Dave tells his story on how he was able to connect online and find the help he needed as a cancer survivor and goes on to say that if he had, he wouldn’t be here to talk about it today. Since Dave did his research though we have had just this huge explosion of data and sources emerge on the web and sometimes you wonder “where do I go” as he stated, you keep looking. This gets a little testier out there today as with advertising and marketing exploding in healthcare, you have to be careful and get to where you want to be. Heck we have devices, websites and so forth collecting data about us faster than we can do it ourselves.
I just read today where Facebook is not one of the top locations for finding 
healthcare information and part of the reason why is that we are now more careful on where we share our data due to those who scrape and touch on privacy information. Sure Facebook is a place to maybe find old friends and so forth, but today with profiles being built it’s kind of dangerous to “bear your soul” on there with everyone using analytics to gain intelligence and make a buck and sometimes human lives are impacted here with justifying numbers. The Stanford lecture at the link below lines this out for you on the web as to who’s collecting data and some of who sells it.
You Are the Product–Privacy Anonymity and Net Neutrality On the Internet - Excellent Stanford University Lecture (Video)
Everyone wants to engage the consumer with technology but what technology do you use and how can using that technology be used against you? It’s a big deal out there today. We talk a lot about Personal Health Records and this is a good thing but it is not always as simple as it looks and I remember when Dave did his Google Health report and found issues that needed to be addressed, in other words bugs.
New Report on Engaging Patients–Still Misses the Boat With Failure to Create Value for Consumers - “Magpie Healthcare” Paradigms
Doctors who work in hospitals get the benefit of having “scribes” enter the data and as a consumer if you need help with a PHR, you usually have to find an “online scribe” in other words pay a company to do it for you and help enter the data, so the “scribe” process is there for patients to, just in a different format. If you are with a system such as Kaiser, they make it easy for you as their system was designed from day one to collaborate and share data, something the rest could learn from. In addition to this challenge for some strange reason or another we keep getting all these news reports that tell us how “stupid” we are and that does nothing to encourage participation at all and thus I asked for these types of stories to decline in news coverage as positive reinforcement is always the better tool with education.
Cease and Desist Request for Publishing News and Studies That Report on How “Stupid” Consumers and Patients Are
I have even had a few people discover treatments on this blog that they did not know were out there and to me that makes this place worthwhile to keep up. I try to talk straight and forward to also address some of what to watch out for too as analytical formulas are on steroids today and we get some very strange interpretations. Then too we have no role models out there, other than Dave and a few others to help. We don’t have anyone working in healthcare that opens up and shares to be influential.
Here’s an example of HHS trying to improve literacy, well what do they do themselves after all we live in the “social world” today and again with marketing out there today, who and what do we trust so we don’t make a wrong turn? Are the folks in those positions not patients and consumers too?
HHS National Plan to Improve Health Literacy – Not Going To Happen Until We Focus on Using Technology (The Tool for Literacy) Which Includes Role Models at HHS And Other Places in Government
Marketing is bad out there today that the FDA and FTC are working harder than ever to keep with all of it and take unproven advertising information off the web and as soon as some are gone, new ones come up. 
Company Advertisements Get Caught Making False Claims And Are Called to Task And So Much of This Activity is in Healthcare
The Greatest Movie Ever Sold” Just Like “The Greatest Healthcare System Ever Sold”- Same Paradigms-Colbert Report (Video)
Like Dave said he found his information with collaborating and shoot when looking for doctors online today, some of that information is flawed too as I found my 8 year deceased former MD still practicing in some kind of after life, in other words records not updated.
California Doctor Who Passed Away in September With Being Stuck in a Chimney Still Searchable on MD Referral Sites
So the word here is to be persistent and be careful to a degree today as things are getting tough out there today with so much marketing in healthcare that is polluting the value of what we need to seek out and find on the web. Dave said he found information by safely collaborating and when you see commercial efforts just be sure you look beyond the the cover and get to where you need to be. BD
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