Patient Sharing Site Clicks With Users
By Mary Anne Gates
For The Record
Vol. 26 No. 6 P. 30
It’s no secret that much can be accomplished by networking and sharing information with like-minded people. But the novel concept of patients sharing health information has taken one young man from managing a debilitating disease to managing an entrepreneurial enterprise.
During a 2006 hiking adventure to Half Dome, an iconic granite landmark in Yosemite National Park, Joey Tuan, then a recent graduate of the University of California, Berkeley School of Business, contracted myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition that causes extreme chronic fatigue. The debilitating malady forced Tuan to abandon his consulting job and sent him to bed for six months. Further complicating matters, there currently is no FDA-approved treatment for ME/CFS.
Tuan eventually looked for ways to cope while he also looked for a treatment. “I turned to patient forums and spent five years and over $200,000 trying countless treatments,” he says.
Building a Better Website
Tuan’s Web browsing experience while looking for a remedy helped him design a different kind of patient sharing forum. He focused on two goals while creating the website. His first goal was to create one place where chronically ill patients could share their treatment experiences. His second objective was to gather quality information in such a way as to eventually make it available for research studies.
Now 30 years old, Tuan is the cofounder of HealClick. “We take pride in offering a super-personal experience: warm, user friendly, and personalized. I’ve found that our core users are also incredibly intelligent and knowledgeable. This mix of social support and informative medical support is what I personally find to be our best attraction,” he says.
HealClick, which launched on January 14, matches people with comparable chronic medical conditions “Similar websites break up communities by diagnosis,” Tuan explains. “That never made much sense to me since most chronically ill patients have multiple conditions and a mixed bag of symptoms. This is even more problematic for poorly understood conditions like myalgic encephalomyelitis. So, at HealClick, we match patients by how much they have in common, [such as] diagnoses, symptom ratings, treatment ratings, and age. Now they can see treatment reviews from their best patient matches. I was convinced that patient sharing could help millions if patients were able to instantly meet others with similar conditions.” He adds that the website currently has about 2,500 users. Additionally, users can share their experiences on a blog at http://blog.healclick.com.
Tuan says the website focuses on neuroimmune and autoimmune conditions because they’re largely poorly understood and frequently overlapping. Among the conditions discussed are celiac and Crohn’s diseases, ME/CFS, fibromyalgia, hyperthyroidism, Lyme disease, multiple sclerosis, rheumatoid and osteoarthritis, lupus, and irritable bowel syndrome.
Bringing users together on a patient sharing website such as HealClick, where they can choose to reveal their experiences with a chronic illness, is one feat, but collecting data for possible inclusion in medical research studies is a whole different challenge.
While HealClick still is in its infancy, Tuan, who is determined to collect valuable, high-quality data in a manner that’s in accordance with research community standards, is considering a possible collaboration with the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), a Utah-based nonprofit focused on ME/CFS and fibromyalgia. “We will consult with OFFER Utah to ensure we collect data in a way that’s useable for research. When we’re further along, we’ll explore opportunities to formally collaborate on research studies,” he says.
“The value of information depends on a number of factors,” says Lucinda Bateman, MD, who serves as the executive director of the OFFER. “The best scientific research involves detailed advance planning, effective methods to minimize bias, well-vetted questions, easily interpretable answers in a form that can be readily analyzed, large enrollment, and carefully selected participants who have the right diagnosis and minimal confounding conditions and medications. Most of that can’t be done with open enrollment on the Internet.
“On the other hand, utilizing the Internet is an exciting way to gather a large amount of data for dramatically less cost,” she continues. “Since the field of ME/CFS has been hampered by small studies and lack of financial support, this idea might be the way to overcome those barriers. But certain kinds of information will be more valuable or interpretable than others. I think it will be useful to gather information about symptoms, comorbid conditions, successful treatments, the severity and duration of illness ... and to leverage modern technology to look for clusters or subgroups of interest. It’s also a way of networking and empowering patients.
“The most important resource might be having the potential to contact people who are interested in additional research participation,” Bateman notes. “HealClick could become a rich source of communication between the patient and research communities. Educational materials and research results could reach many people in a short time frame. Certain types of information can be analyzed immediately. Of course, it will also depend on how quickly people sign up and engage with HealClick. Good information could lead to many successful projects over the next few years.”
The process of collecting data destined for use in medical research follows stringent requirements. “In general, the more information available about a person, the more useful it will be for research,” Bateman explains. “For example, it is difficult to study or treat fatigue if [we are] unable to consider variables such as age, [sex], duration of illness, medications, functionality, and other medical and mental health conditions. ... But there are legal and ethical considerations related to research that is expected to be published in scientific journals. Participants must each give fully informed consent; personal health information must be handled confidentially; the study must be of high quality and approved in advance by an independent institutional review board. For these reasons, information gathered on the Internet will be a starting point but may not necessarily be used as the primary data for many studies.
“On the other hand,” she notes, “if thousands of people offer quality information to HealClick, there will be a wealth of information to work with that might provide the groundwork for future research.”
Just as the Internet has helped people instantaneously connect with each other, it also has helped entrepreneurs raise money quickly. In an effort to collect $50,000 to more fully realize its goals, HealClick recently had an Indiegogo crowd funding campaign. While the effort fell short of its original goal, $22,200 was raised over several weeks. “I’m happy about it,” Tuan says.
Part of the proceeds are expected to build a mobile tracker to help HealClick users keep daily tabs on their symptoms, including pain, fatigue, cognition, and quality of sleep. Later, more symptoms can be tracked with customized features, Tuan says. Proceeds also will go toward standardizing self-reported data. “If we collect a lot of data and it’s not standardized, we can’t use it,” he says. Other long-range goals include improving user interface design and adhering to HIPAA-compliant security, according to Tuan.
“The Indiegogo campaign was a great way to really put our name out there, for better or worse,” Tuan says. “To me, the more important advantage is it gives us a ton of immediate feedback from patients about what’s most important to them. Via this campaign, we’ve learned that patients are a lot more excited about our ability to show them informative treatment reviews than our potential crowd source medical research.”
Nevertheless, as HealClick grows, so do the possibilities for medical research. “We are trying to be more aggressive in getting research collaboration going in [the areas of] pain and fatigue,” Tuan says.
— Mary Anne Gates is a freelance writer based in Fort Wayne, Indiana.