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Another privacy policy to read…from the White House

Wednesday, August 5th, 2009

Yet another policy to read? How about one from the government? As we’ve already detailed in our Guide to reading Privacy Policies, we’re not sure that privacy policies are very useful (to individuals).

This is not to say that we don’t think they should exist and the government should certainly have one.

But think about this. Why should we be less willing to give our information to our government than to our bank, insurance company or Google? Our government’s purported mission is to represent the interests of “we, the people.” Why should the CDC have to rely on a private entity to gain access to data that would help stem a public health crisis?

Unmitigated government surveillance is not what we’re advocating.

But we do believe that the government should have as much data as is needed for us to understand and address the problems we face today. Just not data that can traced back to any particular individual. The tricky part is figuring how to deliver more data with more privacy.

So at the end of the day, while we understand EFF and CDT’s recommendations for the short-term. We hope that in the long-term, we won’t need to limit what data can be collected, what it’s used for and how long it can be retained. All of these undercut our ability to learn from the data.

What needs limits is the ability for data collectors to track and identify individuals.

Yet another policy to read? How about one from the White House? As we’ve already detailed in our Guide to Reading Online Privacy Policies, we’re not sure that privacy policies are very useful (at least for individuals).

This is not to say that we don’t think they should exist at all and we appreciate that the administration is putting real thought into theirs.

But think about this:

Why should we be less willing to give our information to our government than to our bank, insurance company or Google?

Our government’s purported mission is to represent the interests of “we, the people.” Why should the CDC have to rely on a private entity to gain access to data that might help stem a public health crisis?

Unmitigated government surveillance is not what we’re advocating.

But we do believe that the government should have as much data as is needed for us to understand and address the problems we face today…just not data that can be traced back to any particular individual. The tricky part is figuring out how to deliver more data with more privacy.

So at the end of the day, while we understand the reasoning behind EFF and CDT’s recommendations for the short-term, we hope that in the long-term, we won’t need to limit what data can be collected, what it’s used for and how long it can be retained. All of these undercut our ability to learn from the data.

What needs limitations is the ability for data collectors (public and private) to track and identify individuals.

Our goal is to figure out a way of doing that without having to “throw out” valuable data in order to guarantee privacy.

Posted in Interesting Uses of Data, Protecting Privacy in Meaningful Ways, Public Policy | 1 Comment »

Health Insurance Exchanges: How will they work?

Monday, August 3rd, 2009

I keep seeing this in article after article about healthcare reform:

“Members of both parties in both chambers want to create health insurance exchanges, where people could shop for insurance and compare policies.”

http://www.nytimes.com/2009/08/01/health/policy/01health.html?_r=1&hp

What does this mean? Who will run the exchange? How will it work?

How are people going to shop for insurance and compare policies? Based on descriptions of the health plans we get from insurance companies today? That feels unsatisfactory. In my experience, even just choosing between the 2-3 plans offered by my employer felt random.

Are health insurance companies going to have to release more data about what they actually end up covering and how much people actually pay out of pocket per year?

Will customers have an opportunity to review these products and provide their own numbers as a reality check on what the insurance companies claim they will provide?

Grace's Bill - Left Side

Grace's Bill - Right Side

I keep seeing this in article after article about healthcare reform:

“Members of both parties in both chambers want to create health insurance exchanges, where people could shop for insurance and compare policies.”

What does this mean? Who will run the exchange? How will it work?

Are health insurance companies going to have to release more data about what they actually end up covering and how much people actually pay out of pocket per year?

Will customers have an opportunity to review these products and provide their own numbers as a reality check on what the insurance companies claim they will provide?

Above are 2 halves of Grace’s health insurance bill for June. (I wanted to make sure you could see all the details.) Can you decipher it? It’s for an eye exam and contacts! It’s also a sad example of what people mean when they complain that there’s too much paperwork in healthcare. How much $$$ was spent just processing this bill?

And this “bill” (an itemized statement of money owed for goods shipped or services rendered) doesn’t even tell Grace what she owes. She had to call to confirm. Apparently she owed $0. Go figure.

What inane billing stories do you have to share? Post them here! Read about why you should here.

Tags: Healthcare For Everyone
Posted in Interesting Uses of Data, Public Policy | No Comments »

How will healthcare reform affect me?

Thursday, July 30th, 2009

Is this really the most imaginative way we (the electorate) can think of to get in on the debate on healthcare in Washington?

Sometimes I wonder if the questions pollsters ask actively make things worse because they reinforce the vague feelings of fear people have about change.

Are you afraid that a government plan will take away your ability to choose your own doctor?

Are you concerned healthcare reform will increase costs?

Why are we passing legislation based on people’s fears?

Isn’t the human condition all about fear of change?

If that’s what we’re going on, why would we ever pass any legislation?

This is useful for helping Washington identify what fears to address (or play up).

But it isn’t particularly useful for figuring out how to address those fears.

What’s needed is a way to connect the dots from our individual situations to the wonky plans and provisions floating around Congress.

And I don’t just mean a personal calculator to figure out “How is this plan going to change my personal healthcare experience and healthcare costs over the next year, 5 years, 10 years, 30 years, lifetime?”

To successfully connect the dots, there needs to be a way for us to engage in a conversation that builds and evolves as old issues are resolved and new issues arise. Thus far, the way this has been attempted are with story forums and town hall meetings. But as I explained here and here, there’s only so much we can glean from reading stories and watching Obama go head to head with a handful of individuals.

What’s needed is a dialogue between all the major stakeholders that is mediated by data (from all stakeholders). Data we offer up about our own particular circumstances, matched by data from insurers, data from healthcare providers (hospitals and doctors) and data from the government.

Again, we

But also how is this plan going to change healthcare for everybody. Believe it or not, we *can* be goaded into making sacrifices for the greater good, provided we can be convinced that greater good will come of our sacrifices and our sacrifices are the only thing standing in the way of greater good. In other words, everyone wants the best for society. We just don’t want to be the only ones who get screwed along the way.

NYT / CBS Poll

Is this really the most imaginative way we (the electorate) can think of to get in on the debate on healthcare in Washington?

Sometimes I wonder if the questions pollsters ask actively make things worse because they reinforce the vague feelings of fear people have about change.

Are you concerned that a government plan will take away your ability to choose your own doctor?

Are you concerned healthcare reform will increase your personal healthcare costs and up your taxes as well?

Of course I’m concerned! Who wouldn’t be?

Why are we surprised by such concerns (aka fears)? Isn’t “fear of change” intrinsic to the human condition? Who’s really going to come out and say that they’re confident that any plan is actually going to work? (It makes me wonder if these polls are really more useful for understanding who’s optimistic and who’s pessimistic than anything else.)

Still, this kind of polling is useful for helping Washington identify what fears to address (or play up). But it isn’t particularly useful for figuring out how to address those fears.

What’s needed is a way to connect the dots from our individual situations to the wonky plans and provisions floating around Congress. A way for us (individuals) to engage in a conversation with legislators that builds and evolves as old issues are resolved and new issues arise.

Thus far, attempts to connect with the electorate have primarily consisted of polls, story forums and town hall meetings. But as I explained here and here, there’s only so much we can glean from reading stories and watching Obama go head to head with a handful of individuals.

Instead, what if we could participate in a dialogue mediated by data?

Data that gives each of us a picture of what our situation is today versus what our situation will be post-reform. (Where “our situation” includes both our individual circumstances and our fate as a society. And “situation” means numbers that are specific to us, not averages that aren’t actually relevant to anyone.) Generalized reassurances from politicians aren’t enough!

Come to think of it, isn’t this the kind of basic transparency into government we should be demanding of our elected representatives?

What would we need to have such a dialogue? We, the people, need to offer up data about ourselves. But insurers, healthcare providers (hospitals, clinics, doctors) and the government would have to do the same.

We understand that “data” is too often cited as as an ambiguous cure-all. So to be more specific, we think something like our demonstration online data collection forum would’ve been a modest, but potentially more meaningful way for the “public” to reach out to legislators.

Tags: Healthcare For Everyone
Posted in Best Practices, Interesting Uses of Data, Public Policy | No Comments »

NYC Big Apps Competition Brainstorm

Thursday, July 30th, 2009

1. Most Persistent Theme: My Neighborhood

- What *do* people consider their neighborhood?

- What services do they use in their neighborhood?

- What’s lacking in their neighborhood?

- What’s aggravating people in their neighborhood? (Complaints, violations, crime.)

2. “Real-time” experience of data.

- What’s around me right now?

- How are my tax dollars being spent, right here?

- Optimize my biking / subway route given conditions right now.

3. Maps are cool.

4. Crossing data sets is cool.

- ER wait times with crime blotter?

- Local immunization with school attendance records?

- Congestion maps with air quality monitors?

5. Design the application around the assumption that the city data is going to be incomplete and use that as an opportunity to invite individuals to contribute data to help fill in the gaps.

WE ALSO ENDED UP WITH SOME GREAT QUESTIONS TO ASK OF THE CITY.

Here’s the beginning of our list. Please feel free to add more.

1. Will there be a “guide” of sorts for what data is available? What data has already been released? What data hasn’t been released, but could be released? (For the competition, will there be a point person for answering questions related to releasing data?) What data is most up-to-date and complete?

2. What are the boundaries for what data is and isn’t available? What about data that crosses city boundaries? e.g. MTA data (MTA). Hospital data (NY State).

3. How “raw” will the data be? (Unprocessed database files? Summary reports?)

4. What are the city’s privacy standards for releasing data?

- How will you ensure that individual identities won’t be revealed, even if city data is cross-referenced with other data sets.

- Many public records include individual identities and addresses. In a world where collating public records about any given individual across city agencies and the public domain was time-consuming and difficult, this was not a privacy issue. However, given the ease with which such a task is done today, how will the city protect individuals from having “complete” profiles of their lives assembled and made available online for public scrutiny?

NEXT STEPS

We will be submitting our questions to the city along with everybody else this Wednesday (22nd) and waiting with baited breath for answers on the morning of Friday (24th)

We have also decided to take the idea of “Subscribe to updates about the services I use in my neighborhood” and push it to the next level of design to see what road blocks we run into. It will also help us zero in on what data to request of the city in September. We still don’t know what we’ll actually end up submitting to the competition, but either way, we will learn much by pushing one idea to the next stage of development, even if we end up having to go back to the drawing board.

NYC announced that it too is holding a competition to build applications using (to-be-released) city data. We’re thinking of entering our own app. You can see some of the ideas that are floating around here.

As of yet, it is unclear what criteria will be used to judge the applications, but we decided to go ahead and hold a brainstorm session anyway with a handful of people “in-the-know” about city agencies and who make use of city data in their day-to-day work.

Here are the notes from our meet-up.

P1010001

Mind Map: Environmental Health

1. Most Persistent Theme: “My Neighborhood”

- What do people actually think of as “in their neighborhood?”

- What services do they use in their neighborhood?

- What’s lacking in their neighborhood?

- What’s aggravating people in their neighborhood? (Complaints, violations, crime.)

2. “Real-time” experience of data is cool.

- What’s around me right now?

- How are my tax dollars being spent, right here?

- Optimize my biking / subway route given conditions right now.

3. Maps are cool.

4. Crossing data sets is cool.

- ER wait times with crime blotter?

- Local immunization with school attendance records?

- Congestion maps with air quality monitors?

5. Design the application around the assumption that the city data is going to be incomplete; and use that as an opportunity to invite individuals to contribute data to help fill in the gaps.

WE ALSO CAME UP SOME GREAT QUESTIONS TO ASK OF THE CITY.

1. Will there be a “guide” of sorts for what data is available? What data has already been released? What data hasn’t been released, but could be released? (For the competition, will there be a point person for answering questions related to releasing data?) What data is most up-to-date and complete?

2. What are the boundaries for what data is and isn’t available? What about data that crosses city boundaries? e.g. MTA data (MTA). Hospital data (NY State).

3. How “raw” will the data be? (Unprocessed database files? Summary reports?)

4. What are the city’s privacy standards for releasing data?

- How will you ensure that individual identities won’t be revealed, even if city data is cross-referenced with other data sets.

NEXT STEPS

We have submitted our questions to NYCDataRFEI@nycedc.com, but got a “server rejected your message” error email in response. We called and left a message but haven’t heard back. Answers, which were promised for Friday Jul 24th, have yet to be posted to their website.

Tags: NYC Big Apps
Posted in CDP Announcements, Interesting Uses of Data, Public Policy | 1 Comment »

Healthcare For Everyone: Stories versus Data

Friday, July 24th, 2009

In my last post announcing our demo site “Healthcare for Everyone: An online data collection forum,” I talked about how “hard data is especially important when there is a profound disagreement over the nature of a problem.”

You might ask, don’t we have lots of hard data already? Certainly pundits and politicians alike are quoting a lot of statistics these day.

$46 million uninsured

$15,000 per capita per year on insurance, $6500 more than other rich nations

Still, these numbers are failing us. Why?

Because they fail to paint a picture that let’s us see the people behind these numbers. (Let’s ignore accuracy for now.)

They are Coarse Aggregates (46MM uninsured) and Banal Averages ($15,000). They are relevant to everyone and as a result, they are relevant to no one.

Who are these uninsured? What are their circumstances? Are they old or young? Poor or rich? Men or women? Parents? Single parents? Immigrants? Urban? Educated? How many “chose” to be uninsured? How many were rejected for coverage?

Who’s spending $15,000? Do they have pre-existing conditions? Is it out of pocket? Or are their employers footing the bill?

On the flip side, there are also a lot of people sharing their personal healthcare horror stories online. Here are just a few places where it’s happening

http://healthcareforamericanow.org/site/your_stories/P1220/
http://standupforhealthcare.org/page/s/story
http://stories.barackobama.com/healthcare/

http://ehealthforum.com/health/health_insurance.html
http://answers.yahoo.com/dir/index?link=list&sid=396545321
http://forums.about.com/n/pfx/forum.aspx?webtag=ab-healthins
http://christianscience.com/forums/showthread.php?t=176
http://www.topix.com/forum/health/health-insurance

Yet, in their own way, these stories are also somehow not enough. Who are the people behind the posts? Not literally “Who are they?” as in “What are their actual identities?” But what are the specifics of their situation? Are they like me? How common are their experiences?

So it was gratifying to find these 2 forums on fertility and cancer, because hard data about each contributor contextualizes every post. (An outsider might find it difficult to understand what’s going on, but clearly a wealth of data is being offered up and consumed by those who frequent these forums.)

Still, even these data-rich posts leave me wishing for some way to see in toto: “Who’s in the forum?” and “What are they grappling with?”

Without some such aggregated “picture” of what’s being shared in these forums, how do any of us begin to see the sum and significance of all these stories?

We don’t pretend that our little demo site is going to paint the picture of what’s going on with healthcare in the U.S.

But for those who chose to contribute their data, we think our approach already does a better job of painting a picture of their healthcare situation (individually and as a group) than the forums and healthcare data reports we’ve seen so far.

Tags: Healthcare For Everyone
Posted in Best Practices, Interesting Uses of Data, Public Policy | No Comments »

Healthcare Stories (and Data) for America

Wednesday, July 22nd, 2009

As part of our work, we’re experimenting with ways to motivate people to donate data about themselves, either to further a cause they believe in or simply to better understand their situation relative to others. We’ve built a demo site around the issue of healthcare and would love for you to try it out give us some feedback!

Of course, we’re not the first people to have a go at organizing people around healthcare online. The Obama administration’s recently launched Healthcare Stories for America is particularly well-done, with an interactive map and community-driven mechanism for highlighting especially interesting contributions.

Still, we wonder if we shouldn’t take it up a level.

Our belief is that to make a compelling case for any issue, especially one as complex and multi-faceted as healthcare, you need both:

Real stories to humanize the problem; and
Hard data to contextualize those stories and provide handles for understanding the size and shape of the problem.

It is no accident that the interactive map is most prominent way to browse “Healthcare Stories for America.” We think there should be even more “data-driven” ways to soak up what people are contributing. Far from being a turn-off, we believe that asking people to give more data can make community forums more compelling and more engaging, provided people understand what they’re giving up, who they’re giving it up to, how it will be used and see an immediate pay-off for themselves.

The basic assumption of the site is simple: Give data. Get more data.

The visualization below is a static example graph of how we imagine more “data-driven” ways to consume and make sense of the kind of information people are sharing on forums like “Healthcare Stories.” See full-sized graph here.

Hard data is also especially important when there is profound disagreement over the nature of a problem. This is the the drama that is playing out in Washington right now over healthcare. Hard-won, at times grudging agreement that reform is necessary counteracted by entrenched disagreement over exactly what the problem is and how it should be addressed.

So please take a look at what we’ve done. Browse around. Contribute your story. Our privacy guarantee is simple. Either you choose to make your information public, or you don’t. If you don’t, we will never release your data except in aggregate form, like this and this.

Let us know, what’s compelling to you? What’s not? What would you like to see more of? less of? What questions do you have about how the site works? Feel free to post your comments and questions here or email us directly at info [at] commondataproject [dot] org.

Tags: Healthcare For Everyone
Posted in Best Practices, CDP Announcements, Interesting Uses of Data, Public Policy | No Comments »

The politics of being counted

Monday, July 13th, 2009

The 2010 U.S. Census has been in the news a lot lately.

A national association of Latino clergy recently announced a campaign to persuade a million of its members to boycott the 2010 U.S. Census. They hope their boycott puts pressure on the federal government to pass legalization legislation, but they also claim that they don’t want federal money allocated and used to harass illegal immigrants.

Republican Representative Michele Bachmann of Minnesota also announced she and her family will be boycotting the census. In her case, she’s refusing to answer questions because she thinks it’s outrageous that the government wants to know how long it takes you to get to work, and that ACORN, along with many other organizations and businesses, is involved in helping to carry out the 2010 census. Also, she’s angry that the census doesn’t ask you if you’re a U.S. citizen. (Which isn’t quite right. It does ask you if you’re a U.S. citizen; it doesn’t ask you if you have legal status or not.)

In contrast, one group got their wish to be counted. The Census Bureau recently announced the 2010 U.S. Census will release data on same-sex marriage. Data on same-sex marriages has been collected for a long time, but the last administration interpreted the Defense of Marriage Act as prohibiting the release of that data. The initial plans for the 2010 census were to “edit” the responses to recategorize same-sex marriages as “unmarried partners.” In 1990, the bureau simply changed the gender of one person. So the new policy means responses will be accepted as they are.

Some people want to be counted. Some people don’t.

I’m firmly in the “count me” camp.

As Republican Representatives Patrick McHenry, Lynne Westmoreland and John Mica pointed out to Rep. Bachmann, refusing to respond to the Census is “illogical, illegal, and not in the best interest of our country.” The League of United Latin American citizens, in contrast to the Latino clergy group, is participating in a coalition of media, community groups, labor unions, and churches to urge participation in the census. Clearly, being on the same side of the political spectrum or sharing a specific policy agenda doesn’t mean you’ll agree about the census.

It’s not that numbers are apolitical. The Census determines how apportion federal funds and representatives for the House. The LA Times article cites a study that argues the illegal population in California led to California gaining 3 seats in the House of Representatives, while Indiana, Mississippi, and Michigan to lose seats. It’s all about power, which means it’s all about politics.

But political debates shouldn’t be about whether or not to be counted. Debates should be about whether certain proposals will do what they claim, or even about whether the numbers are accurate. To refuse to be counted altogether, when the numbers will determine so much? It’s like refusing to vote.

Tags: census, Politics
Posted in Interesting Uses of Data, Public Policy | No Comments »

Who gets hurt when information is withheld?

Tuesday, June 30th, 2009

Whenever people talk about why information matters, it’s easy to throw around abstract formulations about transparency and the free flow of information. I do it all the time. But this story from the Columbus Dispatch on how universities around the country are using a federal law on student privacy to withhold information has some great concrete examples of why disclosure is so important, and why not disclosing isn’t actually protecting anyone’s privacy

Basic background: FERPA or the Family Educational and Rights Privacy Act generally prohibits schools from disclosing students’ “education records” without written permission from the student (if 18 and older) or the student’s parent. But interpretations of FERPA vary widely from school to school.

The Columbus Dispatch discovered that many schools cite FERPA as a reason to withhold documents that arguably don’t fit into the definition of an “education record.” In response to the Dispatch’s requests, FERPA was cited as a reason not to disclose reports of NCAA violations, lists of people designated to receive athletes’ complimentary admission to football games, and football players’ summer employment documents. Without such records, it is “virtually impossible to decipher what is going on inside a $5 billion college-sports world that is funded by fans, donors, alumni, television networks and, at most schools, taxpayers.”

The article didn’t just ask you to be shocked and horrified on principle that the university was keeping secrets. It told you exactly who is being hurt and in what ways:

1. Other students and the public. In addition to potential misuse of taxpayer funds, “some universities are covering up criminal behavior in the name of student privacy.”

2. The athletes themselves.

When news that a quarterback at OSU had accepted $500 from a booster went public, the Columbus lawyer and Ohio State fan was “swamped with e-mails from current or former collegiate athletes across the country.”

“They all were saying thank you, that it was out of hand at their school, too,” Webster said.

Before giving money to Smith, booster Robert Q. Baker had tripped up at least two other Ohio State football players. But those problems didn’t become public until after the Smith incident.

If not for Webster’s intervention, it’s impossible to know how many other players might have been approached by Baker, now banned by Ohio State from his luxury suite at Ohio Stadium. Baker was not banned until after public disclosure of the facts.

And ultimately, the universities are hurting

3. The schools themselves and their athletic programs.

All of those schools deleted names and many details of such violations from public records.

Those violations resulted in financial losses, damaged reputations and, in some cases, forfeiture of athletic victories.

The Final Four banners were removed from Ohio State’s Value City Arena because of NCAA rule-breaking. That violation involved former men’s basketball coach Jim O’Brien’s gift of money to a potential recruit and illegal benefits and academic help given to another player. Those violations cost the school more than $1.3 million in legal fees and NCAA penalties.

Florida State currently is spending about $200,000 to appeal one sanction of its numerous NCAA penalties in the cheating scandal. It is trying to preserve football victories so that Bobby Bowden might retire as the winningest football coach in college history.

The story illustrates a difficult but really important truth about information and disclosure. In the end, we’re all better off when we have more information, even those of us who think we have something to lose. This might not be true all the time, but it’s true most of the time. People who think they’re protecting their own interests by withholding information are often taking a rather dim, short-term view of their situation. And certainly, “privacy” isn’t what gets protected in the end.

Tags: education, Privacy, sports, universities
Posted in Protecting Privacy in Meaningful Ways, Public Policy | No Comments »