Monday, August 12, 2013

Would I share my personal health data?

My previous post included some of my personal health data. The Word document produced by the Dexcom software even includes the word Confidential in the footer. As I'm creating a new health related product, I must pay special attention to data privacy. I also need to think about different feelings people may have towards sharing their data.

Some time back I learned that Mendor, a Finnish startup company focusing on diabetes treatment, were installing their software product, the Mendor Balance, to the diabetes clinic I visit. Unfortunately that software did not support my glucose meter. However, when I contacted Mendor about the matter they said they'd be happy to build the support if they just got some example data from an actual device. So I sent them the logs from my meter, including real measurement data over several months. I had no concern over what they might think of me as a diabetic or as a person, based on that data. They just wanted to get some sample data to implement a piece of software.

Whether I feel comfortable sharing my personal health information depends on how I believe that information is being used.

Of course, in direct contact with a person, sharing information is much easier. I've had almost no concern explaining everything about my life to the doctors and nurses who have helped me with my diabetes. The more information they have, and the more accurate that information is, the better they can guide me.

I think I've shared even more with the people in my peer support group. There it's all about finding the fun in living with diabetes, we all exaggerate our foolish behaviors and the mistakes we've made. Absolutely no fear of judgement or patronizing. I've shared more than just data, I've shared stories, big and small.

That's one thing in itself, isn't it? I feel much easier disclosing sensitive information when I can annotate it and share some additional background to it. I'd be reluctant to share just some cold piece of data, just describing a tiny tiny piece of myself, as I wouldn't like people (or computer algorithms for that matter) forming their opinion of me just based on that data.

I must admit, for the previous post, out of seven days of monitoring data I selected the day with the nicest graph. The graph for the whole week is much less stable. It's just that I don't know all of you and you don't know me well enough, for me to feel comfortable sharing the bad days. I'll probably get more comfortable with that as well, once I get enough background context out in this blog.

Whether I feel comfortable sharing my personal health information depends on

  1. how I believe that information is being used
  2. whether I believe that piece of information is both adequate and meaningful for that purpose.

Of course, there is also the whole issue of trust in general. I'll probably contemplate that in another post.

1 comment:

  1. Similar results reported by FierceHealthIT from a study: Sensitivity of e-health data not used in care a low concern for patients, with an excellent quote: "Why is our first obligation not to ensure that our patients' data are used for research as they wish and expect them to be used?"