Posts Tagged ‘Patients Like Me’

Yay, it’s Data Privacy Day!

Thursday, January 28th, 2010

As sponsored by, among others, Google, Microsoft, Lexis-Nexis, and AT&T.

Lexis-Nexis, for those of you who are not lawyers and journalists, is an amazing tool for doing research on court decsions, regulations, statutes, and other legal matters.  It is also a great way to investigate people, comb through property records, and more!  In a way, though, the information it stores is pretty private, at least to the extent that it’s so expensive to access, it’s not available to the vast majority of people.  Which makes me wonder, how much is Lexis-Nexis worried that its product is becoming less valuable because more and more of their information is available elsewhere for free?

Which leads me to the crux of the problem.  Privacy, a word for which very few people can agree on a definition, is nevertheless a real issue these days.  But the reason it’s become such a pressing concern isn’t only because surveillance technology has gotten better or more pervasive.  It’s also because more information is available everywhere.  Re-identification from supposedly anonymized databases wouldn’t be so easy if other data sources, like DMV records, weren’t so readily available.  In addition, the Internet is teeming with information we want to provide ourselves, through Facebook, PatientsLikeMe,, which we do not just because we’re exhibitionists, but because we get value from sharing that information and seeing what others have shared as well.

We want privacy.  We want information.  How are we going to reconcile these two very legitimate desires?  Will there be trade-offs?  Can we really have it all?

We’re definitely not in the camp of “We’ll never have privacy, let’s throw out the data!”, nor the camp of “Privacy’s gone anyway.”  So yes, we do think we can have a lot, if not “all.”  And to do that, we need to move beyond talking about privacy and information in the abstract.  We need to look at specific areas — like electronic health records, campaign finance, government transparency — and be concrete about what we lose and what we gain with every decision we make.

Data Privacy Day may be “an international celebration of the dignity of the individual expressed through personal information,” but let’s be honest.  Dealing with these questions will be interesting, but it isn’t going to be a party.

“Data” as a mainstream consumer good? 2 approaches.

Wednesday, April 2nd, 2008

Two examples of “data” becoming a mainstream consumer good.

1. Youtube launches video stats

Google Analytics for YoutubeOstensibly, the service is aimed at the “general public” uploading videos.

“Insight gives the creators an inside look into the viewing trends of their videos on YouTube, and helps them to increase views and become more popular,” said YouTube Product Manager Tracy Chan.

But of course, such a tool is useful to advertisers as well.

“Partners can evaluate metrics to better serve and understand their audiences, as well as increase ad revenue. And advertisers can study their metrics and successes to tailor their marketing — both on and off the site — and reach the right viewers.”

2. More exciting is Patients Like

PLM is a web service that provides treatment data for diseases like Parkinson’s disease, multiple sclerosis, and AIDS, collected from individuals.ALSFRS-R Progression of Patients on LithiumFrom the recent NYT Magazine profile:

…PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.

Why is this interesting? Well, instead of establishing a parasitic relationship between the web service and their users where the service more or less “spies” on their users, and then makes money off of the the data they collect by selling it to advertisers, PatientsLikeMe sets up individuals and web services in a symbiotic relationship where the user has a stake in the data because the user is the one that gets value out of the aggregates. This is not only more sustainable from a PR perspective, but also from a data quality perspective. If you’re trying to understand how your personal treatment profile stacks up against others; the more detailed and accurate your information is, the more you get out of the service, the more valuable the service is to you and to others.With Youtube, Google is still playing cat and mouse with their users, hoping they won’t notice or care about the data that’s being collected and sold.  PatientsLikeMe on the other hand, is part of an emerging crop of web services (Freshbooks and Wesabe to name 2 in the finance genre) that build a symbiotic relationship with their users. Of this new breed of data-driven services,  PatientsLikeMe is perhaps the most ground-breaking because the user’s relationship to the service is (for a change) just so obvious:

The community as a whole succeeds or fails on the individual contributions of its members.

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