Tag Archives: health

Bodily Autonomy, Surveillance, and Access

Agency and control. Two words that have become the center of every accessibility class I teach. Autonomy, and technologies that support them are at the heart of the work that I do.

But let me back up, re-enter my body, and own this moment. I am sitting on my couch crying. It has finally hit — one more hit in the ongoing series of outrages. Yesterday’s Supreme Court ruling is takes away agency and control, personal autonomy, and puts it in the hands of the government. As a disabled person, my fight is often about who should decide things. The insurance company that has refused to pay for treatment I or a loved one needs, determining that it is “unnecessary”, overriding both patient and doctor. A medical board that defines my condition and the treatment for it in terms that cause many doctors to deny me care. A university representative who tells me that I cannot have an accessibility need met, or that meeting it will jeopardize my career and expose me to the anger of my tenured colleagues. A professional organization that determines (over my objections) that including me in an important professional peer review opportunity in an accessible fashion would harm the outcomes of that process.

None of these examples are about abortion, but in all of these cases, I was interacting with individuals who told me their hands were tied because even if they supported my requests to decide for myself what was right for me and my loved ones, they simply could not do what I asked because the decision was out of their hands. I’m not describing something new here, these are just examples of structural barriers to access. And so I fight. I take on my professional organization and work to change it. I push my way up the administration hoping someone will take my side. I fight the insurance company, the state healthcare authority, and anyone else who stands in my way. I travel to a different state and doctor for treatment, or pay for treatment out of pocket since I am lucky enough to be able to afford that.

Having to fight such battles can risk our safety, may upset people (or organizations) who have power over us, and may require breaking rules and laws that restrict our autonomy. And this brings us to the possibility of surveillance, which may be used in enforcement. Apps, and devices, have increasingly become part of life, and necessary for healthcare management and accessibility, both critical for disabled people.

For example, and here I shift into a more speculative space informed by those around me, I might use a Fitbit to monitor my heart rate. Or, although I am a lipreader, I might increasingly use captioning not only because of more online meetings, but even in person, because of masking’s impact on lipreading. I might use Internet enabled hearing aids that have access to my audio environment. I might depend on a smart speaker as an accessibility solution.

What happens to the data that all of these devices collect? The FitBit could discover that I am pregnant. Changes in vocal fatigue during pregnancy means voice recordings may be able to be used to detect pregnancy (not to mention that search queries might reveal my condition). It is possible that captions could be used for surveillance too. As others have pointed out, privacy has eroded. For example, it is common to see data collected on one platform impact experiences on another. If any of this information is disclosed to the state, it could be used against me if I need, or get, an abortion. This puts my personal autonomy over my body in direct conflict with my body’s accessibility needs.

There are many reasons that the supreme court ruling overturning Roe Vs Wade is concerning for people with disabilities, as highlighted in this coalition letter by AAPD, ASAN, awnnetwork, Be A Hero, Bazelon Center, DREDF, CAP, Little Lobbyists, and Women Enabled International. The sad truth is that for people with disabilities, and many other marginalized groups, yesterday’s ruling will not stop abortions from happening. But it will force people to make impossible tradeoffs between safety, access and autonomy.

Life beyond science

I’ve come to realize over the years that one of the most important things we fail to do as academics is to share the reality of the priorities that we juggle and the ways we spend our time. Just a few days ago my husband and I took the time to talk about this with our son. Our ordering varied, but for both of us, family and health were among those at the top of the list, and our jobs were not first. My very top priority, personally, is sleep, followed immediately by family, because I need the former to prioritize the latter, due to my Lyme disease.

I think sometimes that our students don’t see this and we all worry about sharing that anything other than our jobs is a priority. So today, despite the looming CHI deadline, I am taking the time to make this post. I actually wrote most of it about two weeks ago. I decided to describe the day I’d just had, and spent a few minutes on it before stopping in the middle of a sentence, interrupted by something I have long since forgotten. Here’s what I wrote:

Today I am heartbroken, and angry. Distracted and busy, with many things that are anything but my job. I have a big personality when I want to, and the full force of it is concentrated elsewhere right now. That is ok, and it is as much part of me as being an academic.

I woke up this morning with a lot on my mind. So much that I popped awake right at 5:30am and had no hope of going back to sleep. Among other things, I was worried about our daughter’s insurance appeal case, which had probably been decided on Monday.

I made a concerted attempt to start the day out on a better foot, and after a nice talk with my spouse I made myself a coffee and finished reading the Sunday newspaper. I then began working on my new class for Spring 2021. I’ve been working on that now because I know I won’t have any time for it during the Winter quarter, and I’m unlikely to have much time for things once the kids start school since my daughter’s care needs may increase.

From 8:30-11, I met with students, and then had a directors meeting about the CREATE center and a mentoring meeting at 12:30. Just after 11, the insurance company called. I always take local calls because they are almost always medical-related, and handled that quickly making a plan to call back after hearing the important thing: That the appeal had been denied.

Needless to say I was very upset. My co-director kindly and with understanding asked if I still wanted to meet, and I proceeding because although upset I didn’t want to let them win or re-arrange anyone else’s schedule.

I knew the rest of the day would not involve much work of the traditional academic variety. Instead, I needed to go to battle again. I first spoke with the insurance company to find out more about what had happened. I was able to glean little from the call aside from the fact that my daughter’s case was one of 6 discussed that hour. This was our last internal appeal and our next step is an external board. I plan to use that process, but I also believe it’s time to shed light on the situation. After a conversation last night with a friend, who is going through the same appeals process with her children I was convinced that the insurance companies are more interested in making money than doing the right thing when it comes to our children’s futures.

I spent some time doing advocacy work to try to get her case attention, and helping my friend with her case, and then was interrupted by her need for care — a bad migraine and a number of spiking symptoms were making her extremely uncomfortable. 100% attention switch, fetching of supplies including hot chocolate, back and forth between that and my computer.

Another 100% switch to try to focus on my class, and a few urgent things (a paper revision and a slide deck for a funder) but I finally gave up after realizing I was wasting too much time on Twitter and Facebook and watched a movie about women scientists and then made dinner. What’s left of the evening will involve walking the dog…

I can’t tell you how that day ended. That in itself is a reflection of life as a caregiver and a parent and really any person coping with these unprecedented times. What I do know is this: in any time but especially in 2020 we should not judge the priorities we set ourselves, or others choose. That self care matters as much as all the rest, and when it is possible to do it, I will not feel guilty for doing so. And that imperfection, whether an unfinished or delayed blog post, or an abbreviated effort on a slide deck, is still worthwhile.

AMIA trip report

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).

My chronic illness and academia

A friend happened to send an interesting article  about chronic illness and academia my way today, and it made me realize that a post on the topic is long past due.

For those of you don’t know, I have Lyme disease. I was diagnosed in October 2007 (pre-tenure), but had been ill for at least a year before that. I blog about my Lyme disease at http://gotlyme.wordpress.com (inventive title, I know :)). A special section of the blog focuses on work and illness. Lyme disease was debilitating for me, and I was on disability (part time) during part of my treatment. I am now much better, but still have relapses about once a year and bad days more often. Prior to my experiences with Lyme disease, I had a very difficult repetitive strain injury that also caused severe impairment (typing at most 30 minutes a day at first, 2 hours a few years later). This occurred at the start of my PhD and lasted into the beginning of my first faculty position.

I don’t want to go into details about those illnesses here, rather I’d like to speak about the relationship between having an invisible chronic illness and being an academic. I have had more than one person approach me asking for advice and guidance as they deal with their own illness, usually by word of mouth. Illnesses like mine (and many other chronic illnesses) are mostly invisible, and it can be difficult to find information about how to cope with them. When other academics disclose their own struggles and process (such as Elyn Saks’ article about working with schizophrenia, or Gerry Gold’s article on the social context of long term disability as an option for those who are considering leaving work because of their illness) it can be eye opening and inspiring for those of us trying to find our own way forward. Equally important is access to facts, such as the AAUP’s report on how faculty members with disabilities should be accommodated.

For me personally, one of the biggest changes I’ve had to make (and most positive) has related to my  approach to managing my time. Time management has been a theme since early in my graduate school career and I have learned never to take time for granted, how to prioritize, and when to cut back. I discuss some of the things I learned on my Lyme blog:  managing an unpredictable illness, and trying to manage a full time job on a half time schedule.

Another big challenge has been disclosure. It took a great deal of time for me to value the label “disabled” as a valid description of myself, and I have always been sensitive about it not only personally, but also with respect to my work. I never filed anything official with the university during my graduate school experience. I did not speak of my impairment during my job search until I reached the negotiation stage. I did however confront our dean at the time when I thought he wasn’t doing enough to prevent others from suffering the same preventable injury I had.  At CMU, I spoke with my department chair as soon as I had a diagnosis. However, I waited to file anything official until I desperately needed a parking permit, and one close to my building. Even then I accepted second best up until the day when I almost collapsed trying to get from that spot to my office. Finally fired up, I marched (well hobbled with my cane) straight into the deans office and demanded something better.

Although I have disclosed much of my experience at this point and freely speak of it when it seems pertinent, there is still one area that I rarely discuss: the cognitive impacts of my disability.  At my worst, I would sometimes spend more hours each week in fog and pain than out. Thanks to my very supportive husband, I would grab my computer and do essential thought-work whenever the clouds cleared and he’d take the kids so I could do so. Even so I read one journal paper (submitted before my diagnosis) in horror when the proof came back a year later. I have experienced moments in meetings with students when I could not find the words to express my thoughts; been reminded that I just said the opposite of what I meant, and experienced large black spots in my memory. These moments (though thankfully mostly behind me) were experienced as fearful signs of the possibility that I might not be able to continue as an academic. Most difficult is when they occur in public contexts, such as the difficulties I had at a talk I gave a few years back, and the program committee meeting that led to a blog post on the difficulties of re-integrating into academia after a long pause.

But what has defined the positive side of my experience, more than anything, is the support of those around me. I will never forget hearing that my advisor almost got into a fight defending the truth of my claims that I could not type. Or the day that an angry stranger mumbled about supporting the disabled as he opened a door for me when the push button failed and my hands lacked the strength (this led to my eventual acceptance of the label disabled and a related lifelong interest in assistive technology research). I have had long phone conversations with a colleague in our field who experienced chronic fatigue. I have been given a role as a collaborator when I sorely needed it. Instant Message chats galore have enabled remote and close colleagues to help me work through difficult patches and decide strategy. I have been driven home countless time by a close friend when I ended my day too weak to bike or walk, and been given writing aids (as a graduate student with RSI) and more recently teaching leaves, co-instructors, extra TA support, classes scheduled around my disability, and control over my tenure clock.

If you experience a chronic illness, I encourage you to go after the support you deserve, accept help, and seek advice. Drop me a note any time. Check out the Chronic Illness and Academia forum at the Chronicle of Higher Education. Talk to the people you trust, and get advice about when to say more. Stand up for yourself when you need it, and if people are not supportive, find other friends. Above all, know that it is possible to be both disabled and an academic, if that is the path you choose.

Centre for the Study of Developing Societies

I am in Delhi for the week (mostly with family obligations), but I was able to sneak away for a few hours this afternoon (less time than I hoped) to visit the Center for the Study of Developing Societies, also home to innovative programs likeSarai and IM4Change.

I have been trying to get in touch with them for a few weeks, ever since a collaborator recommended I visit, and it was well worth the trip. I knew about their Hindawi project (which was one of the first attempts to localize the computer experience (specifically, RedHat, because open source meant possible to modify), and that they have a library of social science research.

When I got off the Delhi Metro and walked to their building, I found myself in a quiet area of Delhi. The complex is unassuming and not very guarded (how different from the experience of visiting more high-tech offices). I simply walked in and was taken quickly to the office of the one person I knew a name for, Mr. Ravikant (from the Sarai program). We had an interesting conversation about the Hindawi project and his studies of movies in Indian society, and then I headed off to the library.

The library is about 6 rooms packed with books, and when I arrived also hosted an art exhibit that took over much of the main room (and cut it in half, literally, via a diagonally placed window pane). Despite the whimsy of the room-sized exhibit, the mood in the room was rather serious. The library was run by an older man working on his PhD who pointed me at the room where I might find books on health and sustainability. I had less than an hour to explore it, so I moved quickly to pick out the most relevant books. I came downstairs, arms loaded, and was greeted by a frown and the information that I should be only picking up 4-5 books at a time. Undaunted, I started working my way through my finds only to learn 30 minutes later that the library was closing 15 minutes earlier than advertised.

In the end, I had time only to write down the references for the most interesting books, skim 2 or 3 of them, copy a few quotes, snap photos of a few pages, and so on. The collection was truly unique, with many books published in India or even self-published. I fear I will not be able to find many of these anywhere else. I end this post with a smattering of what I found.

After leaving the library, I ended up walking home beside a member of CSDS who works on media and journalism. His work attempts to translate information needed to improve the accuracy of indian journalism, and we had a long and interesting conversation about localization and stereotypes during my metro ride home (we overlapped for quite a ways). We had a very interesting conversation about his work on IM4Change and indian society overall. We talked about the difficulties I am having in developing an intuition for “india” and the fact that one reason for this is the diversity of who india is and where it is going — this requires a form of localized thinking that echoes the need to think at the individual level in assistive technology. It is not easy to hold on to both the specifics of one environment/context and also the generalities of a whole (and very diverse) set of societies/country. One interesting insight I gained from the conversation is to think about in what ways (and how universally) scarcity defines Indians. Overall, the visit was a reminder that I need to further immerse myself in Indian culture, especially rural culture, if I am to have anything useful to say about those settings. As we’ve learned in HCI, each user is unique. Similarly, in India, each locality is unique (there are 17 languages and over 800 dialects here, just to give a sense of the diversity of different regions across India). While good HCI eventually comes to conclusions that can generalize across users, it is often very effective to first get to know specific users very well. This becomes even more important when the user is foreign to the designer. I don’t know if I’ll get there in my short time here, but at least I have a sense of the road I need to travel now.

Relating to Sustainability:

ML Dantwala (1996). Dillema’s of Growth: The Indian Experience. Sage publications: Looked at agricultural policy; rural development. one chapter concerned with the adoption of high yield seeds.

Conservation for Productive Agriculture. published by the “Publications and Information Division; Indian Council of Agricultural Research; New Delhi. Ed: V.L. Chopra; T.N. Khoshoo: Articles contributed by scientists worldwide. Chapter on water conservation (#7, p. 98)  discusses india’s vast water resources

Rabindranath Mukhopadhyay (1999). Growth of Indian Agriculture: A study of spatial variation. Classical Publishing: Abridged doctoral dissertation. Statistics oriented

Mahmood Mamdani (1972) The Myth of Population Control: Family, Caste and Class in an Indian Village. Monthly Review Press, New York.

B. K. Pradhan, M. R. Saluja, S. K. Singh. Social Accounting Matrix (SAM) for India: Concepts, Construction and Applications. Sage Publications, New Delhi. Detailed modeling (input out put, and SAM ) for workers in india, exploring gender differences, etc.

Sumi Krishna (1996). Environmental Politics: People’s Lives and Development Choices. Sage Publications: Very nicely focused on India and environmentalism. Suggests at the end “Perhaps it is environmentalism that we need to redirect” Raises 4 areas of concern. “First, the environmentalist approach to a range of interlinked inequities, such as gender, caste, and class, seems to be limited because many environmentalists, despite their varied approaches, actually share ‘ideological roots’ with the very paradigms that are sought  to be changed” (e.g. “ecofeminism restricts women just as patriarchal systems do” … “Second, environmentalists have been largely unconcerned with the mechanics of establishing the decentralized institutions (like panchaayats) necessary to achieve sustainability. Centralised environmental management prgorammes … can have little chance of success, if they are conceived by administrators and technocrats, who may themselves be insensitive to the people in the environment … Third, the recognition that commercialization and market forces have a powerful corroding effect on the natural resource base does not mean that we should sentimentalize the traditional interaction of communities with their local environment. … the question is of choice and control – who determines the course of change? and of anticipating the consequences of change. And fourth, environmentalists have had little idea of how to create the necessary ‘value-orientation’. Values operate through interests. The strength of the environmental movement … mobilizing people who do not face an imminent threat is a much more difficult task … how can we build a base of shared values?”

Forests, Environment and tribal economy. Deforestation, impoverishment, and marginalisation in orissa. W. Farnandes, G. Menon, P. Viegas. Indian social institute, tribes of india series.  1988.  Looks at tribes and forests. Tribal traditions, causes of deforestation, consequences, official solutions (10) devolpemnt progammes and people’s solutions (11). Complements agarwal?

D. R. Sha (1985). An economic analysis of co-operative dairy farming in Gujarat.  Somaiya Publicatinos LTD:  Analysis of a specific market economy in gujarat…


Human Development Report  Uttar Pradesh — Lots of status on health spending & so on. Get the same for AP?

Tribal Health: Socio-Cultural Dimensions (1986). Edited Buddhadeb Chaudhuri. Inter-India Publications, New Delhi: Goes into great depth about medical anthropology in india. has a whole section on interaction of traditional and modern medical practices. Ch. 26 (p.  311- 321) deals specifically with the conflict between traditional medicine and a western program that was implemented, and how these interacted. “This study depicts the failure of state government health programs in motivating the Santals, whereas the health programs initiated through Sriniketan influenced the Santals in a positive way” (no surprise here!). In general the chapters in this book are short.

Sheila Zurbrigg (1984) Rakku’s Story: Structures of ill-health and the source of change. Printed by George Joseph, on behalf of the author! She is a canadian doctor. Sems to be an ethnography, very interesting if I can get it. Available from Centre fro social action, gundappa BLock, 64 Peme Gowda Rd. Bangalore, 560 006 or Sheila Zurbrigg, 1120 the parkway, london, ontario, n6a 2×3 canada.  Talks about the medical model of health and the fact that social factors (food distribution & access for example) have much more impact on overall health than individual disease, and in fact were responsible for improvements in world health before the germ model was even developed.

Om Parkash Sharma (2000). Rural Health and Medical Care in India (A sociological Study).  Manak Publications Study of the “modern healthcare system” in india, focuses on Uttar Pradesh.

J. P. Naik (1977). An alternative system of health care service in india: Some proposals. Allied Publishers Private Limited.

Meera Chatterjee, 1988. Implementing health policy. Manohar,  Centre for Policy Research, New Delhi. Policy focused. Looks at community participation in health care (chapter 5) and the role of the private voluntary health sector (6) spreading primary health technology (7). Life without food? (8).

Not specific to India:

Andrew Jamison. The making of Green Knowledge: Environmental Politics and Cultural Transformation. Cambridge University Press 2001. Not specific to India, but very interesting. Looks at the dilemmas of activism in  chapter 6 p. 147-176

Eco-Phenomonenology: Back to the earth itself. Edited by Charles S. Brown and Ted Toadvine. State University of NY Press. Also not specific to india. Has a chapter on Heiddigger 😛

Ecology, Politics & Violent Conflict. Mohamed Suliman (Ed).  ZED Books, 1998.  International perspective on conflict driven by environmental issues.

Isomäki (r.) and Gandhi (m.) (2004). The book of trees. Other India Press. Global look at trees, written and published in india. seems more manual than introspection.

Triangulating health content

Fitting together @_boris, Flickr
Fitting together @_boris, Flickr

Ever since completing my study of individuals with chronic lyme disease [1], I have been working on (and working out) ideas around several tools that I believe can improve the online experience of patients looking for information relevant to their condition. One of the surprising findings of our study was the extent to which the people we spoke with (most of whom had become experts in searching for information relating to their illness) triangulated data before trusting it. This goal of triangulating data was not just an individual act, but also a social one. For example, one participant reported how forum members  were reminded to provide multiple types of evidence for new information,

even regular posters, if they post about something that’s a little outside the [minority model] mainstream… they will say, ‘Do you have any studies to back that up? … why is that true for you?’

while multiple participants compared the type of evidence they were getting from different resources. We also found that people placed different amounts of trust in personal reports and research studies (some participants trusted one more, others trusted the other more), and that this was influenced in part by what they believed about their condition. All of this points to the importance of exposing information about where different viewpoints are found (across types of resources), helping people to judge the trustworthiness of online resources, and helping people to identify different types of resources when searching for information.

Unfortunately, I have struggled to find students who want to work on theses sorts of tools (perhaps a topic for another post), and our work has not proceeded as quickly as I would have liked. However, I was very pleased when a former student pointed me at the new site, Medify, which explicitly links research studies, personal reporting. Their page for Lyme Disease (or any other condition you care to search for) is a great example of how one might support triangulation. They link directly to studies about the conditions, list institutions, related conditions, and top treatments. They also include a patient community for sharing search results and discussing them. It’s great to see these things juxtaposed, and made so accessible (in terms of presentation). However, it would be nice to seem them take the next step and integrate patient-generated evidence and opinion into their presentation of information about conditions, treatments and so on.

[1] Jennifer Mankoff, Kateryna Kuksenok, Sara Kiesler, Jennifer A. Rode, Kelly Waldman (2011). Competing online viewpoints and models of chronic illness CHI ’11, pp. 589-598.

Health and Sustainability

Although much of this blog has been about travel, I also want to use it to take the opportunity to write about how my trip is influencing my research. I came to India hoping to explore two topics that are already a focus of my research. Although the funding fell through for one, and the class I had hoped to was vetoed (limiting one path to exploring the other), I am still hoping to learn something about both.

My first locale-specific research goal was centered on health care decision making. In the U.S. I begin a project exploring how individuals with a chronic disease cope with differing opinions on how to treat a condition that is (primarily) in their own hands. We focused this work on Lyme disease, and discovered that patients were shifting across two conflicting models of care over time, and that this process took place online. Our work (still in a U.S. context) also showed that patients developed a resistance identity during their shift from one model to the other.

India is an ideal place to take up this thread of research further. It is a country in which multiple models of medicine exist. In speaking with people here, the list they mention includes, at a minimum: Ayurvedic, Unani, English (Western Medicine), Naturopathy and Homeopathy. The different methods do not seem to overlap much. For example, when attending a first aid class, the discussion was entirely focused on western medicine. In contrast, the Ayurvedic doctor I took my daughter to when she had a high fever used almost not artifacts common to western medicine (not even a thermometer). Yet people I speak with seem to mix and match from across multiple models of care as they see fit. I would like to understand how and when people chose among them, and how this might differ across regions of India and different socio-demographic categories. I am currently reading the ethnography “No Aging in India” [1], which explores what happens to elders in a country where the responsibility of the family for elders is no longer a given. I would particularly like to understand how the differences in the social context of healthcare as well as the differences in what options a person chooses might affect the success of technological interventions such as those that some NGOs use to bring health care to rural communities.

My second locale-specific research goal is centered on sustainability. I have taken the opportunity to read quite widely on the topic in the last few months, touching on such diverse topics as economics (such as dematerialization [2]), futures studies [3] and biodiversity [4]). From these readings and ongoing thought I have developed a perspective on sustainability that argues for the value of information technologies in exploring a very broad set of issues from education to politics, in a culturally-relevant (but globally-focused) way. However, none of these readings is all that helpful in integrating the experience of being in a developing country into my understanding of sustainability.

For this I must better understand the experience of living in India, again across both regions and socio-economic classes. My personal experience is one of a country that is more careful with energy than the west (every plug, for every appliance and wall element has a switch off, for example, and is switched off if not in use). Among the upper class, high-tech individuals I have come to know, sustainability and environmentalism are common, and very important. In helping with a clean up of a local natural preserve, I witnessed the organizers pledge the students who came to help them to continue taking care of their natural environment. In Agarwal’s study of forestry management in rural India [5], environmentality (as he calls it) develops only through personal involvement by individuals and in fact is affected negatively by governmental involvement of the wrong kind. Even assuming universal environmentality within India, the question still remains: what is the right future for India (and for each of the countries in the developing world)? How in the world do we move forward, continue to develop, and simultaneous address the climate crisis? If we put aside the simplistic assumption that developing countries should somehow not develop, the alternative must be a leapfrogging of the most egregious technologies used in recent history in the first world, combined perhaps with a designed recent ion of cultural elements that enable a more sustainable lived experience.

While my prescription for success is grand, as we often say in research, the devil is in the details. And I cannot speak to the details with what I know yet, I am hoping that some of the nascent collaborations I am developing here, combined with user research, will create a beginning.

[1] Cohen, L. (2000). No aging in India: Alzheimers, the bad family, and other modern things. University of California Press.

[2] Luzzati T. (2001). [PDF] Growth theory and the environment: How to include matter without making it really matter. In Salvadori, N., The Theory of Economic Growth: A Classical Perspective.

[3] Bell, W. (2003). Foundations of Futures Studies: Human science for a new era: History purposes and knowledge (volume 1). Transaction Publishers.

[4] Pimm, S. L., Russell, G. J., Gittleman, J. L. & Brooks, T. M. (1995). The future of biodiversity. Science269(5222):347-350

[5] Agrawal, A. (2004). Environmentality: Community, intimate government, and the making of environmental subjects in Kumaon, India. Current Anthropology, 46(2):161-190.