I was expecting this to be another post along the lines of "Woe, woe, hacker news isn't as good as it was when I joined last week. Here is how it should instantly change in order to be more/less like this other site."
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).
You're right -- HIPAA et al only cover data that could be traced back to the individual, and this set clearly cannot.
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.
I'm glad you made that point. We are very aware of how important user privacy is for this sensitive information. We want to begin the conversation with users while we're young so that we don't mess it up when we're big (a la facebook).
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.
> we believe the best ethics panel will come from the users
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.
That's true, for HIPAA compliance, there is no negotiation and we will meet that standard.
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.
This particular data set is fine, but we've seen other people release bigger data sets thinking it was anonymised only to find that it wasn't. (See, for example, the Netflix data dump.)
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.
I'm not sure this data is meaningful. I recall searching for several real symptoms that I had, and the step 2 options were so far off that I decided to just try the suggested searches to see the sample results.
Thats really great news. Just checked out the site and it's a good implementation. I'll provide more feedback.
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!
1) I, as well, was glad that this wasn't another "HN is turning into Reddit"
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?
We were getting a lot of traffic in a short amount of time that day, so the site performance was lacking. You might have better luck trying again (maybe wait a few hours until this new HN traffic dies down).
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.
If we assume that reddit only consists on r/programming, then reddit cannot exist without HN. I don't even bother to check out the programming subreddit anymore, as it's just the HN mainpage with way more memes and far less discussion.
As far as the headaches go: We all stare at LCD displays for 6+ hours a day. What more would one expect?
Please consider working with a product designer (note: not visual designer) as soon as possible. The entire site gives off the vibe of being built by geeks for geeks. I understand that this is a MVP but still, there are massive product level decisions that could make this dramatically more user friendly.
The problem is that in the first page, there are three links to Ubuntu on Android, and two for the latest Apache release. Really? WTF is up with all the duplicates here?
Downvoted for being off topic. Please read the post before you comment. It talks about statistics from a symptom checking website created by a handful of medical students, using searches from Hacker News users as a sample. It has nothing to do with the Hacker News website itself.
I read the article, I didn't think you could gather any meaningful statistics from their results, because chances are, people here were just clicking things and seeing how it works. Hence the off topic comment.
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).