How to Communicate with Patients Like You

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By Mary Harris; Founder of Lifelong Wellness Advocates, LLC- Denver
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Many individuals dealing with a serious medical condition take comfort in discussing successful symptom management and treatment plans with others living with the same illness. Advances in internet technology and mobile phone applications now allow patients to access information and share knowledge from personal experiences 24/7 by interacting with the company PatientsLikeMe.

PatientsLikeMe understands the value of people with illnesses having an opportunity to interact with others experiencing similar symptoms, side effects and prognosis. It was founded by two brothers who were inspired to help their other brother overcome the effects of ALS, Lou Gehrig’s disease. Their questions and varied attempts to treat their brother’s symptoms led to the creation of PatientsLikeMe. Like many patients and their family members they wanted to know, “Is what I’m experiencing normal?” “Is there anyone else out there like me?” Since its inception in 2004, PatientsLikeMe has expanded from being a platform for a patient’s journey with ALS to now covering over 500 medical conditions.

There are three tenets that PatientsLikeMe offers the member base; learn, connect and track. Learn from others about your own medical condition and proactively take control of your health care. Connect with others by filtering the online patient community by age, gender, symptoms, and interests. Track your own health so you can see how you are doing and compare yourself to others facing a similar journey. The process of identifying appropriate clinical trials will be easier for members of PatientsLikeMe. The company has created a matching tool that integrates with clinicaltrials.gov. This will enable its members to be notified in a timely manner of specific clinical trials best suited for them.

PatientsLikeMe is a free service for those who want to join. They make money by taking the real-time research and data collected from its members and selling to organizations to expedite the process of developing treatments and cures. Personally identifiable information is not shared or sold. Pharmaceutical companies, medical device manufacturers, researchers, insurance companies and medical services partner with PatientsLikeMe so that they can obtain the data they need to quickly develop products and services to help their own customer base. 

The medical community is seeing positive health benefits from patients interacting with one another. Aetna recently agreed to a one year pilot program with PatientsLikeMe and will direct their insurance members to the web site. 

To join the PatientsLikeMe online community, visit http://www.patientslikeme.com

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