The following is a guest blog post by Ryan Prior, a journalist producing a documentary film on complex, chronic diseases.
HealClick, a new Internet startup based here in Las Vegas, is launching a $50,000 campaign this week on the crowdfunding site Indiegogo,. The company, founded by collaborators Joey Tuan, Beth Mazur, and Cari Allshouse is a patient-sharing website catering to sufferers of poorly understood chronic illnesses such as fibromyalgia, lupus, Lyme disease, rheumatoid arthritis, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The site targets these diseases because they are complex immune-related illnesses with overlapping symptoms. Physician education on these illnesses is often lacking, and patients are often required to research diagnosis and treatment options on their own.
Tuan compares his team’s new website to Yelp, the popular app and “online urban guide” popular for its open-source restaurant reviews. For travelers in an unfamiliar city, Yelp’s services help out-of-towners navigate the hidden hot spots of a new city like seasoned locals.
However, there is no obvious equivalent in the murky medical landscapes of poorly understood chronic diseases.
“I always dreamed of a Yelp for medical treatments when I was a patient. There’s Yelp for everything else, so why not treatments?” Tuan said.
Early on, he started a public Google document on which patients from all over the world gave information on their bio-markers and their treatment protocols. Even from the beginning, clear trends began to emerge and Tuan saw the potential for something much larger.
“My experience as a patient convinced me that a Yelp for treatments would be a website that personalizes treatment reviews to your entire set of medical details, rather than just your diagnosis. Also, I believed we could build a revolutionary database for research data if we could provide a a much more engaging, user-friendly way for patients to enter data than Excel sheets and questionnaires.
The HealClick platform seeks to use social engagement and data mining to bridge this jarring gap between patient and informed quality healthcare. It empowers users to create personalized online profiles detailing information on their symptoms, diagnoses, laboratory test results, treatments, and other details. Patients can then use the site’s patient matching feature to find their “doppelgänger,” a patient who shares similar characteristics in age, sex, diagnosis, and response to various types of treatments.
The founders hail from across the United States. Cari Allshouse, a patient from Delaware, specializes in building the brand’s social media imprint. Beth Mazur, an MIT computer science grad from San Francisco, programmed the site’s sophisticated patient-matching algorithms. Joey Tuan, who hails from Las Vegas, handles the startup’s business operations.
For Tuan, HealClick is as much a survival mechanism as it is a business venture. A graduate of the University of California-Berkeley, he has suffered from ME since 2005. Myalgic encephalomyelitis, or “chronic fatigue syndrome” as it’s been called in the U.S. since 1988, is a severely debilitating neuro-immune disease with no FDA-approved treatments and little research funding despite its high prevalence.
He was forced to quit a well-paying job as a consultant and would eventually spend as much as $200,000 over seven years in a desperate search for answers to a disease about which most doctors are taught very little, if anything, in medical school.
That’s where HealClick comes in. Through building a large and robust data set, HealClick’s founders hope to engage universities and research institutes in collaborative partnerships, sharing voluntary patient information with researchers capable of making sense of large data sets and complex problems.
By the time this story goes to press, HealClick will have likely inked its first collaboration with a research institution, whom Tuan wasn’t ready to name. “Imagine if we have 4,000 users with one illness: I think we’ll have research collaborations set up by year one.”
On the patient side, nearly 1,000 users have joined the HealClick community during the site’s private beta testing phase. That number is likely to grow sharply now that the company has perfected its algorithms, grown its social media following, and launched its public site.
HealClick is just one part of a broader Health 2.0 revolution taking place across medicine. Facing ever-increasing demands on their time, doctors increasingly rely on informed patients to become equal partners in their healthcare. These so-called “e-patients” are becoming a integral part of the nation’s healthcare infrastructure. Obamacare included $150 million in its FY 2012 appropriations for the Patient Centered Outcomes Research Institute (PCORI), which formalizes the role of well-informed patients and caregivers in federal healthcare policymaking. Stanford University recently added an “e-patient scholarship” for its annual MedicineX conference, literally giving e-patients a front row seat and even an onstage role at one of the most dynamic bio-tech conferences in the world. Tuan applied to be a speaker at this year’s conference.
“I honestly look at patients as healthcare professionals in their own right,” he said. “And conferences like MedicineX and PCORI’s patient advisory panels are beginning to move in that direction.”
To sign up, go to www.healclick.com
To contribute to HealClick’s crowdfunding campaign, please click here: www.indiegogo.com/projects/revolutionizing-patient-sharing
Ryan Prior is a journalist from Atlanta, GA. He has written for the Daily Beast, USA Today, Real Clear Politics, and numerous other publications. He is currently producing a documentary feature film on complex, chronic diseases entitled “The Blue Ribbon: ME/CFS and the Future of Medicine.”