Those with chronic conditions are more likely than other e-patients to
report that their online searches affected treatment decisions, their
interactions with their doctors, their ability to cope with their
condition, and their dieting and fitness regimen, according to Susannah Fox's just released report from the Pew Internet & American Life Project titled: E-patients With a Disability or Chronic Disease.
NPR aired an excellent story yesterday that highlights this important data and gives insight into how people (and their families) with chronic conditions are using the Internet to help with health issues.
The piece indicates that "the Internet is changing not just the way patients get medical information, but the way they interact with doctors, their families, and even with strangers."
Coming back from the 6th Annual Information Therapy Conference this week, this is clearly a significant issue. New technologies and changing behavior for how people are getting health information means there is an opportunity to fix one of the biggest challenges facing the patient doctor relationship: patients are going to the Web for health info, and physicians are actually telling their patients NOT to go to the Web.
One of the big health care challenges today is that many physicians do not have a trusted and unbiased online resource they can prescribe to their patients to guide them to the very best health information. But we know that more people start online to find health information than ask their doctor. The reality is patients are going online (and they will continue to do so) and physicians know that the current clutter online may do more harm than good so they are not sending patients to places like Google (where most people start their health searches).
There is clearly a disconnect here which is one of the reasons why we are working hard to build the first doctor-guided search service so physicians will have a credible option to recommend patients too. From our perspective, the Web is broken for health until it is organized in a way that physicians will recommend it as a credible, helpful resource to patients, friends and family. There are already great content sites and health portals like WebMD, RevolutionHealth and Health Central. There are great content providers like Healthwise, A.D.A.M. and The Mayo Clinic. The problem is, people are being connected to the right information, at the right time. And with 40-50% of the health information online now resulting from user-generated content, there is a lot more going on than evidence-based information and encyclopedia articles on health. In fact, it's one big mess of spam, clutter, UGC, and duplicative content.
The NPR story highlights the experience of Terry Wilson who was diagnosed with kidney cancer in July. "He went straight to his computer. There was so much information out there that, at first, he felt overwhelmed.
"It was sort of scary at first," he says, "because there was no way to put it in perspective. There was no person I could talk to, to say: What's good information? And I didn't look that much, because my wife was afraid I was getting too upset over... what I was reading, that I would feel like I was doomed. And so she tried to keep me away from it as much as she could at first."
There are many great companies now working to solve this problem so that we can make the Web less scary for patients and physicians. Together we can put this information in perspective, filter out the junk and guide people to great resources.
>> If you believe in the need to fix this problem the way we do and want to help out, please check out our Guide program. We are recruiting nurses, physicians, patient experts, members from health foundations, stay at home parents, college students and anyone who cares about helping organize the world's health information to help others.