How STDs can be good for your health: http://schedule.sxsw.com/2012/events/event_IAP9610
David Hale: let’s create a community around this type of data. Want the data to be used in meaningful ways.
NLMs mission Acquire, organize, presesve biomedica data. Now that citizens can create health data, the citizen’s mission is Generate, Organize, Act.
That middle term: organize. We overlap there, so the NLM can play a role.
We’re exposing a lot of our data through APIs. A service or a programmer can help add significance to your health information — you might say “I’m coughing” and a service could run that through our data APIs to provide some machine context [to what “coughing” means].
NIH Social and New Media Policy — “with respect to personal information, the presumption is in favor of openness.” So the default is OPEN. This is a huge shift.
In the policy there’s even stuff baked in about using social media to do clinical trials and recruitment. Now we’re going to actually recruit — there’s issues here, but we’re working on them.
Check out “Rock Talk” blog, extramural research director. 80% of NIH budget goes to extramural research. This blog discusses where that money goes.
Mark Dredze from JHU: Why do social media and health go together?
How does Twitter inform our understanding of health. If we aggregate over millions of tweets, we can get useful signal from the data.
Statistical language processing. Twitter flu trends tracks the real flu rate well. Allergy season. Smoking. Lots of examples of this.
What else can we track? How people use meds. Discovering pt safety issues. Mental health disgnosis. Drug and alcohol use (esp. in young ppl). Stopping medical misinformation.
Deven McGraw: Privacy and security — Edelman report, people are concerned about privacy of health data and don’t trust health institutions to protect their data, and would switch servicers if there were a breach.
Not all health data is protected by HIPAA. If you share health data openly on the internet, none of that is covered by HIPAA. And people don’t necessarily equate their concern about health data with what they practice online. We assume people think what they’re doing is more private than it really is.
So is everyone going to be able to benefit from these data tools, even if they’re squeamish about privacy? Or only people who are more cavalier going to get those benefits?
Hackel: Let’s turn to opportunity.
Anmol Madan: The ownership of data is important. We have a privacy philosophy. We have to get consumers to opt-in. Second, giving pts value from the data. Third, recognize that the pt owns the data and if they want to leave, they can.
Dredze: I’m really excited about the opportunity. Sickweather will look at what your friends are saying and tell you who’s sick. Healthmap being used for public health.
But to give you an idea of how murky it is, the data is public — it’s OK to look at it. But if we start predicting things — we can predict your gender, your political leanings. You put the data out, but you never agreed to have it used in this way. Like the Target ad controversy.
Facebook status updates on people who are suicidal. Imagine the ethical things here, if FB knows someone is suicidal, do they have to do anything? Should they even be “reading” you in this way?
Social networks don’t replace human interaction. It’s not FBs job to be your mom, your mom is your mom. And you don’t have to shop at Target. So there’s personal choice involved.
McGraw: Maybe — but do you as a consumer have real control over what data you’re sharing. I don’t have a way of buying something online and not get ads servicing me about similar prodicts. So right now the choice is don’t use the internet, or suck it up and deal with targeted ads.
Dredze: I don’t think we’re talking about replacing people, doctors. But let’s say FB could predict suicide. Should they do something?
I’m a pediatrician, and I work for an organization that does social media. We’ve established relationships with my pts. I want to be able to use data like that to provide better care — but right now there’s no way for me to make them feel secure about sharing data with me… [I can’t really remember the point of this person’s question[
Dredze: Good point. Who emails? [everyone] Who emails their doctor? [some] Why hasn’t everyone emailed a doctor? All these ethical issues pop up right away.
Hale: lots of stuff is happening in the startup community. The data initiative, that’s where all this conversation is happening. There’s an opportunity for the startup community to be supported
Madan: yeah this isn’t a tech problem. It’s a systems problem.
[different doctor] It’s important to understand that the pts at these conferences are not typical. I have pts contact me all the time on social media, and they have no idea that the contact is not private.
Hale: totally, we have a lot of concern and effort behind health literacy and education.
I’m a statistical NLP guy. We haven’t talked about clinical records — I think this is huge, as big as the genome. We could encourage orgs that have HIPAA clearance to do R&D around clinical data.
Dredze: this is huge, but HIPAA orgs are terrified of clinical data and sharing information with people.
McGraw: and you can’t connect dots with aggregate data. You have to be able to personalize it.
Closing remarks: what’s next??
Hale: big data mashups
Madan: do you remember phone apps from 2005? They were impossible. Helth care is like that now. I hope soon we’ll be able to do development on a fast 1-yr cycle.
Dredze: methods and techniques will start to catch up to the amount of data, so I hope we’ll catch up and do good things.
McGraw: cost pressures meeting consumer pressure around electronic data access will make these issues explode!