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Re: Next Wave Connect
Thanks for the useful information.
Facebook is a threat to your privacy and future
People who have no life, or those who are trying to find one, migrate to Facebook. It's the largest voyeur website on the planet and if I check my page 3 times a year, it's more than enough. I ran a department for a business, and those who claimed they are social media experts, said we must be on Facebook or we'd not succeed. It's the furthest from the truth. We never made a single sale, and a positive review on Google hold 1000X more the weight in customer potential than any gimmick FB or those who profit on the hype can throw at you. As a result of facebook friends have reconnected, but at the same time people are stalked, have been murdered, marraiges have been busted up, there is zero privacy and as far as we know, Facebook has been completely compromised by government security agencies for no other reason to collect data and spy on zero threat individuals. I say Facebook is a threat to the freedom we once enjoyed.
Next Wave Connect
Another site worth checking out, particularly for those who work in health IT, is Next Wave Connect, which I wrote about a few months ago -- good for comparing notes on topics such as ICD-10 and whether it's ever going to be implemented. They talked to me about broader ambitions for tackling other areas of healthcare operations, including clinical issues, but for now the communities are mostly IT focused.
Re: Facebook for medical discussions? No thanks
Facebook's still a great place to crowdsource a subject (could be a health subject) and get quick answers from people you trust. But the site's very unsubtle method of slapping ads all over your newsfeed page based on the content of your posts is turning me off from posting anything at all.
Re: The Critical Ingredient: Trust
Absolutely, @shakeeb. I'm not a physician but some of the medical-focused sites seem really useful for doctors, especially the ability to interact and ask questions. I see the allure of online patient communities but I'd want to know my data wasn't going to be used in any way; I'd even want an opt-out button for anonymization of data, quite frankly. I'd also want to know who was behind the company and what would happen to data if the company was acquired or folded. If I did join, I'd definitely use an anonymous email with a pseudonym on both my email and account. (I know the IP address is a giveaway but at least the name is masked.)
Re: Facebook for medical discussions? No thanks
I've posted occasionally when I've had a headache or am exhausted, but I wouldn't go into any other details than that. Given Facebook's analytics and ability to track users, I won't even look up any disease on Facebook, to be honest! I'm scared they'll add it to my profile and the big database in the sky will have me listed with all sorts of things I don't have but was interested in learning about for whatever reason.
Re: The Critical Ingredient: Trust
If patients themselves choose to discuss their own conditions and symptoms, that's on them to some extent. And I fervently hope those that go this route choose NOT to log on via Facebook (I should have checked that; as I recall, most sites required email to register). In that case -- and on the sites I checked -- most people used obvious pseudonyms on the patient-focused sites. I'd recommend, as a best practice, sites suggest that in their registration pages.
Re: Hello, HIPAA?
From my understanding of these sites, even the sites that are exclusive to physicians do not discuss patients by name or other identifiable information. So they might talk about a male patient, in his 50s, who has diabetes and smokes, but they won't say it's James Smith of Cleveland.
Re: The Critical Ingredient: Trust
@Alison I agree with you. At the same time isn't it also important to look more in to privacy of the ones who has joined for these sites.
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7/10/2014 | 6:01:43 PM