5-minute survey: Sharing Health Information

Quantified Self Research & Media
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Sharing Health Information Survey

Have you thought about sharing your tracking data or health information with others?

Please visit this 5-minute survey about Sharing Health Information and contribute your views:

 http://hosted.traitwise.com/dhealth

All responses are anonymous and cannot be personally identified. Results will be submitted for publication in 2013.

Thank you in advance for your participation.

Kind regards,
– Thomas

K. Thomas Pickard
@kthomaspickard

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Hi, Thomas,

Thanks for gathering this information–it will lead to an interesting publication. One total nitpicky reminder (truly a nitpick!): survey data are confidential, not anonymous. This idea holds water even better when the data are collected online. Perhaps consider revising your informed consent statement.

I think the questionnaire gets at this itself when asking the “I am concerned that anonymized health and medical information will be re-identified” question. Survey data can be re-matched easily (IP address, MAC address, etc.), so it doesn’t seem fair to promise anonymity about demographic/health data or opinions collected as a part of the survey.

Help the data nerds trust your methods.

I reiterate, this whole post is an anal-retentive nitpick. :slight_smile: Thank you again for performing the study in the first place.

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Dear ThisUsernameIsNotMyRealName,

You raise an important question about privacy and research: How do we get people who we do not know (or have met through online forums like this) to share their health information? In my experience, the “trust relationship” I have with people I have met in person is much stronger than the one I have with those I have met online via social networking. Why should you trust me with your health information?

As I see it, the difference between “confidential” and “anonymous” is about how information that you disclose about yourself can be potentially re-identified. This survey is anonymous because anything that might potentially be used to identify you (IP address, MAC address, etc.) is not recorded. “Confidential” implies that the identity of the respondent is known and that your personally identifiable information will only be shared with your explicit permission.

Despite your reservations, I want to thank you for your participation in this survey. We now have 100 responses and will be entering the data analysis phase shortly.

  • Thomas