PPR Day 2: The Med Men?

Opening keynote today was Adam Tanner, regular PPR attendee and author of forthcoming Our Bodies, Our Data: How Companies make Billions Selling Pir Medical Records. If today’s presentation was an indication, this will be a cracking read and one can imagine a TV series spinning off, covering the emergence of large data processing of medical records originating in early student research of sales in pharmacies, gathered by hand. Throw in obfuscation of origins of the early company leaders of RMI, including a Nazi escapee who reinvented his own history in the US, and you have a potboiler of history, industrial development and the milking of huge profits from personal health data. Due out Jan 2017, I’ll be reporting more when I get it.

Did PCORI tell us that informed consent is impossible in the age of big data?

The mid morning panel is examining the role of AI in the use of health data involving Christo Wilson from Northeastern and Adrian Gropper. Interesting issues raised about how ready are we to adopt processes whereby individual’s health records are mined and analyzed to identify health concerns that are brought to people’s attention once they reach some trigger point? More, what do we do when we end up relying on IBM Watson more than a human medical expert to diagnose our conditions? Do we license algorithms? Who is watching those who will use the tools to watch us?

PPR Summit 2016

Each year I attend the Patient Privacy Summit in DC and it usually takes less than five minutes from an opening speaker for me to learn something new. Today we are quickly informed that the Fitbit apps (and their like) capture all that movement data you provide and share it with multiple third parties (18 in one case) all trying to piece together records of your life. As are retailers like Macy’s who in an effort to compete with the analytics available to online retailers, are using face recognition software in their store to identify shoppers and track their behavior and purchases.

Joe Cannataci’s opening keynote is remarkably rich in quotes about privacy and data capture that predate current discussions by decades but which strike to the core of current debates. Without privacy, he argues, we are shorn of a protective cloak and become amenable to the manipulations of others. Informational self-determination is key to our future. And he also argues we need more understanding of the psychology of privacy as much as the law and technical aspects — clearly an iScholar at heart. His stunning conclusion is that in some countries now, a person has more privacy when dead than they do when alive. And with China embarking on a major social credit system aimed at ranking every citizen in order to ‘improve’ society, you wonder why there seems to be so little serious information scholarship on privacy.

The following panel on real world experiences of health data being shared is heartbreaking. A very brave woman shared how her company, learning she had cancer, made her working conditions a living nightmare, trying everything to get rid of her from the payroll. You think we live in a civilized world with worker protections? Get real. Individuals facing these types of challenges from employers feel powerless and obviously do not have easy access to legal representation. Harrowing personal stories.

Further interesting snippets:

  • If someone knows your birth year, zip code and gender, they can identify you with >60% probability
  • If you rate three movies you rent on Netflix, your identity can be determined with 80% probability
  • Even after opting out of data sharing, your data is often still shared.

What is equally disturbing about much of this is the fact that these findings have been known for some years yet few people seem aware or to care.

More updates to follow – but if you are in DC today and tomorrow, this summit is free to attend, join us at the Georgetown Law Center on New Jersey Ave.

Austin Google Community Forum

Spent most of Monday afternoon at the Google Fiber community forum at the Palmer Center. Roughly 150 participants representing organizations proposed to receive 1gb  connections when Fiber is rolled out in Austin came to hear a few of us talk about the challenges and possibilities this offered. Amid all the hoopla about speed, I encouraged folks to remember that no matter how fast the ‘net gets, people are still people so their cognitive processing won’t get any faster, their reading and viewing habits will remain and we should all work on designing through community involvement not just data deluge. I enjoyed the events and am pleased to offer the opportunity for our students to get involved. I just wish, when speakers are told to prepare their talks to be no longer than five minutes, some would not conveniently blow through this limit and hog the stage for double this. Ah, but what was that I was just saying about people not getting any faster……

Hijacking conferences by any other name

In our field, the HICSS conference is rather well known, not least for its choice location (Hawaii) at a time of year (January) when most US folks want a break from the weather. I’m not a huge fan of the work there but some folks try to convince me it’s the real deal (usually the folks who go!). The acronym HICSS stands for Hawaii International Conference on System Sciences. So successful is this conference that another has emerged, totally unrelated, also in Hawaii and also going by the acronym HICSS. Only this time, the SS stands for Social Sciences. Their call for papers is suitably all-embracing so that most disciplines could find a home here (and they organize island tours too!). It is not clear that any papers are reviewed which you think might put some providers of funding off the event but the conference certainly gets attendees.

The idea of two almost identically named conferences existing in the same location might be a coincidence but I don’t imagine so. The newer version makes little effort to disambiguate itself from the original and an email to the organizers just brought a curt reply that they were not in any way related to the original HICCS. They certainly don’t mention who the organizers or the reviewers might be either. Suspicious yet?

The emergence of bogus conferences has been documented in New Scientist and shows no signs of letting up. I heard colleagues mention it at the Council of Scientific Society Presidents’ meeting as a growing challenge in some fields. The most blatant efforts actually run shadow conferences at the same time or a week adjacent to the target conference, with a similar name, and lure people into believing it is a legitimate venue, charging them handsomely for attendance. Since many associations and hotels rely on the profit from conferences, you can see the challenge. You’d think scholars would not fall for it but then, how many folks opened that email call from the ‘other’ HICSS and thought a trip to Hawaii might be nice?

It’s not just conferences. I get an email every other day from some dubious publisher inviting my paper submissions. Follow the trail and you’ll find an editorial board of nobodies from far-flung universities that may or may not exist and then the real kicker, the page fees that you will be liable for when your paper is accepted (and it will be accepted). Open source publishing efforts have a real battle on their hands to demonstrate legitimacy and the frightening prospect of both the cowboy publishers and the traditional, conservative corporate publishers benefiting from this muddying of the waters is very real. Here’s another challenge for information science.

Down and out in Philly

ALISE 2014 promised a theme related to entrepreneurship in education, another hackneyed application of the term in university life. To this end, we were addressed by a keynote speaker who seemed to be selling Coursera as a solution to a problem some of us don’t have (imagine, they have now ‘discovered’ that students repeat-view the more difficult parts of a lesson!) and the E-word found itself in session titles throughout. The fact that people shoved papers into panel formats (or rather, ignored the panel format and proceeded to present disconnected talks in the form of papers) added to the sense that some conferences are really not quite what they should be. Only rarely did a critical voice raise itself to question the theme or its substantive absence in discussions. Sadly, most people I spoke with felt the same. The very dull Doubletree (perhaps the ugliest architecture in an otherwise attractive downtown) did not help.

The Deans and Directors Council was actually quite energized however, with a lively exchange aimed at pushing back on some of the accreditation nonsense regulations increasingly imposed on us. Here was a venue that actually felt like something constructive was happening and the group agreed to move forward on an action plan. Now that is educational entrepreneurship.

CSSP: best content in a conference I’ve experienced

Despite the efforts of the winter weather and an over-complicated information system owned by American Airlines (which has little real information to offer), I managed to attend part of the Council of Scientific Societies Presidents meeting in DC this weekend. Session for session, there is more substance in this gathering than I’ve experienced at other conferences. Every speaker seems really top-notch and able to deliver deep content in a manner that truly spans disciplinary boundaries. Most enjoyable was Rob Dietz’s overview of the Center for the Study of Steady-State Economy’s work on assessing the real costs and values of our current use of the planet. He made a lot of sense, and made an even stronger impression when he revealed he believed so much in this approach to economic modeling that he had moved his whole family into a sustainable community housing arrangement in Oregon. Untitled 3-1 (dragged)

Among his many messages, I took away the argument that economic growth is a really inappropriate measure or goal for a nation to live by and that we need to rethink our collective sense of what is good for our societies, measure this appropriately, and then set policy. Of course, much of this also requires behavioral changes that perhaps economists are not best equipped to understand. More interdisciplinary challenges ahead.

Lots of other good stuff at CSSP, including a too-short but important committee discussion on the need (or not, as I argued) for longer moratorium periods for scholarly work in open access publication processes. I understand the realities of professional associations and their publication revenues, but we are entering an age where the ideas and requirements for access will so fundamentally shift scholarly practices that locking material down to protect the market for certain journals will no longer seem viable. It’s fair to say, I was in a minority on this one but the discussion was instructive.

While CSSP is really a closed shop, it is possible to represent your society there without being president. I suspect the small size and selectivity is not independent of the resulting high quality discourse, but what a shame more academic gatherings were no so stimulating.

Learning a lot at CSSP

I attended the Council of Scientific Society Presidents meeting this past weekend in DC and it proved fascinating. A slate of top speakers covered advances and challenges across the spectrum of scientific enquiry, and both the stories and numbers are thought provoking.  How about unique and groundbreaking drug therapeutics research that cannot get published as reviewers don’t think it’s interesting enough? Or imagine looking for one data point in trillions to test a theory in physics? The information angles here alone are challenging.

Lori Garver of NASA delivered a myth busting talk about how they work and what they do. The organization, with 18000 employees and 40000 contractors has a $17bn annual budget,  is still committed to human space exploration, And spends half its budget on just this. She also confirmed that no dinosaurs were found on Mars!  Meanwhile, the man from Monsanto (aside from noting that a scarily high proportion of the US population believes its food is made in grocery stores!) referenced studies showing that the most noticeable shift in behavior that comes from increased prosperity is a shift in diet from grains to meat, which has major implications for our planet.

CSSP is a great group for ideas and its clear that many professional societies share the same problems with dwindling memberships and threatened publication shifts. It seems many members no longer value the publications that once one joined a society just to obtain. The bundling process, aggressive publisher pricing, and general worry over control runs across disciplines and there was a lively discussion in one of my groups about CSSP serving as a leader in new consortial efforts to retain control of scholarly publishing at the professional society level. More on this for sure.

All told, a great group and a stimulating event that rivaled (and beat) most academic conferences I’ve attended over the last decade. And this from a group of people who are mostly strangers to each other, personally and professionally. Proof indeed that ideas matter more than identity.

 

Austin Forum talk coming up

With my colleagues Diane Bailey and Randolph Bias, I will be presenting a public forum next week. If you are in Austin and interested in the nature of information work, feel free to attend. Details below — wine, snacks, stimulation assured. You must RSVP to get in.

Austin Forum: Product Design: The New Interplay of People, Objects and Information April 03 5:45 PM – 7:30 PM

WHAT: The Austin Forum on Science, Technology & Society
WHEN: Tuesday, April 3
5:45-6:30pm Networking Reception
6:30-7:30pm Presentation and Q&A
WHERE: AT&T Executive Education and Conference Center, 1900 University, Amphitheater (Room 204)
COST: Free and open to the public
WEBSITE: www.austinforum.org
RSVP: info@austinforum.org

Designing a product well requires knowledge of the user and knowledge of the product-as-object. Advances in communication technology, including computational software, simulation tools and social media, place an increasing wealth of information in the hands of designers about users and objects. The challenge of modern product design is to harness that wealth of information.

This talk will cover issues in how to design successfully in an information-rich world by breaking the process into three parts: 1) understanding how users process information in information-rich environments; 2) understanding how we think of objects as they become increasingly digital and virtual via new technologies; and 3) understanding how users interact with physical and virtual objects. The panel will consider the broader implications for design as well as what happens when design falters in any one of these three areas. Location: AT&T Executive Education and Conference Center

ALISE 2012 done and dusted

I spent the week in Dallas at the ALISE conference which I co-chaired with the irrepressible Toni Carbo this year. Despite what people might tell you, chairing takes its toll but I was pleased with the results. I led the portfolio review section on Tuesday pm which involved meeting with (mostly) soon-to-be doctoral graduates who wanted to discuss their resume and interview tactics. I was ably assisted by a team of fellow academics and I believe we advised more than 20 interested participants in three hours. The process is rewarding even if neither group entirely understood in advance what the session would entail. That needs improving next year but the quality of resumes I reviewed was impressive.

Opening keynote speaker was David Ferriero, Archivist of the United States, who gave a very engaging and direct explanation of NARA and the changes he was leading within that organization. I smiled when he reported that upon his appointment he was met with minor outcry in some quarters that he was not an archivist really but a librarian! I smiled further at his conviction to break down the barriers between libraries, archives and museums so as to focus each community on the essential similarities of their roles. Music to many of our ears I am sure. A lively Q&A followed and David was not shy about expressing his views on most issues (except SOPA!).

This year we imposed stricter review standards on papers and while most people seemed to think this improved the conference there were, as expected, some dissatisfied folks who did not get their work included. Not sure how people can expect us to have a vibrant program and more open acceptance but the number of opportunities for poster presentations means there is a way of enabling participation by those who otherwise could not get funded to come. Have to say, I have never been a fan of poster sessions though. I appreciate the opportunity for inclusion but I really dislike the dynamics which puts pressure on everyone to speak or listen in such a structured manner even when it is clear that mutual interest is limited. Variants that include 1-minute madness sessions are useful here as then every presenter gets a moment but when room layout dictates floor traffic, you know some folks are going to have a less than productive experience.

For the final session I led an interactive (and it was) session examining how ALISE, ASIST and the iConf might work better together. The idea was to engage the three main conferences where faculty and deans of LIS programs engage each other in research and education discussions but naturally I offended some other organizations by leaving them out. The general feeling I left with suggested there is some mileage now in our thinking collectively about reducing overlap, bringing relevant events together and even, given a suggestion by Marcia Bates (star of ALISE 2012 in my view) rethinking our various groups into a collective within an umbrella organization not unlike the structure of ACM. Time for an International Association of Information Societies anyone?

Downsides were few – but heaven help us, conference hotels on the side of the interstate that require you to find a cab just to get dinner should be blocked at the building approval stage. Yes, I know it’s Texas, and conference hotels are booked years in advance but if you’re spending more on cab fares than anything else, something’s wrong with the location. As always, you can’t be in two places at one time so no doubt I missed something or someone I should have seen but that’s life at a conference.

 

 

 

Pecha Kucha at ASIST09

The closing keynote session in Pecha Kucha format was a first for me and the experience was instructive. Listening, it seemed people managed to get an awful lot into six minutes, even if they were reading their notes (though you just have to love Candy Schwartz meta-tweeting in real time from the stage). Talking, it seemed the minutes flew by much quicker before I could make my point. Maybe that IS the point — when we talk, we think we need more time to say what we want to say but we really don’t. Anyhow, it made me wonder if we should not ask all conference presenters to limit their talk to 10 mins and force the matter when they go longer. And maybe it’s time to ban powerpoint or limit people to 5 slides. I was surprised that the format did not create lots of questions among the panelists (especially when Gary Marchionini was pushing video as panacea) but all I can say is that we all felt it was time to hear from the audience. The questions, like the presentations, went everywhere, and I found a couple of them to be interesting in unexpected ways e.g., did our graduates who studied new media, digital diversity, and information filtering get jobs? Really, you have to ask? But the cheer that went up when I suggested, in response to Toni Carbo’s question of how ASIST might engage more international members, that we drop “American” from the name, really impressed me. Maybe it was the Canadian audience 😉 I’ve always believed would could keep the acronym and the journal but call the society something like the “Associated Society of Info Sci and Technology” or the “Association for the Study of Info Sci and Tech”, it doesn’t really matter as long as people keep using the term ASIST. Anything’s got to be better than SLA’s proposal to become ASKPro.

Not sure what was captured or will be made available, but it was a novel experience, and how many of those do you normally get at an ASIST conference?

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