— UPDATE —
The blog post mentioned below is now also featured in a Seattle Times article about women who code.
— UPDATE —
I hesitated, a few weeks ago, to participate in a radio conversation with with Stuart Reges and a host. Reges is the author of the now notorious post titled ‘Why Women Don’t Code‘. Since then, I’ve found myself asking what happens if I leave the podium, who’s left to speak out?
I declined, I admit, because I was afraid — afraid that I would say the wrong thing in a situation where I’d have to think on my feet, perhaps overclaim or make a statement that the literature (which is not directly in my field) does not support. I silenced myself rather than take a chance to make a difference because I lacked the self confidence to participate. But finding my voice
means speaking out even when it makes me uncomfortable.
That’s why I spent the last week working on a medium post titled “Why Don’t Women Want to Code? Ask Them!” In it, I argue using a series of anecdotes that one of the ways in which we fail women is by assuming that we know what is influencing their decisions. As my friend Sandy Kaplan said, after providing feedback on my medium post, “Assumptions shroud in mystery that which must be exposed to light to heal.”
This post was not easy to write — it required hours of work, and was improved by the generous feedback of many people. I note this because the labor of telling this story needs to be acknowledged. Many thanks go to my sister in law, spouse, friends, and fellow faculty.
I have been asked in a couple of different forums about how I have gone about parenting my children with respect ot technology. What came out of that thinking lacks any formal reference to literature, but it does represent my experience. I’ve always felt that despite many potential negatives (and despite being mostly a homesteading luddite sort at home), technology has an important positive role to play as well in my children’s development.
Technology today is a human creation; underlying that creation is a set of crafting skills. The ability to imagine an artificial action in the world, create an image or a movie, print a mechanical object, or send a message all depend on these skills. Yet many of our children never progress beyond simply consuming the artifacts and messages that others create. This article explores, through a series of anecdotes, my personal parenting experiences with technology and tries to shed light on some of the challenges and opportunities my family faced.
My daughter is 2 or 3 or 4. She sees phones around her, and is fascinated by them. Relatives give toy phones that light up and ring to my dismay. Parents are begged for phones. Swiping an iphone or ipad is so intuitive she can do it with ease. We work hard to put computers and phones away in front of the kids, and to do housework, play, singing, and other acts of togetherness when parenting them…. A few months (or a year) pass. I am sick with chronic Lyme disease for many months and years, and find myself learning to parent slowly rather than trying to do everything. We build a cloche, two screws at a time, cuddle, and nap together. One day I am too exhausted to get off the couch. In a fit of desperation I give in to repeated requests… to teach the children to knit, something I know is usually not introduced until first grade at their school. Am I a bad parent? One session and suddenly they’re off and running with this skill they have seen in almost every moment of quiet sitting.
We work hard as parents not to use technology in front of the children, and generally include them in our life rather than structure ours around theirs. All the same, as a parent, the questions I find myself asking about technology readiness and craft readiness are not that different whether it is digital technology, music, knitting, or anything else that the children so desperately want to participate in sometimes before they are of the traditional ‘age readiness’. I wonder why and whether one thing is worse than another. We settle on the rubric that physicality and creativity are important, but balance is equally important. Are they getting social time, exercise, play? Are they learning to handle frustration and self entertain? What is any activity substituting for that would be prefered? We try to minimize the ones we don’t like the answers for.
We are on a train. The train ride is 9 hours long, my children are 4 and 6 if I remember correctly. We have brought a movie, books, felt, yarn, conductive thread, LEDs, batteries, buttons, a multimodal cornucopia of ways to engage. We read, make yarn sculptures, walk the train. Sometime during the train ride I have the goal of learning how to make felt bracelets that can light up. The kids are fascinated. We lay the bracelet flat, but have to think about its top and its bottom and the circle that it creates when the snap is closed. Where does the thread need to go to create this effect? Can we make anything other than bracelets? What about a bookmark, that can tell you which page you were on? You could have two snaps, and fold it over to connect to one or the other depending on which page! The excitement is palpable, and the craft is more than do-able by both children. We make mistakes, plan badly, correct, eventually succeed. I wonder if I am breaking some rule by trying out a 6th grade exercise involving electricity on my 4 and 6 year olds, but I see nothing but pleasure and creativity in their response.
As a computer scientist, what has always fascinated me about technology is the power of arcane acts to create whatever I can imagine, and the importance of imagining good, useful things to create. Around this time I was also beginning to think about how to bring technology into my childrens’ middle-school curriculum, and this project was a first attempt. I am delighted by the invention of the bookmark and by the immediacy of the experience as well as the way it builds on the crafting skills my children already have.
We are leaving on sabbatical for a year. The children are 5 and 7. EBooks are big, it is 2011. Taking a library along would be impossible, but there is a plethora of free and excellent children’s literature (60 years old or older) available on amazon for the Kindle. We buy one and take it on sabbatical along with a drop spindle and a big pile of wool. We also buy the Rosetta Stone software. By the end of the year of travel, we have read innumerable books aloud. The children are used to kindles and have discovered at least one game which we ask them to stop playing. We have invented as many stories as we’ve read, and spun enough wool to knit a pair of socks by the end of Fall, which are completed just in time for Winter.
The kindle feels like a technology win. I like the fact that it is easy on the eyes, and that it lets us dig into so much great literature. Rosetta stone is like a game, but it also feels like a win. It is amazing how easily the kids can pick it up, and it helps lay the groundwork for them to learn two languages during the year we travel. I love the fact that it is so synergistic with other things we are doing (practicing as a family, working with a tutor, immersion in school). It turns out that the human tutor we see most often in the Rosetta stone software actually lives in Zurich, where we are as well. The connections between what we do in our technology, and what we do in our lives are rich and deep and our choices feel positive and right.
The children are older, maybe 3rd and 5th or 4th and 6th grade now. They have learned a little about Scratch programming, another technology that almost any crafty parent could pick up though of course I bring an ease and expertise to this because of my background. We try Raspberry Pis as well, a tiny computer that costs around $30, which they can experiment with and even destroy. We assemble 3D printer kits together because of my research.
I also want to set good examples of creative media use. I try to help with the computational things. All are unsatisfying. Scratch is so artificial. The Pis are slow, and hard to understand for the kids. Joint work is much harder in this realm. Meanwhile, technology’s negative side starts to rear its head. Among my own children and other children we know in the same age group, shockingly considering the age, some are caught reading pornographic fan fiction on a kindle, looking at pornographic videos, having their identity ‘stolen’ to text a hurtful message in their name, watching a spoof of a popular song dance video that turns out to be extremely raunchy.
I start to wonder what I have brought into my children’s lives and how I will proceed. We have many conversations about pornography, about privacy, about how every online act is essentially public. This feels similar to sexual education. Talking more, and earlier, but of course in age appropriate ways, is the foundation on which positive parenting can happen. Parenting this requires vigilance, openness, learning, and attention. This wondering is not confined to technology, however. A child’s awakening to the larger world is a fragile process and I conclude that I need to be as involved and aware as possible, but I have no answers.
These early years set the tone for our work as parents in a technological world. Hard limits in the domain of ‘media consumption,’ with the understanding the forbidden is sometimes more attractive than that which is experienced, discussed, and controlled. Concrete examples of positive uses of media such as learning language, reading emails together from far-away relatives and reinforcing what they are learning in school about searching for information online and evaluating what is trustworthy. Strong support for creative uses of technology, in collaboration with local organizations that support these activities in camps and after school sessions help foster this as well. We ultimately choose to allow unlimited use of the most challenging and creative of applications of technical skills, to support passion, and to teach balance with physical and social activity, as well as other hobbies.
To foster this in a positive fashion, we create a rich home environment that included homesteading activities, craft activities, music, cooking, and we gave them both the opportunity and responsibility to participate in that. We teach them to love the act of creation in many domains. We moved into a neighborhood where both children have friends nearby. All of these things helped to fill their time and create a healthy competition with technology. We’ve reached an equilibrium where the computer is just one of many hobbies, to be used for those things it is good at. Mixed in with all of this, we allow ourselves to enjoy and be amazed by their successes, whether online or offline. And the journey continues…
The SIGCHI Accessibility group has put out its 2017 report, which anyone can comment on. I’ve also pasted the text in here.
Contributors to the report: Jennifer Mankoff, Head, SIGCHI Accessibility Community, Shari Trewin, President, SIGACCESS
Contact person: Jennifer Mankoff, email@example.com
It has been two years since the SIGCHI Accessibility Community first published a report on the state of accessibility within SIGCHI, summarized in [Mankoff, 2016]. This report was the first of its kind for SIGCHI, and reflected a growing awareness in the SIGCHI community of a need to directly engage with and improve the accessibility of both conferences and online resources sponsored by SIGCHI. The report argued that “SIGCHI can attract new members, and make current members feel welcome by making its events and resources more inclusive. This in turn will enrich SIGCHI, and help it to live up to the ideal of inclusiveness central to the concept of user-centered design” and that ACM’s own guidelines clearly argue for a standard that SIGCHI was not meeting.
The report laid out a series of five recommendations for improving the accessibility of SIGCHI, including the accessibility of conferences (R1) and content (R2). Additional recommendations include a better process for handling accessibility requests (R3), increasing representation of people with disabilities within SIGCHI (R4) and assessing success at least once every two years (R5). This update is our attempt to fulfill R5.
The rest of this report starts an executive summary of the biggest accomplishments of the last two years (along with the data sources used to draw those conclusions). The remainder is organized by recommendation, highlighting the goals set out and what has been accomplished.
Table of Contents
The SIGCHI Accessibility community has made significant progress over the last two years, particularly on short term goals set out for R1 (conference accessibility), R4 (increasing representation) and R5 (assessing success). Less progress has been made on R2 (content accessibility) and R3 (handling accessibility requests). Most significant among our progress are the release of new accessibility guidelines for conferences collaboratively with SIGACCESS (http://www.sigaccess.org/welcome-to-sigaccess/resources/accessible-conference-guide/), publication of a CACM article on accessibility efforts within SIGCHI [Lazar, 2017], addition of an accessibility representative to the CHI Steering committee, and establishment of a facebook group, sigchi-access
Despite our progress, there are major steps that still need to be taken in every category. In addition, the last two years’ effort has made it clear that the five goals represent a more ambitious program than a small volunteer community can easily achieve all on its own. We are very grateful for the help of SIGACCESS and members of the SIGCHI leadership, which have made a huge difference in what the community was able to accomplish in the last two years. However, as long as we remain an all volunteer effort, the SIGCHI Accessibility community will have to decide what to prioritize over the next two years: Continued effort on R1, or other goals. For these reasons, we strongly recommend that both the SIGCHI leadership and the community consider what funds might be available to help move this effort forward, what tasks can be transferred to contract employees of SIGCHI such as Sheridan, and fundraising efforts to support these changes.
Analysis of SIGCHI Accessibility Metrics
The SIGCHI Accessibility Communities efforts focus on the digital and physical accessibility of SIGCHI resources. As such, important metrics relate to the experiences of people with disabilities who consume those resources as well as the overall percentage of the resources that are accessible. As will become evident in this report, our current focus is on online videos, pdfs, and conference accessibility. Thus, relevant metrics might include, for example, the percentage of new videos that are accessible, the percentage of PDFs that are accessible, the percentage of conferences that have accessibility chairs, and surveys of conference attendees.
For this report, the Accessibility Community combined several different sources of data. As with the previous report, much of our data is focused on conference and meeting participation, and we use the same categories: We refer the reader to the original report for details on these categories. To briefly summarize, we include direct observation, experiences reported by SIGCHI accessibility community members and survey data from conferences (CHI and CSCW 2014-16). Appendix A has the survey questions that were asked. We did not conduct a survey of our own of community members this year.
Overall, there is a trend toward increased accessibility at CHI, based on the conference surveys. However, these numbers are difficult to interpret since the direct question about access needs was not asked in 2016. In addition, it is possible multiple people might report on the same person not being able to attend, some of these answers are about financial barriers rather than disability, the sample is self selected, most people who cannot attend may not be remembered by attendees filling out the survey, and people with disabilities who attend may not want to disclose.
For all of these reasons, it is in many ways more instructive to look at the categories of issues reported. However, in our analysis, the majority of specific data reported was CHI 2016. Thus, we cannot easily describe trends over time. Here are the major categories mentioned in the open ended responses to the CHI 2016 survey: Difficulty of networking; lack of ramps for presenters; need for speech to text or sign language interpretation; need for accessible digital materials (program, maps, pdfs); distance between rooms; lack of reserved seats in the front of rooms (e.g., for the hearing impaired); cost of attendance for people with disabilities; prioritization of robots over people with disabilities; accessibility of robots; food issues; need for a quiet room or space; bathroom usability.
In addition, there were several issues that have to do with educating the community. These included the need to coach presenters to remember some people cannot see their slides, the importance of an SV orientation training segment for special needs work, the importance of publishing accessibility issues up front (before conference paper submission).
In terms of hard metrics, conference accessibility is increasing. In the chart below, a score of 1 means that either there was a page on the conference website that mentioned accessibility or an accessibility chair of some sort on the organizing committee (2 means both). The Total (bottom bar) is the total number of conferences that year that had at least a score of 1.
Video accessibility is also increasing, captions are now included in all videos uploaded through the official SIGCHI Video service (see R2). PDF accessibility is low, and not improving, hovering around 15% [Brady, 2015; Bigham 2016].
R1: Achieve Conference Accessibility
Ensure that 100% of conferences are accessible, have an accessibility policy and have a clear chain of command for addressing accessibility issues.1
The first recommendation from the 2015 report dealt with conference accessibility. The community set out a series of short term goals:
- [Not Met] Have an accessibility chair for every conference by the end of 2017. This goal has not been achieved. However, the SIGCHI accessibility community now has representation on the CHI steering committee, and was asked to present to the SIGCHI Executive Committee. Both groups voted to ask all conferences to have a web page documenting their efforts to be accessible (or acknowledging a lack of accessibility), specifically on a /access subpage of their conference URL.
- [Met] Educate the community. While there is always more work to be done, the SIGCHI accessibility community has participated in several education efforts, including the publication of an interactions blog post and article [Mankoff, 2016]; a CACM article on making the field of computing more inclusive [Lazar, 2017]; a 2016 SIG on the state of Accessibility within SIGCHI held at CHI [Rode, 2016]; the creation of a facebook group called SIGCHI-access; and the aforementioned presentations to the SIGCHI leadership.
- [Met] Create updated conference accessibility guidelines in collaboration with SIGACCESS. This goal was completed, and the guidelines are available at http://www.sigaccess.org/welcome-to-sigaccess/resources/accessible-conference-guide/
In addition to providing general guidance for making a conference accessible, the guidelines provide instructions specifically for how to generate the content that can be placed at the /access URL
To summarize, we have made some progress but not achieved our most important goal of widespread adoption of accessibility practices across conferences. In addition, we have not yet started the longer-term goal of best practices and financial viability. That said, we hope that the /access URL will move us toward the ultimate goal of having all conferences start planning on accessibility from the very beginning.
R2: Achieve Content Accessibility
Ensure that 100% of new content such as videos and papers meets established standards for accessibility and develop a process for achieving this.1
The SIGCHI Accessibility community has not focused as much attention on this goal as on R1 in the last two years. Our short term goals for content accessibility include assessing current status, creating guidelines to use as a standard, and developing a process for addressing accessibility. These goals need to be addressed for multiple types of content — papers, videos, and websites.
The SIGCHI Accessibility community, and others within CHI, have mainly focused on papers and videos in the last few years. No work has been done on websites. With regard to paper accessibility:
- [Partly Met] Assess current status. We do not have a comprehensive assessment of current status. However, some statistics on paper accessibility are available in the CACM article [Lazar, 2017]. Specifically, pdf accessibility of CHI papers from 2013 through 2016 is mentioned in that article, and the numbers hover around 15 percent in most years.
- [Not Met] Create guidelines to use as a standard. This is an open problem, particularly because in the case of paper accessibility, the most recent ACM revision of the SIGCHI template is less accessible than the 2016 version. SIGACCESS is experimenting with an HTML5 format that SIGCHI may want to adopt if it is successful.
- [Not Met] Develop a process for addressing accessibility. Multiple methods for paper accessibility have been tested so far (giving authors notifications of their accessibility flaws in CHI 2014, having a team of people making fixes on request in CHI 2015). It’s clear that the most effective approach used so far (based on the data in the CACM paper), is a contract-based approach that includes professional support, underwritten by conference or journal budgets. Such an approach will be more effective and consistent than one that relies entirely on author/conference volunteers.
With regard to video accessibility, progress has been very successful. A process for video captioning was piloted with the help of the SIGCHI CMC in 2014/2015, and has now been adopted as part of the SIGCHI Video service: “SIGCHI provides conferences with equipment to record talks… Conferences only pay for shipping the equipment, captioning and one additional student volunteer per track for recording” (emphasis ours). An external company (rev.com) is used to write up the captions, and SIGCHI’s video program chairs ensure they are uploaded with the videos.
Currently, more than 400 videos have been captioned (all keynotes and award talks, all talks from CHI 2015 and 2016). Additionally, this program has been expanded from just CHI to include all upcoming specialized conferences that use SIGCHI video equipment. Conferences added this year include UIST, ISS and SUI.
To summarize, progress has been very successful for videos, but is slow on pdfs, and nothing is known about websites. The SIGCHI Accessibility community believes that the primary barrier to meeting these goals is having enough volunteers to focus on them, and having a commitment to hire professional support to execute them. The success of the videos in comparison to papers is evidence for this. In addition, it is likely that better participation in R1 will be needed before process goals in R2 can be met effectively.
R3: Handle Accessibility Requests
Create a process for handling accessibility requests within SIGCHI1
- [Partly met] Create a single point of contact for accessibility questions and advertise it SIGCHI wide. The community has created a single point of contact for support and discussion through the facebook sigchi-access group6. However, there is still not a well known, established mailing list for more formal requests, conference chair support, and so on.
- [Not Met] Study the legal context. No effort has been put into this at the moment. However, external work to the SIGCHI Accessibility community has resulted in a first publication on this topic [Kirkham, 2015].
The progress on R3 is very slow. Visibility among the SIGCHI leadership, which has recently increased, should make it easier to establish a communication structure for supporting conferences and we are optimistic that this will change before the next report two years from now. Studies of the legal context is a costly proposition that may be harder to act on, and consideration should be put into what would best lay the groundwork to make this possible.
On the positive side, the SIGCHI Accessibility community has met its long term goal of establishing a position focused on Accessibility among the SIGCHI leadership, specifically with respect to representation on the CHI Steering committee mentioned above. Other long-term goals such as a SIGCHI-wide budget for accessibility have not been met yet.
R4: Increase Representation
Increase representation of people with disabilities within SIGCHI1
- [Goal Met] Run a networking event. This goal was met in 2016 in the form of a SIG on accessibility at CHI. In 2017 this was formalized through the addition of accessibility as a component of the Diversity and Inclusion lunch at CHI. Finally, SIGACCESS and the SIGCHI Accessibility community held a joint pizza party at CHI 2017. We hope to see these types of events continue on a yearly basis.
Our short term goal was met for R4, however the larger issue of inclusion is not resolved. It has been gratifying, though the SIGCHI Accessibility community takes no credit, to see the increased use of Beams to address accessibility, as well as the addition of remote committees to the CHI program meeting and the announcement of funding to increase diversity and inclusion events. Both of these help to increase access. However what is not clear is whether there is an increase in participation by people with disabilities or how we would measure that. In addition, there are other long term goals mentioned in the original report that we can consider working on in the next few years, such as fellowships, mentoring, and increased outreach to related stakeholders.
R5: Assess Success
Assess SIGCHI’s success in meeting accessibility guidelines at least once every 2 years1.
- [Goal Met] Produce regular reports. This report represents our success on the basic goal of reporting on progress, based on post-conference surveys and other data.
Our immediate goal of assessing and reporting on progress is met by this report. However, we have not established a sustainable approach to collecting the appropriate data on a regular basis, it is still very ad-hoc. Some metrics are ill defined or not tracked.
Assessment of program committees, awards, and so on, has not yet begun. However, we have been working with SIGCHI to ensure that conferences are assessed in a consistent way from year to year. The tentative survey questions we have designed for this purpose are:
Did you request any accessibility-related accommodations for the conference? Yes or No?
If yes, were your requests met? No, a little, some, a lot, Yes
What did you request and how could we improve your experience?
Possible additional questions if the chair wants:
Because we cannot know who did not attend the conference for accessibility reasons, it would be helpful to know about the existence of such issues. Please tell us if you are aware of a situation we should consider, while respecting the privacy of relevant parties.
Finally, the long term goal of taking the burden of reporting off the shoulders of volunteers has not been met. The SIGCHI Accessibility community should consider raising funds to support these efforts over the next few years.
Appendix A: Conference Survey Questions
At conferences, the following questions were asked:
CHI 2014/2015 Did you request any accessibility-related accommodations for the conference? If yes, were your requests met in a timely manner?
CHI 2014-2016 Do you know of any researchers, practitioners, educators or students with disabilities who wanted to attend the CHI conference, but could not because they required specific accommodations? What accommodations could we provide to help them attend?
CSCW 2015 Do you have any suggestions for things the CSCW 2016 planning team should particularly attend to in order to make sure the conference is accessible to people with disabilities?
All years: Sometimes generic questions about the conference received accessibility-spceific responses, which we also analyzed.
Appendix B: Changes to ACM SIGCHI Conferences Policy
http://www.sigchi.org/conferences/organising-a-sigchi-sponsored-or-co-sponsored-conference under accessibility was changed to say:
ACM strives to make conferences as accessible as possible and provide reasonable accommodations so individuals with disabilities can fully participate. In many countries this is a legal requirement, and compliance should not be taken lightly. We recommend appointing an Accessibility Chair for your conference. SIGACCESS and SIGCHI’s accessibility community have developed guidance for conference organizers that steps you through all stages of conference planning from site selection to the event itself. The SIGCHI accessibility community (reachable at SIGCHIaccess on facebook and firstname.lastname@example.org), SIGACCESS (reachable at email@example.com) and ACM support staff stand ready to help you make your event as inclusive as possible.
[Bigham, 2016] Jeffrey P. Bigham, Erin L. Brady, Cole Gleason, Anhong Guo, David A. Shamma: An Uninteresting Tour Through Why Our Research Papers Aren’t Accessible. CHI Extended Abstracts 2016: 621-631
[Lazar, 2017] Jonathan Lazar, Elizabeth F. Churchill, Tovi Grossman, Gerrit C. van der Veer, Philippe A. Palanque, John Morris, Jennifer Mankoff: Making the field of computing more inclusive. Commun. ACM 60(3): 50-59 (2017)
[Rode, 2016] Jennifer Ann Rode, Erin Brady, Erin Buehler, Shaun K. Kane, Richard E. Ladner, Kathryn E. Ringland, Jennifer Mankoff: SIG on the State of Accessibility at CHI. CHI Extended Abstracts 2016: 1100-1103
On Tuesday and Wednesday of this week we ran a 3D printing summit which focused on the intersection of computer science and additive manufacturing. We had an outstanding lineup of speakers who explored topics ranging from the challenges faced by users in understanding tasks both simple and complex to the applications of optimization and machine learning to design to a wide variety of materials to printing in the large. Each talk was wildly different and hugely fascinating.
One of the best parts of the event was that each speaker led a discussion group after their talk in which attendees had the opportunity to dig in depth into questions they had about the topics presented. To me, those discussions were often the highlight of the event.
One topic I want to highlight was applications of additive manufacturing and the constraints they bring with them. The discussion ranged widely here from fuel nozzles to tooling to jewelry. Important distinctions that came up include the size of the market (jewelry and tooling are both surprising large for example) and the degree of oversight needed for products to succeed.
Another very interesting question that came up was the extent to which the automated algorithms we saw presented are able to capture the whole toolchain. The toolchain itself is a topic for another day, as from an end user’s perspective it is needlessly complex. Worse, details such as the size of a printer nozzle may have profound implications for high level design decisions. If we can capture these relationships in models, they are more likely to succeed.
I was only able to attend about a third of the discussions (since they ran in parallel), and glancing at the notes from other groups I see topics as wide ranging as 3D scanning, the value of hardware vs software advances, wireless charging, and carbon fiber. I wish I could be a bird on the wall in every one of these discussions!
I just finished an inspiring day attending a capacity building for accessibility workshop at CMU organized by Carol Frieze and sponsored in part by Access Computing (who’s founder, Richard Ladner, who was the keynote speaker). At the event, Carol and Jeff Bigham were honored with the Access Computing Capacity Building Award, a well deserved honor.
It was wonderful to see the number of people in the room, and to realize just how strong and rich the accessibility community at CMU has become over the years since I arrived. Just to list a few of the faculty and post docs in the school of computer science who do accessibility research and were represented at the summit in some way, we have Henny Admoni, Chieko Asakawa, Jeff Bigham, Carol Frieze, Scott Hudson, Jennifer Mankoff, Luz Rello, Aaron Steinfeld and Sidd Srinivasa. Many others work in the area, such as folks associated with the Quality of Life Center that recently ended (its leaders were Dan Siewiorek and Rory Cooper). Of course that brings up the Department of Rehabilitation Science and Technology at the University of Pittsburgh, a rich resource and partner in much of our disability work, which Rory is a member of.
I’ll close by quoting our keynote speaker, whose goal is to see not only increasing attention to accessibility research, but increasing inclusion of people with disabilities in computing:
Computing fields need more people with disabilities because their expertise and perspectives spark innovation
As I’m ramping up for the CHI deadline once again, I find myself not only writing, but teaching about writing. I was lucky enough to learn writing from some experts during graduate school, and have had a lot of practice since. This year, in response partly to a request from my students, I’m trying to put excerpts that feel like nuggets I’ve repeated many times all in one place. So here are some common writing issues that I’m commenting on in CHI papers this year (in no particular order):
Introduction: What is the main promise, obstacle, and solution of the paper, at the level that you address it? I.e. don’t tell me that cats would be better off if their owners could only be more subservient (promise), cat owners don’t know what their cats want from them (obstacle) and we contribute a tool that helps cats and cat owners communicate (solution). In addition to being too high level, the promise and the obstacle don’t even entirely match up. Instead, tell me the specific communication problem you are probably working on (such as cats needing their litter box cleaned right away being fastidious), the specific obstacle (owners tend to place it where they can’t smell it) and the specific solution (a litter box smell sensor smart phone app?). Then generalize (this is an instance of better cat/owner communication etc etc). I’ve only been a cat owner for less than a year, so those of you who know cats better can probably think of a better example :).
Section structure: Every section needs some sort of story, which you should lay out in an overview paragraph (if you feel your text is redundant, fix that later, first get the goals down in overview form). Then there’s the section meat, and hopefully something at the end about what we learned. Not all that dissimilar from the whole paper. Every paragraph needs the same thing. Something along the lines of why the paragraph exists (i.e. a topic sentence that ties to the rest of the section in some way), the meat, and then an ending (what we learned). Again, redundancy is better at first and then you can streamline.
Related work: Each related work paragraph should start with a topic statement explaining what it is about (presumably with respect to those topics since you have established them as important). If there are other things you cover in related work, explain what they are and why you cover them in the paragraph where you touch on them. You might also try to end each related work paragraph with a summary sentence that restates the major benefit and open questions left by the work you just described. This should not be about your research, just about the gaps that are present.
Vocabulary: Papers often have jargon in them. For those of you who have a tendency to use too much jargon, pick a small number of new terms you will use, introduce them, and then use them consistently. For those of you who have a tendency to use too little jargon (i.e., if you find yourself saying ‘our model’ even when there are three different ones in your paper), follow the same advice :).
Keep a list of your writing quirks, whatever they are, as your editors uncover them for you. Inconsistent use of -? Lack of italics on latin? Forget to check that your reference program didn’t introduce errors? Excess word phrases such as ‘in order to’? When you get comments about wording, spelling, grammar, syntax, punctuation, and formatting add them to a hit list of things you spend 10 minutes checking before you send out each draft (and especially before you submit!). This will make life much easier for your reviewers.
Cutting … that should probably be a whole separate post. Just remember that more concise writing is usually better writing, so you almost always should cut words before content.
Niggles: I always assume that if I have a niggle, so will my reviewers (kind of how if one student asks something in class, probably others have the same question). So if you have a niggle of a doubt about anything, add a comment to your paper, or try to address it, or talk it over with someone.
I’m sure I will have more, but this is a start (and feel free to add your own ideas in the comments).
(Photo credit threecheersformcr_xo@Flickr)
At the CHI 2016 conference this week, there were a slew of presentations on the topic of fabrication. First of course I have to highlight our own Megan Hofmann who presented our paper, Helping Hands, a study of participatory design of assistive technology that highlights the role of rapid prototyping techniques and 3D printing. In addition, Andrew Spielberg (MIT & Disney Intern) presented RapID (), a joint project with Disney Research Pittsburgh which explores the use of RFID tags as a platform for rapidly prototyping interactive physical devices by leveraging probabilistic modeling to support rapid recognition of tag coverage and motion.
I was really excited by the breadth and depth of the interest at CHI in fabrication, which went far beyond these two papers. Although I only attended by robot (perhaps a topic for another blog post), attending got me to comb through the proceedings looking for things to go to — and there were far more than I could possibly find time for! Several papers looked qualitatively at the experiences and abilities of novices, from Hudson’s paper on newcomers to 3D printing to Booth’s paper on problems end users face constructing working circuits (video; couldn’t find a pdf) to Bennett’s study of e-NABLE hand users and identity.
There were a number of innovative technology papers, including Ramaker’s Rube Goldbergesque RetroFab, Groeger’s HotFlex (which supports post-processing at relatively low temperatures), and Peng’s incremental printing while modifying. These papers fill two full sessions (I have only listed about half). Other interesting and relevant presentations (not from this group) included a slew of fabrication papers, a study of end user programming of physical interfaces, and studies of assistive technology use including the e-NABLE community.
Two final papers I have to call out because they are so beautiful: Kazi’s Chronofab (look at the video) and a study in patience, Efrat’s Hybrid Bricolage for designing hand-smocked artifacts (video, again can’t find the paper online).
I’ve been teaching a course on using data for three years now, and it feels ‘finished’ enough that it is perhaps worth writing about. When I began the course, I had the goal of (1) exploring the human side of data, meaning the ways in which what we know about people impact our ability to make, process, interpret, and use data (2) make the course accessible to a broad variety of people (not just programmers) and (3) organize the course around modules that would produce nice portfolio items. The result is the course at data.cmubi.org. While it has evolved over the years, it’s always included at least a few beginner programmers, and the projects have been interesting opportunities for students to explore issues like interactive machine learning, data visualization, and topic areas they care a great deal about.
A big emphasis on the course is on data cleaning –understanding deeply the flaws in your data, from bias in data collection to missing values in data files. Many (hopefully most) of the projects below have significant sections documenting their sources and efforts / decision making around this topic.
Another big emphasis in the course is on understanding what the data will be used for, and by whom. Tied to this, we talk extensively about intelligibility in machine learning, the importance of narrative in visualization (and visualization in general), and the importance of defining the question you are answering.
Here are some of the highlights over the last three years:
Bus bunching is a phenomenon that can impact bus wait times. One of my 2016 students has been collecting data and extensively studying the phenomenon. His final project in the class drew on this data set and explores visual representations of the phenomenon.
Yelp data is always an area of interest. In 2014 … In 2015 students explored which state has the best pizza :). In 2016, the ‘Bon Yinzers‘ developed a wonderful series of visualizations of factors that affect popularity of Pittsburgh restaurants. They uncovered some interesting phenomena such as the unexpectedly off-cycle checkin times of the most active Yelp users in Pittsburgh.
San Francisco Crime Alert explores the likelihood of different types of Crime in different SF area neighborhoods. Their prediction algorithm gives you a way to explore the prevelance of major and minor crime in terms of time of year, time of day, and location.
In 2015, a group collected and analyzed data set of tweets by potential ISIS supporters, with the goal of ultimately engaging others in helping to label such data and understand how ISIS supporter accounts differ from other accounts with sometimes similar tweets (e.g. news accounts or bloggers).
Often, a goal of class students is more about policy than about end users. In 2015 Healt$care explores the quality of healthcare and its relationship to dollars spent across the U.S. in a highly visual fashion.
In 2014, a group asked what jobs are popular in what parts of the US?. Again a combination of data visualization and prediction supports exploration of the question. A similar approach was explored by a 2014 group that collected data about movie piracy and its relationship to DVD release strategies.
Sadly, not all of the older projects still work (web standards change so fast!). I wish I could provide links to work such as the Reddit AMA visualization pictured here.
I have been curious about AMIA for some time, and was even invited to be part of a panel submission to it this year. So when I realized it was only a few hours’ drive away, I took advantage of the closeness to plan a last minute trip. It has been an interesting experience and well worth the attendance. Although a very large conference, the group of people attending seems to be friendly and open, and I was welcomed in particular by two wonderful women I met, Bonnie Kaplan and Patti Brennan. The sessions are an intriguing combination of computer science, medicine, and clinical practice (with the quality of/knowledge about each varying based on the expertise/presence of appropriate collaborators). I attended sessions on Monday, Tuesday, and Wednesday. The theme that stood out to me more than any other across my experiences here was the great diversity of stakeholders that are (and especially that should be) considered in the design of effective health IT. Some very interesting observations came out of the large scale analysis of clinical data that I saw discussed on Monday. For example, there is a lot of attention being paid to data privacy (although one person commented that this is commonly misunderstood as “Uniqueness is not synonymous with being identified”) and particularly how to scrub data so that it can “get past IRB” for further analysis. One interesting approach taken by N. Shah (Learning Practice-based Evidence from unstructured Clinical Notes; Session S22) is to extract the terms (features) and use those instead of the data itself. Of course a limitation here is that you have to think of features ahead of time.
Another interesting topic that came up repeatedly is the importance of defining the timeline of the data as much as the timeline of the person. Questions that need to be answered include what is time zero in the data being analyzed (and what might be missing as a result); what is the exit cause, or end moment for each person in the database (and who is being left out / what is the bias as a result?); and the observation that in general “sick people make more data.” To this I would add that if you attempt to address these biases by collecting information there is potentially selection bias in the subjects and the impact of the burden of sensing on the data producer. Connected to this is the ongoing questions of the benefits and problems of a single unique identifier as a way of connecting health information.
Last observation from Monday is the question of what public data sets are out there that we should make ourselves aware of. For example, MIT has big data medical initiative and (also see http://groups.csail.mit.edu/medg/) and may have a clinical notes data set associated with it (I am still looking for this).
On Tuesday I started the day with S44: year in review (D. Masys). I missed the very start of it, but came in when he was talking about studies of IT’s use in improving clinical practice, such as a study showing that reminding clinicians to do their work better improves patient outcomes (“physician alerts” “embedded in EHR systems” etc), or maybe just improves process, with the observation that we should measure both. Interestingly to me, the question of also improving process and outcomes by organizing the work of caregivers (and reminding them of things) was missing from this discussion.
Dr. Masys then moved on to explore unexpected consequences of IT that had been published: adding virtual reality caused “surgeon blindness” to some information; missed lab results in another study and alert fatigue in another (drug-drug interactions suffer from 90% overrides…). Given the difficulty of publishing negative results, it would be interesting to explore this particular set of work for tips. It was also interesting to hear his critique of questionable results, particularly the repeated mentions of hawthorne effects because so many interventions are compared to care as usual (rather than an equal-intensity control condition). Another way of phrasing this is to ask at what cost does the intervention work (and/or how do we “adjust for the intensity of the intervention” )
Another category Dr. Masys explored of interest to me was health applications of mobile electronics. Briefly, one study looked at chronic widespread pain … reduced ‘catastophizing’; four looked at text messaging vs telephone appointment reminders; effectiveness of a short message reminder in increased followup compliance; text4baby mobile health program; cameroon mobile phone SMS 9CAMPS) trial (PLoS One)
Dr. Masys then moved on to the practice of clinical informatics and bioinformatics (out of “the world of rcts”). This focused on new methods that might be interesting. I particularly want to follow up on one of the few studies that looked at multiple stakeholders which had the goal of reducing unintended negative consequences; the use of registries to do low cost, very large trials; the use of a private key derived from dna data being encrypted for encrypting that same data; and the creation of a 2D barcode summarizing patient genetic variants that affect the dose or choice of a drug; and a demonstration that diagnostic accuracy was as good on a tiny mobile phone screen as a big screen.
The last category reviewed by Dr. Masys was editors choice publications from JAMIA; J. of Biomed. Informatics; and the Diane Forsyth award. Almost all of these seem worth reviewing in more depth — particularly the JAMIA articles scientific research in the age of omics (explores the need to increase accountability of scientists for the quality of their research) web-scale pharmacovigilance (used public search engine logs to detect novel drug drug interactions); CPOEs decrease medication errors (a meta study that basically concluded without realizing it that CPOEs would work better if we had only applied basic principals from contextual inquiry!) and the JBI articles by Rothman, who developed a continuous measure of patient condition-predicted hospital re-admission and mortality independent of disease (how does this compare with patient reported health status); Weiskopf (who documented the relative incompleteness of EHR data across charts he studied); Friedman’s overview of NLP state of the art and prospects for significant progress (summary of a workshop); Post’s article on tools for analytics of EHR data; and Valizadegan’s article on learning classification models from multiple experts who may disagree (given my interest in multiple viewpoints).
Next, I attended a panel about Diana Forsyth (obit; some pubs; edited works), an ethnographer who had a big impact on the field of medical informatics (and others as well) … she has passed away, and perhaps only a small number of people read work, but her work had an enormous influence on those people who encountered her writing on methods, research topics, and so on. She was compared by one panelist to Arthur Kleinman (who helped to make the distinction between the abstraction of disease and the human experience of illness; treatment and healing). Some of the most interesting parts of the discussion were focused on how the field is changing over time, prompted by a question of Katie Siek’s — for example getting data into the computer, computers into the hospitals, now making them work for people correctly, and what comes after that? Another interesting comment was about the authority of the physician being in part based on their ability to diagnose (which conveys all sorts of societal benefits). This points to the role of the physician (when diagnosis doesn’t exist human creativity is especially needed) versus IT (which can handle more well defined situations). However with respect to healing, maybe the power of physicians is in listening as much as diagnosing (also something computer’s can’t do, right?). Other topics that came up included the importance of the patient voice and patient empowerment/participation.
After lunch with a friend from high school I attended S66 (User centered design for patients and clinicians). In line with the hopes of the Forsyth panel I saw a mixture of techniques here including qualitative analysis. Unfortunately, what I did not see was technology innovation (something that may point to a different in vocabulary regarding what “user centered design” means). However the qualitative methods seemed strong. One interesting talk explored the issues in information transfer from the hospital to home health care nurses. A nice example of some of the breakdowns that occur between stakeholders in the caregiver community. More and more, however, I find myself wondering why so much of the work here only focuses on caregivers with degrees of some sort in medicine (as opposed to the full ecology of caregivers). I was pleased to see low-income settings represented, exploring the potential of mobile technology to help with reminders to attend appointments and other reminders; and a series of 3 studies on health routines culminating in a mobile snack application (published at PervasiveHealth) by Katie Siek & collaborators. One nice aspect of this project was that the same application had differing interfaces for different stakeholders (e.g. teenagers vs parents).
I started to attend the crowdsourcing session after the break, but it did not appear to have much in terms of actual crowdsourcing. An open area for health informatics? Instead I went on to S71, family health history & health literacy. The most interesting paper in the session, to me, looked at health literacy in low SES communities (by many co-authors including Suzanne Bakken). In particular, they have data from 4500 households which they would like to visualize back to the participants to support increased health literacy. Their exploration of visualization options was very detailed and user centered and resulted in the website GetHealthyHeights.org (which doesn’t seem to be alive at the moment). However I have concerns about the very general set of goals with respect to what they hope people will get out of the visualizations. It would be interesting to explore whether there’s a higher level narrative that can be provided to help with this. Similarly, does it make sense to present “typical” cases rather than specific data.
On Wednesday I began in S86: Late breaking abstracts on machine learning in relation to EMRs. This session had some interesting exploration of tools as well as some patient focused work. One study looked at prediction of mobility improvements for older adults receiving home health care, by subgrouping 270k patients and looking at factors associated with the subgroups. Steps included de-identification; standardize data; accounting for confounding factors; divide into sub groups; and then used data mining to look at factors that affected individual scores and group scores using clustering and pattern mining. An interesting take on what is part of the data “pipeline” that goes beyond some of the things I’ve been thinking are needed for lowering barriers to data science. Another looked at decision support for pre-operative medication management (an interesting problem when I consider some of the difficulties faced by the many doctors coordinating my mother-in-law’s care recently). This work was heuristic in nature (a surprising amount of work here is still focusing on heuristics over other more statistically based approaches). From this work I noticed another trend however, the need to connect many different types of information together (such as published work on drugs, clinical notes, and patient history).
The last session I attended was S92, one of the few sessions focused specifically on patients (and not very well attended…). The first talk was about creating materials for patient consumption, supporting access to EHRs, 2-way secure messaging, and customized healthcare recommendations. They focused especially on summarizing medication information concisely. The second is about a national network for comparative effectiveness. Maybe this is the crowdsourcing of health IT? This was focus group based research (a surprising popular method across AMIA given how little support there is for this method in HCI) exploring user attitudes about data sharing. Interesting that the work presented here ignored a long history of research in trust in computing e.g. from Cliff Nass, the e-commerce literature, and so on. However, the data was nicely nuanced in exploring a variety of ethical issues and acknowledging the relative sophistication of the group members with respect to these issues. The issues raised are complex — who benefits, who owns the data, how would the bureaucracy function, how to manage authorization given that studies aren’t always known yet (and opt-in vs opt-out approaches). I wonder how a market for research would function (think kickstarter but I donate my data instead of money…). The next paper looked at what predicted people thinking EHR are important both for themselves and their providers, and through a disparities lens.
The closing plenary was given by Mary Czerwinski (pubs) from Microsoft Research. I always enjoy her talks and this was no exception. Her focus was on her work with affective systems, relating to stress management. Her presentation included the a system for giving clinicians feedback about their empathy in consults with patients; as well as a system for giving parents reminders when they were too stressed to remember the key interactions that could help their ADHD kids. Interestingly, in the parent case, (1) the training itself is helpful and (2) the timing is really important — you need to predict a stress situation is building to intervene successfully (I would love to use this at home :). She ended by talking about a project submitted to CHI 2014 that used machine learning to make stress management suggestions based on things people already do (e.g. visit your favorite social network; take a walk; etc). One of the most interesting questions was whether emotional state could predict mistake making in coding data (or other tasks).
Would I go back a second time? Maybe … It is a potentially valuable setting for networking with physicians; the technical work is deep enough to be of interest (though the data sets are not as broad as I’d like to see). It’s a field that seems willing to accept HCI and to grow and change over time. And the people are really great. The publishing model is problematic (high acceptance rates; archival) and I think had an impact on the phase of the 3421work that was presented at times. What was missing from this conference? Crowdsourcing, quantified self research, patient websites like PatientsLikeMe, patient produced data (such as support group posts), significant interactive technology innovation outside the hospital silo. In the end, the trip was definitely worthwhile.
Some observations about people who might be interesting to other HCI professionals interested in healthcare. For example, I noticed that MITRE had a big presence here, perhaps because of their recent federally funded research center. In no particular order here are some people I spoke with and/or heard about while at AMIA 2013:
Patti Brennan (some pubs) is the person who introduced me to or told me about many of the people below, and generally welcomed me to AMIA. She studies health care in the home and takes a multi-stakeholder perspective on this. A breath of fresh air in a conference that has been very focused on things that happen inside the physician/hospital silo.
Bonnie Kaplan is at the center for medical informatics in the Yale school of medicine. Her research focuses on “Ethical, legal, social, and organizational issues involving information technologies in health care, including electronic health and medical records, privacy, and changing roles of patients and clinicians.”
Mike Sanders from www.seekersolutions.com, which is providing support for shared information between nurses, caregivers & patients, based in B.C. (Canada).
Amy Franklin from UT Health Sciences Center, has done qualitative work exploring unplanned decision making using ethnographic methods. Her focus seems to be primarily on caregivers, though the concepts might well transfer to patients.
Dave Kaufman is a cognitive scientist at ASU who studies, among other HCI and health including “conceptual understanding of biomedical information and decision making by lay people.” His studies of mental models and miscommunication in the context of patient handoff seem particularly relevant to the question of how the multi-stakeholder system involved in dealing with illness functions.
Paul Tang (Palo Alto Medical Foundation) is a national leader in the area of electronic health records and patient-facing access to healthcare information.
Danny Sands (bio; some pubs)– doctor; entrepreneur; founded society for participatory medicines; focus on doctor-patient communication and related tools; studies of ways to improve e.g. patient doctor email communication.
Dave deBronkart (e-patient Dave, who’s primary physician was Dr. Sands during his major encounter with the healthcare system), best summarized in his Ted talk “Let Patients Help” (here’s his blog post on AMIA 2013)George Demiris from University of Washington studies “design and evaluation of home based technologies for older adults and patients with chronic conditions and disabilities, smart homes and ambient assisted living applications and the use of telehealth in home care and hospice.”. His projects seem focused on elders both healthy and sick. One innovative project explored the use of skype to bring homebound patients into the discussions by the hospice team.
|Mary Goldstein who worked on temporal vision of patient data (KNAVE-II) and generally “studies innovative methods of implementing evidence-based clinical practice guidelines for quality improvement” including decision support.|
Mark Musen studies “mechanisms by which computers can assist in the development of large, electronic biomedical knowledge bases. Emphasis is placed on new methods for the automated generation of computer-based tools that end-users can use to enter knowledge of specific biomedical content.” and has created the Protégé knowledge base framework and ontology editing system.
Carol Friedman does “both basic and applied research in the area of natural language processing, specializing in the medical domain” including creating the MedLEE system (“a general natural language extraction and encoding system for the clinical domain”). Her overview of NLP paper was mentioned in the year in review above.
Suzanne Bakken (pubs) has been doing very interesting work in low income communities around Columbia in which she is particularly interested in communicating the data back to the data producers rather than just focusing on its use for data consumers.Henry Feldman (pubs) who was an IT professional prior to becoming a physician has some very interesting thoughts on open charts, leading to the “Open Notes” project
Bradley Malin (pubs) is a former CMU student focused on privacy who has moved into the health domain who is currently faculty at Vanderbilt. His work provides a welcome and necessary theoretical dive into exactly how private various approaches to de-identifying patient data are. For example, his 2010 JAMIA article showed that “More than 96% of 2800 patients’ records are shown to be uniquely identified by their diagnosis codes with respect to a population of 1.2 million patients.”
Jina Huh (pubs) studies social media for health. One of her recent publications looked at health video loggers as a source of social support for patients. She shares an interest with me in integrating clinical perspectives into peer-produced data.
|Katie Siek (pubs) who recently joined the faculty at Indiana does a combination of HCI and health research mostly focusing on pervasive computing technologies. One presentation by her group at AMIA this year focused on a mobile snacking advice application that presented different views to different stakeholders.|
|Madhu Reddy (some pubs) trained at UC Irvine under Paul Dourish and Wanda Pratt and brings a qualitative perspective to AMIA (he was on the Diana Forsyth panel for instance). He studies “collaboration and coordination in healthcare settings”|
|Kathy Kim who spoke in the last session I attended about her investigations of patient views on a large data sharing network to support research, but also does work that is very patient centered (e.g. mobile platforms for youth).|
|Steve Downs who works in decision support as well as policy around “how families and society value health outcomes in children”|
|Chris Gibbons (some pubs) who focuses on health disparity (e.g. barriers to inclusion in clinical trials and the potential of eHealth systems).|