Activate Now
ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

How One LLND Treats Lyme disease and Co-infections Using Natural Medicine

Higher vitamin D levels may be protective against acute rhinosinusitis

VIDEO: The Truth About Sugar - New Science Documentary 2015

Vitamin D supplementation associated with improved exercise performance

Pilot Study: Measuring Relaxation Response to the iLs Dreampad

Saffron reduces oxidative stress in metabolic syndrome patients

Specific vitamin D levels linked to heart problems

'Healthy' foods differ by individual

Irritable bowel syndrome may be associated with maternal inheritance and mitochondrial DNA control r...

Print Page
Email Article New Patient Community Seeks to Turn Patient Sharing into a Tool for Research

  [ 21 votes ]   [ Discuss This Article ]
By Emily Craven • • February 17, 2014 New Patient Community Seeks to Turn Patient Sharing into a Tool for Research
HealClick's fundraiser ends on February 25! Donate HERE.

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, Beth 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. 

Post a Comment

Featured Products From the ProHealth Store
FibroSleep™ Ultra EPA  - Fish Oil Optimized Curcumin Longvida®

Looking for Vitamins, Herbs and Supplements?
Search the ProHealth Store for Hundreds of Natural Health Products

Article Comments

Be the first to comment on this article!

Post a Comment

Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Subscribe Now!
Receive up-to-date ME/CFS, Fibromyalgia & Lyme Disease treatment and research news
 Privacy Guaranteed  |  View Archives

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

Featured Products

Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils

Natural Remedies

More Weight Loss than Any Other Discovery in Supplement History More Weight Loss than Any Other Discovery in Supplement History
Natural Relief for Soreness, Pain and Swelling – Putting Out the Fire
Help for Soreness and Swelling: What Do Silkworms Have to Do With It? Help for Soreness and Swelling: What Do Silkworms Have to Do With It?
Soothe, Heal and Regulate Your Digestive System with Nutrient-Rich Aloe Vera Soothe, Heal and Regulate Your Digestive System with Nutrient-Rich Aloe Vera
Probiotic Mint Promotes Healthy Gums & Teeth, Freshens Breath and Whitens Teeth Probiotic Mint Promotes Healthy Gums & Teeth, Freshens Breath and Whitens Teeth

What is Fibromyalgia?
Fibromyalgia Diagnosis
Fibromyalgia Symptoms
Fibromyalgia Causes
Fibromyalgia Treatments
Fibromyalgia Diet
Fibromyalgia Medications
M.E. & CFS
What is M.E./CFS?
M.E./CFS Diagnosis
M.E./CFS Symptoms
M.E./CFS Causes
M.E./CFS Treatments
M.E./CFS Diet
M.E./CFS Medications
What is Lyme Disease?
Lyme Disease Diagnosis
Lyme Disease Symptoms
Lyme Disease Causes
Lyme Disease Treatments
Lyme Disease Diet
Lyme Disease Medications
M.E. & CFS
Lyme Disease
General Health
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing