Today is the launch of HealClick, a website matching patients with similar conditions so they can share relevant treatments and experiences. Above is a 2-minute video illustration of who they are and what they're doing:
I have been visiting Internet sites now over the last 10 years since becoming ill and having many different diagnosis. It is clear to me that patients are becoming much better informed and sharing information and research that they can discuss with their doctors in order to find the best treatments to help themselves. No longer must we suffer in silence depending on the sole opinions and experiences of one doctor, there is so much more available that might help us.
This sounds to be a very promising website where patients can share information and maybe it may help to lead to better research projects.
Patients do seem to be leading the way over treatments and research agendas in some of these little understood illnesses - just the few that I have been diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal disease, Polymyalgia Rheumatica and finally Lyme disease (which once treated for, on long courses of antibiotics improved my health), all have overlapping symptoms which are also found in many other diseases.
- HealClick is completely free and will always be. - We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. - Our site is for patients only. We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't. - Matching is what sets us apart. Our site gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments. - Start any kind of topic. If you have a question or an experience to share, we want to hear it. - Review any type of treatment. Tell us about your experience, and compare your results with others. - Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks. - The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html - Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.
Patient power, what a difference it made to the AIDS communities in the early 1980's and that was without the resources we have today on the Internet. I look forward to following the development of this new website Healclick.