“I am a man who was at the wrong place at the right time,” writes Andrew Schorr, author of “The Web-Savvy Patient, An Insider’s Guide to Navigating the Internet When Facing Medical Crisis.” “I received a diagnosis that changed my life. My hope is that what I have learned and the people I have met can change yours.”
After being diagnosed with chronic lymphocytic leukemia or CLL, Andrew, who began his career in 1972 as a television news reporter in Charolotte, N.C., quickly located a “listserve”, an online community of people with blood cancers around the world sending messages to and from each other. He learned about clinical trials and world-renowned experts in his field. He became a Web research Ninja!
Meanwhile, his company, Schorr Communications became HealthTalk.com and soon thereafter, “PatientPower,” sponsored by the University of Washington. Andrew has personally hosted hundreds of webcasts, town meetings and interviews. By sharing his Internet skills with the creation of his book, he hopes to make a difference. Andrew writes:”Maybe that is why I survived!”
The Web-Savvy Patient guides readers through the steps of “Finding the Experts,” “Learning from this Wisdom of Others,” and “Taking Infomation and Questions to Your Doctors,” all the while becoming a more “Powerful Patient.” Other patients who are profiled or mentioned in the book have been featured on previous Patient Power programs and their stories can be reviewed in audio, video or text format at www.patientpower.info.
Schorr instructs readers to take advantage of the breadth, immediacy and utility of the Web to:
- Provide updates on your situation to concerned family, friends and colleagues
- Educate people on tyour conditrion to help them better understand your situation
- Clarify the ways in which people can assist you and your household
- Delegate specific logistical tasks
- Communicate your preferences with regard to visits, phone calls, etc
- Deal with critical situations by distributing important information to help family members make important decisions
- Broadcast your research needs to get outside input on treatment options
For those who follow his advice and hard-won knowledge of the Web, Schorr advises them to share:
* Become a member or owner of a listserv devoted to your disease category
* Volunteer as a “knowledge provider” in online communitiies
* Consider patient advocacy
* Blog or twitter about your experiences as a former patient and a survivor
* Post video testimonials to tell your story
* Participate in online talk shows
To order a copy of The Web Savvy Patient, click over to Andrew’s Facebook page or order it from Amazon. [24×7]
