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Facebook Health? Thumbs Down
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Alison_Diana
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Alison_Diana,
User Rank: Author
10/6/2014 | 5:15:48 PM
Re: Perfect
That sounds about right, Thomas! That said, there are social networks specifically for clinicians for example that don't have the same privacy issues. And there are many, many online communities for a multitude of conditions. People really have to read the terms of service before signing up, if that's the route they choose. And I would always recommend they join a site where they can use a pseudonym and use an email dedicated solely to online communities so their regular email isn't overblown with spam, just in case.
Alison_Diana
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Alison_Diana,
User Rank: Author
10/6/2014 | 5:12:53 PM
Re: Perfect
There are already several sites that do this, Dave. And none of them have the privay baggage of Facebook. People who, unfortunately, need this help usually seem to know about the sites that match clinical drug trials with patients. Not sure Facebook is the way to go. (Can you imagine the possibilities! Instead of a post that says Person of Interest: Alison Diana likes this. You could see: Clincial trial for XYZ. Alison Diana joined this). Joking, but ...
Alison_Diana
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Alison_Diana,
User Rank: Author
10/6/2014 | 5:10:35 PM
Re: Perfect
Exactly. I just read a story about a financial trading firm that uses anonymous data from some of these health communities to help it research pharmaceutical stocks. When many members start raving about how a medication is working well for their condition, especially if it's off-label usage, the firm may recommend buying the stock. It's not illegal and it's not using patients' names, but it's icky to me as a person. It's an incredible use of analytics, though.
Alison_Diana
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Alison_Diana,
User Rank: Author
10/6/2014 | 5:07:54 PM
Re: Perfect
Even in the Reuters story, Facebook cited how it used its own search tool, which determined many people used Facebook to look up diabetes. This is hardly an unusual use of an internal search tool. Facebook is not alone in this and I'm not bashing them. It's just a cautionary note and a reminder about why I personally would not use Facebook's health communities, given the site's very sophisticated search capabilities that go far beyond what was used here. 
Thomas Claburn
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Thomas Claburn,
User Rank: Author
10/6/2014 | 5:00:21 PM
Re: Perfect
A lot of people distrust Facebook. From Kristen's story about Facebook looking into mobile payments:

"According to the2013 Consumer Insights Report by the market research company Ovum, only 1% of respondents said they trust social networks to deliver mobile payments. "

I expect a similar percentage of people trust social networks to keep health data private.
Alison_Diana
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Alison_Diana,
User Rank: Author
10/6/2014 | 4:49:23 PM
Re: Perfect
Maybe for something like kidney stones (so sorry and hope you're feeling better), but if someone has a major condition and seeks ongoing support, I personally wouldn't want to go to Facebook given the company's questionable privacy record. As I said in the article, I've posted the "I've got a headache that won't quit" comment, but I'm concerned that saying too much about my health on Facebook will get me noticed, not by my friends, but by advertisers. And while getting a few messages from Excedrin Migraine isn't a big deal, I don't necessarily want any and all my various ailments available to everyone from giant drugstore chains to giant retailers. That said, I think online support groups are great -- as long as the ToS are very clear and written in non-legalese so members know exactly how their data is being used, who is seeing/storing/analyzing the info they share, and are notified when it changes in an opt-in manner. 
bdown
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bdown,
User Rank: Apprentice
10/6/2014 | 3:35:27 PM
Re: Perfect
The problem is that you still wouldn't be anonymous to Facebook - just the surrounding community. We see this with their anonymous login feature. I would not trust Facebook with any of this information.

 

I tried to post a URL to an artcile on Mashable talking about the anonymous login feature, but links are currently blocked in comments. Do a Duck Duck Go search for this and you'll find several stories that reference the feature.
David Wagner
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David Wagner,
User Rank: Strategist
10/6/2014 | 1:49:44 PM
Re: Perfect
@Lorna- I think the anonymous forum is anathema to Facebook. And from a business point of view, it opens a can of worms because people will ask for anonymous play of games and other areas of Facebook. 

Also, I doubt people who distrust Facebook would trust them to keep them anonymous.

That said, you are right that the traditional medical forum would permit that. People are used to it. And it would certainly work for many. 
Lorna Garey
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Lorna Garey,
User Rank: Author
10/6/2014 | 1:41:24 PM
Re: Perfect
Or, maybe Facebook could allow people to be anonymous in these forums. That could alleviate many concerns.
David Wagner
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David Wagner,
User Rank: Strategist
10/6/2014 | 1:35:20 PM
Re: Perfect
@anon- I love the idea of Facebook being used to combine people with certain illnesses with experimental drugs and research. The advertising, not so much. But wouldn't it be great to hook up people with rare and possibly fatal diseases with the cure they need? We need someone with huge reach (Google, Facebook, whoever) to be involved in creating a robust national database for this. If Facebook couched it this way and partnered with people who understand HIPAA and take it seriously, maybe that's the way to make this work. 
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