Facebook Health? Thumbs Down - InformationWeek

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Healthcare // Patient Tools
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10/6/2014
10:22 AM
Alison Diana
Alison Diana
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Facebook Health? Thumbs Down

Facebook may be eyeing the healthcare space to create new communities and apps. Given Facebook's privacy history, users will be wary.

Facebook: 10 New Changes That Matter
Facebook: 10 New Changes That Matter
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Facebook, already an expert at building communities, collecting a wealth of members' information, and developing a powerful search tool, reportedly is ogling the healthcare market -- although it may use a pseudonym.

The company is considering creating online support networks to connect people who have various conditions, and a small group of internal staff is reviewing "preventative care" apps, Reuters reported. Facebook might use a spinoff or separate company to operate these healthcare initiatives, according to the news service.

While I'll post the occasional complaint about a headache or flu on my Facebook feed, I am uncomfortable about entrusting Facebook (under any name) with deeper insight into any medical information beyond the odd ache or pain. Last week the company published a public mea culpa and promised to "do better" after previously demanding that drag queens, transgenders, stalking victims, and others use their real names on their Facebook accounts.

[Facebook has apologized for toying with users' emotions. See Facebook Mood Experiment Prompts New Guidelines.]

Part of Facebook's hunger for healthcare came after it determined diabetics searched the site for advice on their condition, an ex-Facebook insider told Reuters. Of course businesses perform analytics and diagnostics on how customers use their products or services. But when you have users' real names, the names of their closest friends and family members, and add in their health information, the small hairs on the back of my neck rise a little -- unless there are some very firm, very clear privacy agreements written in plain English.

Online communities for patients with chronic conditions like diabetes, cancer, fibromyalgia, or chronic fatigue syndrome are not new. Typically, they offer patients, families, and caregivers information on the condition and treatment, support, chat areas, and sometimes shopping. But privacy and revenue are sensitive areas. While some patients freely share information about their conditions, others prefer to keep that information private from colleagues, employers, marketers, or the world at large. With complex, frequently changing terms of service and a poor track record of safeguarding users' privacy, Facebook will have a tough time convincing some users it will treat health-related information differently from cat videos or complaints about poor service at a restaurant.

Whereas new sites start from Ground Zero and must prove they are worthy of members' trust, a Facebook healthcare community begins at a deficit for some. Only last week it apologized for toying with users' emotions in its mood-manipulation experiment.

Privacy questions arose again last week after Facebook rolled out a rebuilt version of Atlas, an advertising service it acquired in 2013 from Microsoft. The software was designed to allow advertisers to use Facebook members' information to send them targeted ads on outside sites, especially on smartphones and tablets, which raised questions about intrusion.

"This expands the surveillance economy into ever more important and intimate aspects of a person's life," particularly when it comes to cross-device targeting on mobile, Neil Richards, a professor of law at Washington University in St. Louis who studies digital privacy, told PCWorld.

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Alison Diana is an experienced technology, business and broadband editor and reporter. She has covered topics from artificial intelligence and smart homes to satellites and fiber optic cable, diversity and bullying in the workplace to measuring ROI and customer experience. An ... View Full Bio
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David Wagner
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David Wagner,
User Rank: Strategist
10/6/2014 | 12:31:00 PM
Perfect
@Alison- I don't know. This past week I was diagnosed with kidney stones. The first thing I did after waking up from the heavy arsenal of drugs they gave me to get rid of the crazy pain I was in was go to Facebook to talk to my friends about it.

There are obvious reasons for this. I wanted to know if anyone had gone through it before. I couldn't really do much else form bed anyway. I wanted them to know why I was suddenly silent when I'm an active poster. And let's face it, I wanted sympathy.

People are already going to Facebook for their health issues. They might as well have a more formal mechanism to get the best access to community possible.
Lorna Garey
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Lorna Garey,
User Rank: Author
10/6/2014 | 12:50:27 PM
Re: Perfect
I fall into Alison's camp here. Kidney stones, a flu, or a migraine are one thing. But discussing more chronic conditions, like diabetes or cancer, could backfire big time if an employer (or potential employer) saw that info and used it a career decision. No matter how many privacy assurances Facebook gave, I'd never trust it with anything I would mind the world knowing.
David Wagner
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David Wagner,
User Rank: Strategist
10/6/2014 | 12:57:21 PM
Re: Perfect
@Lorna- Well, that's fine. But that seems to leave like 90% of illnesses on the table. Seems like there's plenty for both Facebook and its customers. Plus, some percentage of people with more "private" illnesses won't necessarily be afraid to share depending on their life situations. 

There are obviously tons of forums out there for illnesses, but few are as large or have the ability to bring people together as Facebook. I think this will be great.

Though I agree with you, if i had a mental illness (which carries more stigma in the US than it should) I would certainly keep it off Facebook. There are limits.
Lorna Garey
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Lorna Garey,
User Rank: Author
10/6/2014 | 1:25:25 PM
Re: Perfect
Oh, and sorry about the kidney stones. That does NOT sound like fun.
David Wagner
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David Wagner,
User Rank: Strategist
10/6/2014 | 1:32:33 PM
Re: Perfect
@Lorna- Thanks. Last week was rough. I've got the right combo of medicine now that let's me stay awake but pain-free. :)
anon0566345261
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anon0566345261,
User Rank: Apprentice
10/6/2014 | 1:25:56 PM
Re: Perfect
The biggest complaint I have is that all too often whatever personal information we thought we had on the web is and was no longer personal.

I agree with @Lorna when it comes to employers doing background checks they now request/require your social media user names, some ask for passwords if the pages are set to private when filling out job applications. If you have a chronic illness that may require you to take multiple days off work, and are in the market to find a new job, do you pose some sort of risk for being able to do your job? This sort of prejudice can also show in family's who have multiple kids that are in multiple activities or in families with kids who have some sort of malady. If you have a child who has special needs your time at work could be jeopardized if medical / special care is needed at home.

The old adage kicks in: Perception is reality. Even if you never missed a day of work or an occasional day and have had an illness for a while, once the cat is out of the bag, now everything you do could be scrutinized. Think about the young workers just out of college today. Many of them have pictures of them partying on Fri/Sat weeks or months ago and yet miss work one Monday and suddenly they are labeled or called out. Or what about a husband and wife on the rocks. Does that suddenly discredit any decision that they have made while their family is in turmoil, because people who are under duress can make rash decisions.

Then on the other hand, how soon will it be that someone will talk about a chronic illness and suddenly get targeted for research drugs, advertising etc.? Or asked to participate in other activities regarding their illness. While almost all are looking for a sympathetic ear, most individuals don't understand how far the reach and lack of privacy they have when they post things in social media.

It's not fair by any stretch of the imagination that in this day and age we could be discriminated against because we have an illness, but making it easier to track on social media is just begging for issues.
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. 
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 | 1:49:44 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. 
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 | 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.
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.
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 ...
David Wagner
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David Wagner,
User Rank: Strategist
10/13/2014 | 7:48:44 PM
Re: Perfect
Alison- Right. None of them have the baggage of Facebook. But none of them have the reach and scope of Facebook either. It is a tradeoff.
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.
JoshuaN169
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JoshuaN169,
User Rank: Apprentice
10/9/2014 | 4:53:50 PM
Re: Perfect
Hi Alison,

Could you please point me to wear you read about this?  I'm very interested.

Thanks!
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. 
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. 
David F. Carr
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David F. Carr,
User Rank: Author
10/6/2014 | 8:32:12 PM
Yet social healthcare is a thing already
How does my wife know when friends and relatives have stopped using their Fitbits or are outpacing her and daring her to do better? Because of an app that shares those stats on Facebook. Not surprising that FB sees the potential when it is already happening.
Alison_Diana
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Alison_Diana,
User Rank: Author
10/7/2014 | 10:08:18 AM
Re: Yet social healthcare is a thing already
Sure, bragging that you ran 5 miles or sweated off 2,000 calories is part of social media, especially Facebook. But discussing the pain of losing a limb or the depression of supporting a child who's got leukemia on a Facebook community? I'm sure some will have no problem with it. But, for me, I wouldn't want to reveal my innermost turmoil on a site that's known to have done so many 180-degree flips with user privacy.
Laurianne
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Laurianne,
User Rank: Author
10/9/2014 | 4:48:23 PM
Re: Yet social healthcare is a thing already
I never go anywhere near health discussions on Facebook, and I won't. Not surprising FB wants in but I don't see many consumers helping them...
Susan Fourtané
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Susan Fourtané,
User Rank: Author
10/7/2014 | 2:41:31 AM
Facebook a medical resource?
Alison, 

"Part of Facebook's hunger for healthcare came after it determined diabetics searched the site for advice on their condition ... "

When I read that I couldn't help but wonder what kind of people search for specific medical advice on Facebook. On Facebook? Since when Facebook is a medical resource? There are plenty of good, trusted medical resources on the Internet. 

So, after that, I thought if people are not getting from Facebook what they deserve. After all, Facebook is just a business and it's going to seek opportunity anywhere where it sees it. 

-Susan
Alison_Diana
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Alison_Diana,
User Rank: Author
10/7/2014 | 9:14:36 AM
Re: Facebook a medical resource?
It's so important to search on sites that have medical approval or backing, sites like the Mayo Clinic for example or CDC. If you're seeking information on a condition you may or do have, you can make yourself sicker sometimes if you seek information on off-shoot sites. That said, not all medical information is accurate and some people do heal or live better lives with alternative treatments. Support groups, in and of themselves, don't necessarily have to be sponsored by anyone affiliated with a medical organization. After all, people join these sites to get support, ask questions of people going through the same thing, see if their drug side effects are the norm, and so forth. I am sure Facebook can technologically provide all that and more. I'm just uncomfortable, given the company's past history with user privacy. 
Susan Fourtané
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Susan Fourtané,
User Rank: Author
10/7/2014 | 9:29:17 AM
Re: Facebook a medical resource?
Alison, 

Exactly, sites that have medical approval and trusted information. When I want to read about certain condition I usually check the Mayo Clinic. Web MD is also good. And there are others where you see the information is reliable.

I recently found out, for example, that when you take iron supplements for several months you can gain weight, that you lose when you end the treatment. I suspected about this, but I was not sure about it. I checked and got the confirmation.

But I would have never asked Facebook, or any FB group. Maybe it's also because I don't link FB with something like health, or anything of the like.

-Susan  
Alison_Diana
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Alison_Diana,
User Rank: Author
10/7/2014 | 10:05:44 AM
Re: Facebook a medical resource?
We'll also see patients increasingly empowered to seek information directly from their health systems as hospitals and affiliated physicians use portals to communicate with and educate patients. In addition to scheduling appointments and getting lab results, the most forward-thinking providers already use portals to share information on a range of conditions like diabetes and heart health, exercise, healthy recipes, etc. Often they license content from reputable medical sources and couple it with information derived from their staff -- such as blogs from their clinicians, videos of their various departments, etc. -- giving their community access to useful medical information from a trusted source within their very neighborhood. Part of population health and patient engagement trends, portals are a great way for hospitals to remain part of patients' lives when they're no longer 'patients' and to help consumers remain educated and healthy. 

They also, if done well and marketed successfully, alleviate the need of people to go to a site like Facebook for virtual support since they combine the benefits of both virtual and physical support from a local healthcare provider.
BillB031
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BillB031,
User Rank: Moderator
10/10/2014 | 2:06:36 PM
Reminds me of why I quit FB
This article reminds me of precisely why I quit Facebook two years ago.  The whole business model of FB is to intrude into your life unsuspectedly, to sell off your personal information to anyone willing to pay for it.  All they provide is this phony playground to keep you busy contributing.
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