By Emily Craven
By the time I was 25, I’d already been sick with Myalgic
Encephalomyelitis (M.E.) for four years, had seen nearly two dozen
doctors, had to quit my dream job, and moved back in with my parents.
One day, on a rare coffee shop excursion, an old friend asked me,
“What do you do about an illness with no recognized treatment?”
It was a good question. I explained that I’d been combing patient
forums and online message boards. I was slogging through endless
posts, weighing anecdotes about treatments relieving or inflaming
symptoms, despite having no way to know if the person posting and I
reacted similarly to such treatments. “I spend a lot of time banging
my head against the Internet,” I told my friend; I truly felt isolated
Enter Joey Tuan, Cari Allshouse, and their new startup, HealClick.com.
The founders set out with two objectives: 1) To make it easier to find
relevant patient-shared information; and 2) To use this information to
further medical research.
Just launched, HealClick is a revolutionary free platform that
connects patients with chronic illness from all over the world. This
hybrid of a social network and an enhanced medical forum uses
volunteered symptom and treatment information in order to match their
input with other users while at the same time building a confidential
database to be used for research.
“If we can arm ourselves with a database that truly captures our
health [picture] over time, we can then present M.E. and other poorly
understood conditions as problems worth solving to the researchers,
backers, and philanthropists that can help us solve them,” says
co-founder Joey Tuan.
After nearly 900 beta users shared their experiences prior to the
launch, the site is now open for anyone to join. HealClick makes it
possible to not only get information about your condition directly
from other people who have your same diagnosis, but also to get to
know who these people are and what their health experiences have been
HealClick uses technology analogous to dating sites to create a
“similarity score” between patients. It uses each member’s symptoms,
diagnoses and treatments and then suggests members that are
health-compatible based on their input. The site also boasts a number
of traditional social networking features, such as Chat, Personal
Messaging and detailed Profiles, making it easier for members to get
to know each other. The result is a light-hearted, supportive
community that lessens the isolation of being chronically ill.
HealClick also sets itself apart from other patient forums with its
ease of use and by serving numerous diagnoses. Highly-sought treatment
reviews are in a dedicated section instead of buried among endless
posts. For example, users with over 20 autoimmune and poorly
understood conditions can easily discuss their treatments and coping
strategies for nausea. This kind of information would normally be
scattered across more than 20 separate diagnosis-specific forums.
Discussions can also be sorted into categories for one condition only,
making it very adaptable to the user’s needs.
Today the HealClick team launches its Indiegogo crowdfunding campaign
to develop the components necessary to collect data and make it
research-ready. “If we raise just $50,000, we can build a
state-of-the-art website to help millions of patients,” Tuan said.
Among the features slated for development are an integrated mobile
health tracking app and upgraded servers to sustain HIPAA-level
encryption of the patients’ data. The team is also working on refining
the matching process through the addition of standardized lab results
and technology called natural language processing.
As a patient, I’m very excited about an easy-to-use tracking app, one
which will allow me to daily track my symptoms and treatment by
answering a few simple questions. The de-identified data from this app
can be made available to researchers to identify correlations and
patterns over time. Many chronically ill patients together could
change the course of research for their conditions simply by clicking
on a few answers each day.
Ultimately, HealClick strives to empower patients by designing the
tools for them to educate each other and to directly participate in
research solutions. Anyone can sign up by going to www.healclick.com.
Emily Craven is a former domestic violence advocate. Prior to becoming
ill she was an avid traveller and passionate about education. She has
severe Myalgic Encephalomyelitis and has been battling the invisible
illness since 2002.