Stand up and be counted!

September 11th, 2008 by Mimi Yin

Just to quote a different news source:

John McCain’s choice of Alaska Governor Sarah Palin as his running mate is sitting very well with a lot of American voters, according to the latest FOX News poll.

The new survey also shows that—among all four candidates running—Palin (at 33 percent) is seen as most likely to understand “the problems of everyday life”—barely outpacing Barack Obama (32 percent), and finishing significantly ahead of both McCain (17 percent) and Joe Biden (10 percent).

Among independent voters, Palin’s lead over Obama on this score widens to 13 points (35 percent to 22 percent).

Fox also provides a link to the “raw data”. (Don’t get too excited.)

Apparently, raw data means a list of the questions asked, broken down by party (Republican, Democrat and Independents, over time.)

Raw data doesn’t include: Who are these people being polled? How did they get so lucky as to be selected to represent the viewpoints of their fellow voting Americans?

I’m not going to get into the validity of political polling here – we have explored poll validity at some length before. (e.g. Polls are conducted entirely through land lines, excluding the 15% of Americans that only have a cellphone number.) Frankly I don’t know enough to say anything useful about them, other than to express the usual lay person skepticism about such things.

Instead, I think a far more interesting question the recent flurry of political polling highlights is how such surveys or any “data collection effort for that matter affects the people who choose not to participate or are never selected to participate in such polls. Most of us breath a sigh of relief when we dodge a telemarketer who wants to spend “a quick 10 minutes” with us on the phone to answer a “simple survey”. But what are we passing up by not participating when so much decision-making is data-driven?

A missed questionnaire about cleaning products is nothing to fret about? But about declining to hand over personal medical data to the doctors, nurses (not to mention hospitals, researchers and insurance companies) we depend on to treat our ailments and prevent future problems?

To cite yet another poll to back up my point about polls 😉

“According to a recent poll, one in six adults (17%) – representing 38 million persons – say they withhold information from their health providers due to worries about how the medical data might be disclosed.

Persons who report that they are in fair or poor health and racial and ethnic minorities report even higher levels of concern about the privacy of their personal medical records and are more likely than average to practice privacy-protective behaviors.”

Harris Interactive Poll #27, March 2007.

More info on the poll here.

Case in point: Back in April, I wrote about the site, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool of invaluable information that is publicly available. However, I also wonder about how their data may be skewed because their users are limited to the pool of people who are comfortable sharing their HIV status and publicly charting their daily bowel movements. The question we have for PatientsLikeMe is: Who isn’t being represented in your data set? And how does that affect the relevance of your data to the average person who comes to your site looking for information? Who won’t find your data helpful because it’s not relevant to their personal situation?

Increasingly, companies, agencies at all levels of government, researchers who advise policy-makers and even individuals are making “data-driven” decisions.

Yet, how often do we dismiss a study by scoffing at the limited range of its participants?

So what do we do? Tell everyone Privacy is soo 20th century. The new millenium is all about self-exposure.

How we resurrect the notion of privacy in a world that can no longer depend on a closed door to protect us against invasions, is a question we must find answers to. However the the solution is not to keep people away from sharing personal data. Doing so means giving up our place at the discussion table when it comes to influencing decisions as mundane as “How reliable does cellphone reception need to be?” to life or death decisions such as “How many ambulances does my local hospital need?”, “What combination of therapies will work best for my condition?”

To state my case more strongly: Participating as a data point in data-driven research is a passive form of voting, the most basic of rights in a functioning democracy.

To be sure, this is an idealistic take on data collection. There remains the much thornier issue of how to ensure that data is used for mutual benefit not monitoring or predatory manipulation. (Factory workers being watched by union bosses at the voting booth faced similar challenges.)

However, to repeat our favorite mantra: The enemy isn’t the data!

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2 Responses to “Stand up and be counted!”

  1. […] see who cares the most, or maybe more accurately, has the most time on his hands.)  As Mimi stated earlier, choosing to participate in polls, surveys, and studies that shape our world and our lives is […]

  2. […] Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about […]

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