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Communications of the ACM


Hope vs. Fear: Privacy Challenges in Online Health Communities

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Ruben Ortega

In the last startup I worked at, we spent a lot of time struggling to come up with a privacy policy that was granular and fine grained and accounted for every possible sharing scenario.  We prided ourselves on being "customer focused" in allowing people to control who got to see our community members' health stories.  We wanted to promote people's health stories, but also make sure they restricted access to user limited community members.  The creation of each feature on the Web site and every new personalization algorithm was impacted by trying to figure out how to keep our customers' information as secure as possible. The problem is that this approach was completely wrong because it focused on people's fears vs. their hopes.

The fear of sharing health information in an online community is all based on "What if..." scenarios:
What if my company finds out I am ill? Will I lose my job or a promotion?
What if my friends find out that I am dealing with a health issue? Will they stay my friends or avoid me?
What if my insurance company finds out about this issue? Will it be considered a pre-existing condition and will my claims be denied?
What if a future company/boyfriend/girlfriend/colleague finds out? Will they reject me just because of some perceived stigma?
Despite the laws, rules, and regulations against most of these scenarios, people are afraid to share health information online. 
The problem with all this fear is that it forgets to acknowledge the benefits of sharing health information, which are based on hope. 
The hope of a discovery of a cure.
The hope of finding people who are survivors and learning how they managed it.
The hope of meeting people going through the same issue at the same time.
The biggest success in the treatment of breast cancer has likely been the creation of the Susan G. Komen foundation. The foundation has yet to find a cure despite raising $1.5 billion dollars for it since 1982. The organization's biggest success has been removing the stigma around breast cancer and creating a supportive environment for women going through the issue at the same time to discuss and share their experiences.  Even for health issues with limited hopeful outcomes like pancreatic cancer,  the sharing of information among patients will at least be able to provide a mechanism to exchange strategies about how to manage and cope with the bad days. 
In revisiting the role of sharing in an online health startup, I would circulate the customer's health stories as broadly as possible. I would only limit revealing identity to other registered members of the Web site and even then I would build tools to help them find each other and communicate. People who are fearful will not participate in the community anyway, and they don't provide any value unless they are willing to share their own stories.
On a broader stage, the difficulties Facebook has had with privacy are actually because people are more fearful of what might be done vs. the benefit of sharing information and participating in a community. If someone attempted to start a Facebook competitor today that focused on image sharing with the tightest control of photos possible, it would likely fail. Part of the enjoyment of using Facebook is that you have a community of people who want to share their lives with like-minded individuals. A Web site dedicated to the strict control of personal information would draw people who don't want to share and would end up stunting the growth as it would be barren of any images, stories, or people of interest.  
My recommendation is if you find an online community, with like-minded individuals and you have something you really want to share, share it. Most of the time you will end up finding someone who will say "That happened to me too!"  If you are torn between fear and hope, I would encourage you to choose hope. 


Stephen Wilson

I'm afraid that Ruben Ortega draws too long a bow. It might be flavour of the month but online social networking is a tiny part of the informatic landscape and still very much in its infancy. So it is perilous to draw broad conclusions about privacy conventions from the OSN experience. People engaged in their own acute health management (for cancer at that), at their most vulnerable, yes most hopeful states are hardly the best judges of the difficult balance between utility and privacy.

Some of the early trials of medical social networking for mental health -- where patients engage with other patients and with qualified psyciatric counselors -- are showing excellent results. These results point not to any dimunition of privacy but rather suggest we need to strengthen privacy and online anonymity so as to foster confidence and encourage participation.

Stephen Wilson,
Lockstep, Australia.

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