What's ailing Hacker News?
blog.symcat.com
blog.symcat.com
It was nice to see it was just telling us that we all have headaches (particularly as I had a headache when I used the site, to go with my cold).
What ethics panel did you run it through? What internal policies do you have governing release of such data?
HOWEVER... A comment by cmonsen (founder??) on the original-OP states "User privacy will be critical and we are making that a priority." (1)
So..ya, a bit of #fail here.
Most people don't care about their movie rentals, but will be a lot more cautious about some of their medical history.
I'm in the UK. Rules here are pretty strict. Mostly that's a good thing; you run your intended research by a research review panel, and if it needs ethics approval you do that too. The benefits of that are that people get help from a real mathematician early in the project design so they should be getting the stats and the sample sizes etc right.
Like I said, I'm only gently concerned. And I'm sure they'll get this right.
As a general principal, we will only reflect data back that has been fully anonymized. In fact, we don't collect personally identifiable information (that's why there are only 3 choices for age right now). We are building HIPAA-compliant software (even though it's not legally applicable to us yet). We have a team of advisors, including privacy experts, but honestly, we believe the best ethics panel will come from the users and are very interested in feedback in this respect.
Not when it comes to HIPAA compliance. This isn't about finding the best ethical code of conduct for privacy (which can be tricky), but simply abiding by existing and well-defined rules; all users agreeing you're a paragon of virtue doesn't matter much if you break said law once it does apply to you.
Please understand I've no wish to rain on your parade; it's just that I know all too well dealing with HIPAA can cause some headaches, but that's part of the game when working in anything connected to healthcare in the US.
But there inevitably will be some user concerns that fall outside of HIPAA compliance. So, we see HIPAA+HITECH as a minimum requirement. We don't expect it to be sufficient, however, and that's where user feedback, the "user ethics panel" if you will, comes in.
Interestingly, there was a similar dataset presented at PSB (pacific symposium on biocomputing) of colocalizations of symptoms together with drugs in Bing queries attempting to find novel drug side effects. They too had no problem releasing the data.
To get the rest we are doing two things: 1. adding common queries without matches into our symptom vocab 2. improving the suggested searches algorithm
We launched http://www.kaanzi.com/ and I shared in HN in hopes of getting some feedback. But it lasted about 10 minutes in the front page of "new" thread of HN and we only got about 30 visits total from HN.
I wonder how it works with HN :P
Anyways, it's great to see some success. Keep up the good work!
2) I was one of the people who chose headache just to play around with the site. Incidentally, I never got to finish because the site hung on the last part so I never found out what happens at the end.
Out of curiosity, are there any legal implications of running a service like this? Would the FDA or AMA disapprove of this?
I welcome the opinion of a legal expertise on your later point, but we're taking the appropriate measures based on the advice we've received.
As far as the headaches go: We all stare at LCD displays for 6+ hours a day. What more would one expect?
I guess everyone here has those $5000 chairs, or they stand up or whatever.