Most of us at Patient Power have been devoted to patient education for many years. My wife Esther and I produced our first patient video in 1984; one of the first to acknowledge a patient’s fears and discuss the emotional side of illness rather than just being a dispassionate discussion of a medical procedure. We were also ahead of others because we always featured real patients and family members and never actors or dramatizations. Of course, since then others in the the medical communications world have caught up. Many are still off track in another regard, providing too much information all at once. At Patient Power we are working hard, instead, to give you the type of information you’ve requested to best meet your needs.
Your experience as a patient is probably similar to mine. A diagnosis of a serious illness can rock your world and leave a cloud of uncertainty over your future. The doctor keeps talking and you don’t hear or remember very much. You are filled with questions in the days and weeks afterwards. Unfortunately, if you search on the Internet you will often find long discussions, hard to understand research papers, or someone trying to sell you their product or service. I am proud to say we’re now providing video discussions on very specific topics in “bite size” pieces, often just two minutes in length, so you can get a very clear dose of understanding or inspiration just when you need it.
Presently, we are rolling out video segments in this format in multiple myeloma, excerpted from a town meeting we produced at Ohio State University with our non-profit partner, Multiple Myeloma Opportunities for Research and Education (MMORE). About 200 people attended the in-person event and now thousands affected by myeloma will have access to these brief video segments, some “golden nuggets” from what was discussed and in interviews recorded on site. I think you’ll find as you watch a segment you will feel satisfied you received very specific, easy-to-understand information from a credible source, and that you can come back for other segments when you need that information most. In our view these days, shorter is better, and we are committed to tailoring information to make it accessible for you just when you need it. My hope is that will include easy access on your iPad, tablet computer or smartphone on the day you go to the doctor for a visit or test or are headed home and trying to understand a key issue.
Beyond myeloma, you will be seeing short and to the point videos (increasingly in multiple languages) for other conditions: myelofibrosis and other MPNs, CML, CLL, Hodgkin lymphoma, non-Hodgkin lymphoma, advanced prostate cancer, and PKU to name a few. In this age of “targeted therapy” we think information should be targeted too. Thanks to the Patient Power team and the patients and medical experts we feature for helping us do this for you.
As always, we welcome your suggestions and you can send them to firstname.lastname@example.org
Wishing you and your family the best of health!
P.S. Thanks to so many of you who wrote to me about my new diagnosis, myelofibrosis. I am doing great on a new medicine. That means I am ever more energized for what we do here.
Andrew is the author of the new book The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis. He is a respected medical journalist and 15-year leukemia survivor. He founded healthtalk.com and patientpower.info and has hosted almost 3,000 online talk shows for patients with chronic conditions and cancers. Many of America's leading medical centers support ...