Declaration of Health Data Rights: Aux Barricades!

And so it has come to this: A declaration of human rights about . . .health information technology.

A group of thinkers, leaders and potentates in the patient-centric wing of the Health 2.0 movement, gathered under the banner HealthDataRights.org, has hammered out the following declaration:

Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:

• Have the right to their own health data.
• Have the right to know the source of each health data element.
• Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost.  If data exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
• Have the right to share their health data with others as they see fit.

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

[Interest declared: I know a lot of these folks from the Health2.0 world, and was approached to endorse the statement and to blog about it at 9:00 p.m. on the 22nd day of June in the year of our lord 2009. I agreed because, well, I agree.]

This is important and timely stuff.

At a moment when vast amounts of federal cash are being spent on Health IT [HIT] in service of health care reform, it’s important to have the interests of patients plainly and publicly declared.

Why?

The most visible and active “stakeholders” in discussions about HIT so far have been–stop me if you’ve heard this one before–commercially self-interested players who may not [or, to be fair, may] have patient rights regarding what happens with the “I” part of HIT top-of-mind.

These HIT stakeholders include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

They all have the usual “access” to the the HIT policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

And so yes, it’s essential to ensure patients are represented in the midst of all this–and to declare patients have access to, knowledge about and [some] control over their personal health information.

And, if necessary, to call the People to arms to demand it.

Though I think they use Twitter for that these days.

#Neda, Still Outside the Mainstream

It may appear that #Neda–the young woman whose death on the streets of Tehran was captured on a staggering amateur video–has “gone mainstream.”

Which is to say, that Big Media has recognized the role the image may be playing in driving political opinion, and is exploring it as a way to interpret the continuing protests and political activities. [I blogged on this topic yesterday.]

But no.

Where credit is due: Last night CNN repeatedly ran a version of the 37-second video, with proper warnings about its graphic content. The hosts and guests talked about the video’s potential–and apparent–role in galvanizing the protest movement both inside and outside Iran.

The fact that it has done so is beyond dispute.

But CNN stands nearly alone among U.S. mainstream media in its acknowledgment of the role the Neda video is playing in Tehran.

To check this out, I did on-site searches of three major print-heritage MSM news sites. Here’s what I found, as of 3:30 Monday, June 22 [links below are to stored searches]:

WashingtonPost.com

Stories from AP, Reuters and a single homegrown reference: An online discussion by a non-staffer

NYTimes.com

Three references in The Lede news blog, and reference deep in one print article, which says that the authenticity of the video cannot be verified [of which more in a moment]

USAToday.com

Two blog entries, plus wire stories

Let’s open up the search. Here’s what Google News tosses up on a search for “Neda”: 332 results!

But wait, there’s less.

Dig into those results and you’ll see:

• The New York Daily News appears to be alone among U.S. newspapers in offering original Neda reporting in print by its staff. The Kansas City Star and the L.A. Times have blogged on it.
• Among non-daily MSM, Time’s Robin Wright features a print article that uses Neda as a jumping off point to put the current events in historical context
• Otherwise the content comes mostly from ABC news, CNN and FoxNews, which for the most part used the Neda video as a compelling “actuality” to show over the latest news updates.
• Around the world, big media is paying more attention: the BBC and other UK outlets, some local TV stations’ websites, and wire stories from AP, Reuters and AFP.

The journalists most actively discussing the Neda phenomenon? Indie bloggers.

So why the mainstream media prudery?

It could be that, yes, the video is a fraud. I think this a very remote possibility, almost paranoid in its nature. One look at the video makes this quite clear. [One commenter on my blog entry yesterday makes this case--he suspects a "blood packet" has been applied to Neda's face--and many others are doing so around the web.]

The world is a strange and terrible place, and [as a former Washington Post newsroom employee] I am enough of a trained skeptic to see that it’s foolish to rule out the possibility entirely.

It can also be argued that the MSM should exercise its often-valuable caution and care in its reports–especially as new details about Neda’s life and images of her beautiful face emerge from obscure,  unfamiliar sources and are being used to serve the protesters’ political ends. In this view, the MSM is the prudent counterweight to the flighty speculations of the social web, refusing to fall into the hands of the revolutionaries’ spinning.

But as I argued yesterday, I suspect it’s less about that than it is about the MSM’s unwillingness to acknowledge [accept? understand?] its increasingly marginalized role in a fast-moving news environment where real-time global information sharing without MSM approval is the rule, not the exception.

I believe that a lot of the media’s “Well, we’re really not sure” chin-pulling is an affected, self-infatuated dodge–a way to avoid of the larger, paralyzing question:

What, exactly, should the mainstream media should do when a story develops so far beyond its control–or understanding?

n.b. Over at the journalism site Poynter.org, Bill Mitchell explains some of the challenges the Neda video creates for traditionally trained journalists.

#Neda and the Power of the Viral Image

The 37-second amateur video that shows, in vivid and horrifying detail, a young woman named Neda dying of a gunshot wound on the streets of Tehran, has the capacity to change the political dynamic in Iran. It may already have done so.

I will not link to the video here. The decision to watch it should be made carefully, knowing it is sickening and likely to remain with you for the rest of your life. You can easily find it if you want.

I found it nearly overwhelming. I had to step away from the computer and gather myself. Afterward when describing it to my wife my voice was shaking and I couldn’t quite formulate my thoughts.

The morning after viewing it I can say this: I believe that 37 second clip can transform global opinion.

I liken it to the 1972 photograph of the young Vietnamese girl running naked through the streets, her skin seared by the chemical burn of napalm. Or the 1963 picture of police dogs attacking civil rights protesters in Birmingham, Alabama. Both, it is argued, played a key role in galvanizing public opinion on the political issues they represented.

For me, and I suspect many who view it, the Neda video says with absolute clarity: The violent crackdown on street protesters in Tehran must not stand. The perpetrators must be stopped or removed.

It removes any ambivalence or subtlety one might have about the situation there.

Last night I was actually wondering how a government responsible for Neda’s death–in an environment where cheap, instant, global, many-to-many communications has brought the phrase “the whole world is watching” closer to literal fact than it was in the 1960s–can possibly remain in power.

In the cool light of morning I realize that was dramatic hyperbole, heavily colored by emotion.

But still: That 37-second video has already become a singular, powerful fact driving  global opinion. Its impact will only accelerate and expand. It will have consequences.

Let me also predict that the mainstream media is going to miss the import of that video. Partly because they dare not show it, and thus it will not become part of their newsrooms’ collective consciousness–or conscience.

But also because they still tend to view amateur, viral “reporting” as marginal “bonus” material, incapable of driving public thought in the way their own professional reporting and opinionating can.

There is a #Neda hashtag on Twitter. It captures conversations about and inspired by the video.

Yet it is now being added as a hashtag to general Twitterizing on the election protests, as an  expression of commitment at least as powerful as the green avatars that hover like nauseated witnesses over the 140-character global thoughtstream.

Much is made about Twitter and its limited ability to drive change.

This isn’t about that.

It’s about the power of a single, brief incident captured on video–in an  environment where people share what moves them instantly with a global audience, without the assistance or approval of governments, media or any institution—to change others’ minds.

Change the world?

In the cool light of morning, I realize that’s foolish too.

But if you are feeling strong and brave and willing to have a horrifying image seared into your brain, view the video.

It will change you.

TripAdvisor.com and the Wisdom of the Clowns

TripAdvisor.com, the aggregator of travelers’ opinions about hotels, resorts and such, has been posting the following warning on some hotel profiles.

This is an encouraging move.

Most people who have contributed or used web reviews of hotels, restaurants and books can smell a rat–or at least suspect one is usually around.

Wisdom-of-the-crowds opinion aggregators are laughably simple to game. How many e-mails have you received from your favorite restaurants begging for a vote in the annual “Best Of” web poll?

As this issue has circulated through the online travel sphere, things have heated up. In response to a few broader challenges to Trip Advisor’s overall integrity, the company’s chief Twitteur, April Robb, issued the following statement, which appeared on the blog Elliot.org:

We believe our nearly 25 million reviews and opinions are authentic, honest and unbiased, from real travelers, which is why we enjoy tremendous user loyalty. Also, the sheer volume of reviews we have for an individual property allows travelers to base their decisions on the opinions of many.

The integrity of TripAdvisor reviews is protected by three primary methods:

1. Every review is screened prior to posting and a team of quality assurance specialists investigate suspicious reviews

2. Proprietary automated tools help identify attempts to subvert the system

3. Our large and passionate community of more than 25 million monthly visitors help screen our content and report suspicious activity

When a review is suspected to be fraudulent, it is immediately taken down and we have measures to penalize businesses for attempts to game the system. Penalties are handled on a case by case basis.

Well, it’s hard not to smell a rat there too. “Every” review is pre-screened and a team of QA specialists “investigate”s suspicious reviews?

That’s a hell of a workload. Assume it takes 15 seconds to eyeball each of the 25 million reviews Trip Advisor says it has. This means that its screeners have spent. . .let’s see…4,340 around-the-clock days, or about 12 years of constant labor, vetting reviews since the site launched.

And that’s before the QA specialists step in to investigate the suspicious ones!

Even if this work is being done in Sri Lanka, that’s still a pretty high “contractor expense” in the ol’ budget.

You can read an excellent report on the Trip Advisor controversy at Elliot.org, the best-of-breed blog by online travel journalist Chris Elliot.

Also check out the 43 comments on his entry. It’s hard to tell without a dedicated team of QA specialists, but damn, I think I smell a rat there too.

It looks to me like several of the comments defending Trip Advisor’s integrity come from. . .wait for it. . .people with some undisclosed relationship with Trip Advisor.

Digital News Innovation from. . .the Washington Post!

Enthusiasts of innovative ways to present news in web-native formats should check out the Innovations in News blog from…The Washington Post.

Regular readers of this blog [both of you!] may be surprised to hear this. I’m a regular reader myself, and nobody is more surprised than I.

Having issued a blistering broadside against the Post‘s [my former employer's] inept lunge at web-native storytelling last week, I had no idea that the Post was quietly accumulating some good digital news projects and aggregating them in a blog. It’s been published since mid-April.

Here’s the most news-oriented project of the items of the bunch, a wonderful D.C. Budget Game. It’s an interactive response to the old “You don’t like the budget cuts? You give it a try” dare.

In truth, aside from this, there’s little groundbreaking work here yet–most of the five features on the blog are soft efforts, of the cool-stuff-apropos-of-nothing variety, not journalistic responses to the news. The Post still badly trails the New York Times in innovative use of digital media to commit acts of journalism.

Still, it’s a sign of digital  life. And worth keeping an eye on.

n.b. Nobody at the Post turned me on to this. It’s not a “make-good” blog entry to try to curry favor with my former employer. It’s safe to say that that favor is beyond curry.

One Picture is Worth 1,000 Tweets

I tried to follow the Twit-stream coming out of the 140 Characters Conference in New York. I really did.

As you might imagine, though, a high-profile conference about Twitter attended by enthusiastic Twitterers hell-bent on ventilating their thoughts about Twitter via Twitter produces quite a bit of digital output.

Following the #140conf hashtag was like drinking Kool-Aid through a firehose.

Which is why [through a Tweet!] I was delighted to discover these images of conference presentations produced by attendee Jonny Goldstein.

Like courtroom sketches, the images capture the vibe in the room. They even convey some of the content quite elegantly.

Huh: I wonder Goldstein has a business model?

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