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August 24 2012

The Direct Project has teeth, but it needs pseudonymity

Yesterday, Meaningful Use Stage 2 was released.

You can read the final rule here and you can read the announcement here.

As we read and parse the 900 or so pages of government-issued goodness, you can expect lots of commentary and discussion. Geek Doctor  already has a summary and Motorcycle Guy can be expected to help us all parse the various health IT standards that have been newly blessed. Expect Brian Ahier to also be worth reading over the next couple of days.

I just wanted to highlight one thing about the newly released rules. As suspected, the actual use of the Direct Project will be a requirement. That means certified electronic health record (EHR) systems will have to implement it, and doctors and hospitals will have to exchange data with it. Awesome.

More importantly, this will be the first health IT interoperability standard with teeth. The National Institute of Standards and Technology (NIST) will be setting up an interoperability test server. It will not be enough to say that you support Direct. People will have to prove it. I love it. This has been the problem with Health Level 7 et al for years. No central standard for testing always means an unreliable and weak standard. Make no mistake, this is a critical and important move from the Office of the National Coordinator for Health Information Technology (ONC).

(Have I mentioned that I love that Farzad Mostashari — our current ONC — uses Twitter? I also love that he has a sense of humor!)

Now we just need to make sure that patient pseudonymity is supported on the Directed Exchange network. To do otherwise is to force patients to trust the whole network rather than to merely trust their own doctors. I have already made that case, but it is really nice to see both Arien Malec (founding coordinator of the Direct Project) and Sean Nolan (chief architect at Microsoft HealthVault) have weighed in with similar thoughts. Malec wrote a  lovely piece that details how to translate patient pseudonymity into NIST assurance levels. Nolan talked about how difficult it would be for HealthVault to have to do identity proofing on patients.

In order to emphasize my point in a more public way, I have beat everyone to the punch and registered the account of DaffyDuck@direct.healthvault.com. Everyone seems to think this is just the kind of madness that we need to avoid. But this is just the kind of madness that patients need to really protect their privacy.

Here’s an example. Lets imagine that I am a pain patient and I am seeking treatment from a pain specialist named Dr. John Doe who works at Pain No More clinic. His Direct address might be john.doe@direct.painnomore.com

Now if I provide DaffyDuck@direct.healthvault.com to Dr. Doe and Dr. Doe can be sure that he is always talking to me when he communicates with that address, then there is nothing else that needs to happen here. There never needs to be a formal cryptographic association between DaffyDuck@direct.healthvault.com and Fred Trotter. I know that there is a connection and my doctor knows that there is a connection and those are the only people that need to know.

If any cryptographic or otherwise published association were to exist, then anyone who had access to my public certifications and/or knew of communication between john.doe@direct.painnomore.com and DaffyDuck@direct.healthvault.com could make a pretty good guess about my health care status. I am not actually interested in trusting the Directed Exchange network. I am interested in trusting through the Directed Exchange network. Pseudonymity gives both me and my doctor that privilege. If a patient wants to give a different Direct email address to every doctor they work with, they should have that option.

This is a critical patient privacy feature of the Direct protocol and it was designed in from the beginning. It is critical that later policy makers not screw this up.

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Related:

February 10 2012

Preview of HIMSS 2012

I am very happy to be attending the Healthcare Information and Management Systems Society (HIMSS) conference this year. We are at a pivotal moment in the history of healthcare in this country and health IT is playing a very prominent role. This will be one of the most important healthcare conferences of the year. If you can't make it to Las Vegas in person, there are opportunities to attend virtually. Just go to himssvirtual.org for more information.

I will be moderating panel presentations at the HIMSS Social Media Center on Tuesday and Wednesday. This year I expect social media to play a much larger presence in the conference, and the new location for the pavilion will put it front and center. Since the keynote this year is from one of the founders of Twitter, Biz Stone, I'm sure there will be a social media flavor throughout the event.

I will also be participating in the brand new eCollaboration Forum at HIMSS on Thursday. The Collaborative Health Consortium has partnered with HIMSS to sponsor a new, exclusive event focused on the shift to collaborative care platforms to take place at the conference. The event will focus on collaborative platforms as foundations for transformation to accountable care. Attendees will be able to learn what a collaborative healthcare platform is and why the healthcare industry needs it, discover paths to take to effectively implement collaborative technologies, and get further resources to help evaluate the solutions available in the shift toward an accountable care health model.

I am honored to be moderating a panel with David C. Kibbe, MD MBA, senior advisor at the American Academy of Family Physicians; Jonathan Hare, chairman of Resilient Network Systems; and Scott Rea, vice president GOV/EDU Relations and senior PKI Architect at DigiCert.

Our session, "Developing Trust in the Health Internet as a Platform," will focus on the tools, technologies and rules we must decide upon to establish trust in the Internet as the platform for healthcare. Effective health information exchange of any resource requires deep trust, following from the right architecture and the right rules. We will discuss efforts like DirectTrust.org and the EHR/HIE Interoperability Workgroup as conveners that are creating a community to move us forward.

My fellow Radar blogger Andy Oram will also be on hand to provide context and his own unique perspective (as well as keep me focused on what matters).

Related:

December 05 2011

The end of social

Listened to listMuch as I'm tempted to talk about Facebook privacy, I'm going to resist. Plenty has been written about Facebook and privacy, Facebook and "forced" sharing, Facebook and sharing by default, Facebook this and Facebook that. And I'm sure much more will be written about it.

Tim O'Reilly has been supportive of Facebook. The company has frequently been clumsy, but it's also been willing to push the limits of privacy in ways that might be potentially creative and in ways that might potentially create more value for us than we give up.

But none of the many reactions to Facebook get to the core of the problem, which isn't privacy at all. The real problem becomes visible when you look at it from the other direction. What effect does massive sharing have on the recipients? Let me ask the question in another way. Maybe I care if you see all the music I listen to; maybe I don't. Maybe I'm embarrassed if you find out that I mostly listen to dignified classical music but occasionally go slumming with Beyonce; maybe I'm not. But turn that around: while I might be interested in what you listen to, I have hundreds of Facebook friends; do I really care to be informed about what everyone is listening to? Do I really care to keep up with everything that they're reading? A little bit of information (cool, I didn't know that Bert Bates is a Dead Head) is interesting, but a deluge is The Big Snore.

The other day, I read a perceptive article, "In Defense of Friction," arguing that "automated trust systems undermine trust by incentivizing cooperation because of the fear of punishment rather than actual trust." That's a profound point. If we rely on computational systems for a trust framework, we actually lose our instincts and capacity for personal trust; even more, we cease to care about it. And there's a big difference between trusting someone and relying on a system that says they're trustworthy.

Taking this a couple of steps further, the article points out that, to many people, Facebook's "frictionless" sharing doesn't enhance sharing; it makes sharing meaningless. Let's go back to music: It is meaningful if I tell you that I really like the avant-garde music by Olivier Messiaen. It's also meaningful to confess that I sometimes relax by listening to Pink Floyd. But if this kind of communication is replaced by a constant pipeline of what's queued up in Spotify, it all becomes meaningless. There's no "sharing" at all. Frictionless sharing isn't better sharing; it's the absence of sharing. There's something about the friction, the need to work, the one-on-one contact, that makes the sharing real, not just some cyber phenomenon. If you want to tell me what you listen to, I care. But if it's just a feed in some social application that's constantly updated without your volition, why do I care? It's just another form of spam, particularly if I'm also receiving thousands of updates every day from hundreds of other friends.

So, what we're seeing isn't the expansion of our social network; it's the shrinking of what and who we care about. My Facebook feed is full of what friends are listening to, what friends are reading, etc. And frankly, I don't give a damn. I would care if they told me personally; I'd even care if they used a medium as semi-personal as Twitter. The effort required to tweet tells me that someone thought it was important. And I do care about that. I will care much less if Spotify and Rdio integrate with Twitter. I already don't care about the blizzard of automated tweets from FourSquare.

Automated sharing is giving Facebook a treasure-trove of data, regardless of whether anyone cares. And Facebook will certainly find ways to monetize that data. But the bigger question is whether, by making sharing the default, we are looking at the end of social networks altogether. If a song is shared on Facebook and nobody listens to it, does it make a sound?

Related:

April 21 2011

02mydafsoup-01

Social Europe Journal - Gesine Schwan - The Equality Dimension of Education - 2011-04-21

------------------------------------------------------------------

Watch Professor Gesine Schwan (Humboldt-Viadrina School of Governance) discuss the equality dimension of education.

This speech was recorded in Stockholm at the “Justice and Equality for the Good Society Conference” organised by the FES Stockholm, Arbetarrörelsens Tankesmedja and Social Europe Journal on 14/15 April 2011.

About Gesine Schwan

Gesine Schwan is a German political science professor and member of the Social Democratic Party of Germany. The party has nominated her twice as a candidate for the federal presidential elections.

Watch Professor Gesine Schwan (Humboldt-Viadrina School of Governance) discuss the equality dimension of education.

This speech was recorded in Stockholm at the “Justice and Equality for the Good Society Conference” organised by the FES Stockholm, Arbetarrörelsens Tankesmedja and Social Europe Journal on 14/15 April 2011.

November 23 2009

More that sociologist Erving Goffman could tell us about social networking and Internet identity

After

posting some thoughts

a month ago about Erving Goffman's classic sociological text, The
Presentation of Self in Everyday Life
, I heard from a reader who
urged me to try out a deeper work of Goffman's, Frame
Analysis
(Harper Colophon, 1974). This blog presents the thoughts
that came to mind as I made my way through that long and rambling
work.

Let me start by shining a light on an odd phenomenon we've all
experienced online. Lots of people on mailing lists, forums, and
social networks react with great alarm when they witness heated
arguments. This reaction, in my opinion, stems from an ingrained
defense mechanism whose intensity verges on the physiological. We've
all learned, from our first forays to the playground as children, that
rough words easily escalate to blows. So we react to these words in
ways to protect ourselves and others.

Rationally, this defense mechanism wouldn't justify intervening in an
online argument. The people arguing could well be on separate
continents, and have close to zero chance of approaching each other
for battle before they cool down.

When asked why forum participants insert themselves between the
fighters--just as they would in a real-life brawl--they usually say,
"It's because I'm afraid of allowing a precedent to be set on this
forum; I might be attacked the same way." But this still begs the
question of what's wrong with an online argument. No forum member is
likely to be victim of violence.

We can apply Goffman's frame analysis to explain the forum members'
distress. It's what he calls a keying: we automatically apply
the lessons of real-life experiences to artificial ones. Keying allows
us to invest artificial circumstances--plays, ceremonies, court
appearances, you name it--with added meaning.

Human beings instinctively apply keyings. When we see a movie
character enter a victim's home carrying a gun, we forget we're
watching a performance and feel some of the same tightness in our
chest that we would feel had it been ourselves someone was stalking.

Naturally, any person of normal mental capacity can recognize the
difference between reality and an artificial re-enactment. We suspend
disbelief when we watch a play, reacting emotionally to the actors as
if they were real people going about their lives, but we don't
intervene when one tries to run another through with a knife, as we
would (one hopes) in real life.

Why do some people jump eagerly into online disputes, while others
plead with them to hold back? This is because, I think, disputes are
framed by different participants in different ways. Yes, some people
attack others in the hope of driving them entirely off the list; their
words are truly aimed at crushing the other. But many people just see
a healthy exchange of views where others see acts of dangerous
aggression. Goffman even had a term for the urge to flee taken up by
some people when they find that actions go too far: flooding
out
.

I should meekly acknowledge here that I play Nice Guy when I post to
online forums: I respect other people for their positions, seek common
ground, etc. I recognize that forums lose members when hotheads are
free to roam and toss verbal bombs, but I think forums may also lose a
dimension by suppressing the hotheads, who often have valid points and
a drive to aid the cause. One could instead announce a policy that
those who wish to flame can do so, and those who wish to ignore them
are also free to do so.

How much of Goffman's sprawling 575-page text applies online? Many
framing devices that he explored in real life simply don't exist on
digital networks. For instance, forums rarely have beginnings and
endings, which are central to framing for Goffman. People just log in
and start posting, experiencing whatever has been happening in the
meantime.

And as we've heard a million times, one can't use clothing, physical
appearance, facial expressions, and gestures to help evaluate online
text. Of course, we have graphics, audio, and video on the Internet
now as well, but they are often used for one-way consumption rather
than rapid interaction. A lot of online interaction is still carried
on in plain text. So authors toss in smileys such as :-) and other
emoticons. But these don't fill the expressiveness gap because they
must be explicitly included in text, and therefore just substitute for
things the author wanted to say in words. What helps makes
face-to-face interactions richer than text interactions is the
constant stream of unconscious vocal and physical signals that we
(often unconsciously) monitor.

So I imagine that, if Goffman returned to add coverage of the Internet
to Frame Analysis, it would form a very short appendix
(although he could be insufferably long-winded). Still, his analyses
of daily life and of performances bring up interesting points that
apply online.

The online forums are so new that we approach them differently from
real-life situations. We have fewer expectations with which to frame
our interactions. We know that we can't base our assumptions on
framing circumstances, such as when we strike up a conversation with
someone we've just met by commenting on the weather or on a dinner
speaker we both heard.

Instead, we frame our interactions explicitly, automatically providing
more context. For instance, when we respond to email, we quote the
original emails in our response (sometimes excessively).

And we judge everybody differently because we know that they choose
what they say carefully. We fully expect the distorted appearances
described in the Boston Globe article

My profile, myself
,
subtitled "Why must I and everyone else on Facebook be so insufferably
happy?" We wouldn't expect to hear about someone's drug problem or
intestinal upset or sexless marriage on Facebook, any more than we'd
expect to hear it when we're sitting with them on a crowded beach.

Goffman points out that the presence of witnesses is a frame in
itself, changing any interaction between two people. This definitely
carries over online where people do more and more posting to their
friend's Facebook Wall (a stream of updates visible to all their other
friends) instead of engaging in private chats.

But while explaining our loss of traditional frames, I shouldn't leave
the impression that nothing takes their place. The online medium has
powerful frames all its own. Thus, each forum is a self-contained
unit. In real-life we can break out of frames, such as when actors
leave the stage and mingle with audience members. This can't happen
within the rigidity of online technology.

It can be interesting to meet the same person on two different forums.
The sometimes subtle differences between forums affect their
presentation on each one. They may post the same message to different
forums, but that's often a poor practice that violates the frames on
one or more forums. So if they copy a posting, they usually precede it
with some framing text to make it appropriate for a particular forum.

Online forums also set up their own frames within themselves, and
these frames can be violated. Thus, a member may start a discussion
thread with the title "Site for new school," but it may quickly turn
into complaints about the mayor or arguments about noise in the
neighborhood. This breaks the frame, and people may go on for some
time posting all manner of comments under the "Site for new school"
heading until they are persuaded to start a new thread or take the
arguments elsewhere.

A frame, for Goffman, is an extremely broad concept (which I believe
weakens its value). Any assumption underlying an interaction can be
considered part of the frame. For instance, participants on forums
dedicated to social or technical interactions often ask whether it's
considered acceptable to post job listings or commercial offerings. In
other words, do forum participants impose a noncommercial mandate as
part of the frame?

A bit of history here can help newer Internet denizens understand
where this frame comes from. When the Internet began, everything was
run over wires owned by the federal government, the NSFNET Backbone
Network. All communication on the backbone was required to be
noncommercial, a regulation reinforced by the ivory-tower idealism of
many participants. Many years after private companies added new lines
and carried on their business over the Internet, some USENET forums
would react nastily to any posting with a hint of a commercial
message.

Although tedious--despite the amusing anecdotes--my read of Frame
Analysis
was useful because I realized how much of our lives is
lived in context (that is, framed), and how adrift we are when we are
deprived of those frames in today's online environments--cognitively
we know we are deprived, but we don't fully accept its implications.
Conversely, I think that human beings crave context, community, and
references. So the moment we go online, we start to recreate those
things. Whether we're on a simple mailing list or a rich 3D virtual
reality site, we need to explicitly recreate context, community, and
references. It's worth looking for the tools to do so, wherever we
land online.

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