, and in fact, many times already had many of their questions answered. It also simplified new feature development, because we had a tool to bootstrap data into any new feature we built. We didn’t have to figure out “Okay now how are we going to get users to provide that data?”.
As Crohnology grew, I was fortunate to forge a partnership with the CCFA and the University of North Carolina. Together, we received a grant to put the power of Crohnology towards full-fledged clinical research with a national community of medical researchers. We built out tools for patients to directly collaborate on designing research and contributing to it. We built out a researcher application for researchers to interface with opt-in contributed data.
In contrast to a traditional research study, via IBDPartners, patients are co-producers of research, with involvement in governance, research prioritization, study conduct and results dissemination. Our co-production model includes patient members of a Patient Governance Committee who serve on key committees and co-investigators on research projects. The patient portal helps to recruit new members and engage existing members. Through the portal, members can contribute health data through surveys, check-ins, mHealth data linkages. They can view integrated data to gain disease insights. By suggesting and voting on research ideas, portal members can help prioritize a patient-centered research agenda. We recently disseminated to researchers a patient-prioritized research agenda developed through an analysis of the proposed research questions to encourage research on topics of highest interest to patients.
I don’t have releasable screenshots due to patient confidentiality, but I have some of our pre-product design mock ups: