Monday, February 17, 2014 New Patient Community Seeks to Turn Patient Sharing into a Tool for Research

Joey Tuan, Beth Mazur, and Cari Allshouse have launched a project to bring ME/CFS sufferers together, and to gather data for future medical research. This is exactly what the community needs - a way to find a "buddy," and a secure means of gathering medical data.

There are only 9 days left to fund this ambitious project. Click HERE to donate.

Reprinted with the kind permission of HealClick.

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 and helpless.

An Ambitious Endeavor

Enter Joey Tuan, Bath Mazur, Cari Allshouse, and their new startup, 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.

Launched last month, 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 to match members with similar users, while at the same time building a confidential database to be used for research. It serves over 20 autoimmune, neuroimmune and other poorly understood illnesses. The ultimate goal is to turn amassed patient experiences into research-friendly data that will yield treatment solutions.

“If we can arm ourselves with a database that truly captures our health 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.

Since the January 14th launch, 1294 patients have joined HealClick. Combined with the 900-plus beta users who shared their experiences prior to the launch, the site now has over 2200 members. Together they have already generated 2247 treatment reviews.

Finding Our Patient “Doppelgangers” and Getting Answers

HealClick makes it possible to not only get information about your illness directly from other people who have your diagnoses, but also to learn who these people are and what their health and treatment experiences have been like. Using matching technology analogous to dating sites HealClick creates a “similarity score” between patients. It uses each member’s symptoms, diagnoses and treatments to suggest other members that are health-compatible based on their input. In addition, the site 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. There are also innovative variations of social networking features such as the ability to mark a post as “helpful” and to send other members “LUV” (support) for posts and comments. 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. First, highly-sought treatment reviews are in a dedicated section instead of buried among endless posts. Second, users with over 20 autoimmune and poorly understood illnesses can easily discuss their treatments and coping strategies for common symptoms, such as nausea. This information would typically be scattered across more than 20 separate diagnosis-specific forums. Discussions can also be sorted into categories for one diagnosis only, making it adaptable to the user’s needs.

Building Technology to Collect and Prepare Data for Research

The HealClick team recently launched its Indiegogo crowdfunding campaign in order 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 natural language processing.

As a patient, I’m very enthusiastic 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. In addition to tracking my own health, the data collected by this app can be anonymized and made available to researchers to identify correlations and patterns over time. The idea that I will be able to contribute data for desperately-needed research from my bed is particularly exciting. 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.

To join:

To support the fundraising effort click HERE.

Emily Craven is a former domestic violence advocate and Reed College graduate. Prior to becoming ill she was an avid traveler and passionate about education. She has severe Myalgic Encephalomyelitis and has been battling the invisible illness since 2002.
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