Tag Archives: privacy

App-ography: A critical perspective on medical and health apps


www.flickr.com/photos/alf/200290221/ by alf eaton + commons.wikimedia.org/wiki/File:Anatomical_position.jpg by Connexions (cnx.org/content/m47807/latest/)

All My Apps by alf eaton +
Anatomical Position by Connexions

I have been thinking and writing about mobile apps recently and how they are used for medical and health purposes. Millions of apps designed for smartphones, tablet computers and other mobile devices have been developed since their first appearance in 2008. Many of these are health and medical apps. In mid-2014 there were over 100,000 health and medical apps listed in the two major app stores, Apple App Store and Google Play, and new ones are being issued every day.

Several health and medical apps feature on Apple’s lists of popular apps, and download figures provided by Google Play show that some health and medical apps on their store have been downloaded hundreds of thousands or even millions of times. In late 2012 a Pew Research Center survey found that 85 per cent of American adults owned a mobile phone. Fifty-three per cent of these were smartphones, and one fifth of smartphone users had used their phone to download a health-related app. The most popular of these apps were related to monitoring exercise, diet and weight. A more recent market research study found that almost one-third of American smartphone users (equivalent to 46 million people) had used apps from the health and fitness category in January 2014Public health researchers have sought to evaluate their use in health promotion campaigns and gathering data on health-related practices. But few researchers have investigated the broader social, cultural, political and ethical dimensions of medical and health apps.

Healthcare practitioners and administrators are also increasingly using apps as part of their professional practice. Hundreds of apps have been developed by hospitals and other healthcare providers. A growing number of medical schools are now offering at least part of their education via apps and require their students to own a tablet computer. In one study that surveyed American doctors, more than two thirds said that they used apps as part of their work. Another survey of medical students and junior doctors in a UK healthcare region found that over half of both students and junior doctors had medical-related apps on smartphones, with apps for medical education purposes the most popular. The medical literature now often refers to ‘prescribing’ apps to patients.

Despite the ever-increasing popularity of apps, very little academic research focused on these devices has been carried out in the social sciences and humanities. Numerous market research reports and medical journal articles have been published that provide some quantitative data on their content, accuracy and use, but these are largely instrumental and descriptive rather than critical.

Apps are digital technology tools, but they are also sociocultural products… active participants that shape human bodies and selves as part of heterogeneous networks, creating new practices and knowledges.

In recent years I have been interested in developing a research agenda in critical digital health studies, including research into medical and health-related apps. I adopt a sociomaterial perspective drawn from science and technology studies to investigate the digital health phenomenon. From this perspective, mobile apps, like all technologies, assume certain kinds of capacities, desires and embodiments; they also construct and configure them. Apps are new digital technology tools but they are also active participants that shape human bodies and selves as part of heterogeneous networks, creating new practices. Indeed apps may be viewed as sociocultural artefacts, the products of human decision-making, underpinned by tacit assumptions, norms and discourses already circulating in the social and cultural contexts in which they are generated, marketed and used. As they not only present information and health and medicine but also often invite users to generate and share digital data about themselves, apps participate as actors in the digital knowledge economy.Read More… App-ography: A critical perspective on medical and health apps

Measurements: The Qualitative Work of Quantitative Work


Katie Pine

Katie Pine

Max Liboiron

Max Liboiron

Editor’s Note: and continue this week’s theme of makers, hackers, and engineers with a post about the politics and performativity of measurements, central to the practice of many engineers and scientists.

(@khpine) is a postdoc in Intel Labs Cultural Transformation Lab, and is currently in residence at UC Irvine.  Katie’s work bridges Computer Supported Cooperative Work, Organization Studies, and Science & Technology Studies.  At present her NSF-funded research examines micro-foundations of IT-enabled accountability policy and practice in the healthcare domain.

(@maxliboiron) is a postdoc at Northeastern University’s Social Science Environmental Health Research Institute (SSEHRI) and a co-founding member of the Superstorm Research Lab, a mutual aid research collective. Liboiron studies “techniques of definition,” the tools and practices used by scientists and activists to make emerging, contested, amorphous forms of environmental harm manifest.


From common core to quantified self, measurement is increasingly part and parcel of our daily lives.  We use number-driven measurements to make visible, manage, and regulate increasingly nuanced aspects of daily life, work, public institutions, and our environment.

However, measurements are never mere faithful representations of nature, but have social and political origins and ramifications.  We are exploring two aspects of measurement that often go unnoticed: first, the situated, complex work that goes into making measurements work in the first place (and the fact that this work is inherently social, cultural, and political), and second, the idea that measurements themselves can be seen as performative, creating and re-creating the very things they are intended to make visible.

Representational theory defines measurement as “the correlation of numbers with entities that are not numbers,” a process of transformation, translation, and even interpretation at the level of sampling and gathering data. What is selected for measurement and what is not, how measurements are standardized, what counts as an important unit of measure, and how measurements are used all have stakes for the systems of which they are part.

Moser & Law (2006) argue that current metaphors for information as “flow” are inaccurate, as these metaphors presume that information is immutable, something that is created and exists in the world and thus can be taken up, passed around, and used for calculation.  Moser and Law instead argue that we can see information as something that is inherently mutable and relational, that changes its shape as it is circulated and used.  To put it more simply, information never fully has meaning on its own – it becomes meaningful and usable when a particular person or group make decisions about what the information is and how they can use it.

binarycounting01

A good example comes from a recent study on counting rates of infection in hospitals (Dixon Woods et Al., 2012).  The authors found that an act as seemingly simple as counting infections was actually highly social and cultural – the answer to the question “what counts?” varied widely from one hospital to another, calling into question the current focus in healthcare (and investment of healthcare dollars) on quality measures as a tool for achieving reforms such as infection reduction in practice. Making meaning of numbers requires acts of both calculation and judgment, what Moser & Law call “qualculation.”

Read More… Measurements: The Qualitative Work of Quantitative Work

Falling in: how ethnography happened to me and what I’ve learned from it


guest author Austin Toombs

Austin Toombs

Editor’s Note: Austin Toombs (@altoombs) brings a background in computer science and a critical sensibility to his ethnographic research on maker cultures.  He explores the formation of maker identities in his research, focusing on how specific sites such as hackerspaces, makerspaces, Fab Labs, and other co-working spaces intersect with the politics of making, gendered practices, urban vs. rural geographies, and creative hardware and software developments. Austin is a PhD student in Human Computer Interaction Design in the School of Informatics and Computing at Indiana University. He is a member of the Cultural Research In Technology (CRIT) Group, and is advised by Shaowen Bardzell and Jeffrey Bardzell. He is also a member of ISTC-Social.


My research as a PhD student began by looking at cultures of participation surrounding hobbyist programming. I was—and still am—interested in the fuzzy-gray area between work and play, and as someone who misses the puzzle, thrill, and flow of programming, these communities were great starting points for me. Working on this research led me, almost inevitably, toward my ethnographic work with my local hackerspace and the broader maker community. In this context, I have seen how this local community embraces the work/play ambiguity, how it can function primarily as a social environment, and how it works to actively cultivate an attitude of lifelong, playful, and ad hoc learning. In this post I explore the role ethnography played in my work and how the ethnographic approach helped me get to these insights. I also discuss some of the complications and issues I have run into because of this approach, and how I am working toward solving them. For more information, feel free to contact me!

hackerspaces

the role of ethnography in my work

My first encounter with the concept of a hackerspace came from my initial research on hobbyist programmers. I remember nearly dancing with excitement when I realized that the city I lived in happened to have a hackerspace, because I knew immediately that I would be joining them in some capacity, if not for research, then for my own personal enjoyment. The first few visits to the space were exploratory; I wanted to see what was going on, how the members and regular attendees interacted with each other, and whether or not this seemed like a good fit for my research.

My initial goal was to use the site as a potentially endless supply of case studies to explore my questions about work and play. Thankfully, I realized fairly early on that this case-study-first approach would not work for me. Instead, I found myself drawn to the overall narrative of the hackerspace and its members. How did this particular maker community form? What did the members do for their day jobs? How did they become ‘makers’? What do they think about themselves, and how has becoming a member of this community influenced that?

Read More… Falling in: how ethnography happened to me and what I’ve learned from it

Studying Up: The Ethnography of Technologists


Nick Seaver

Editor’s Note: Nick Seaver (@npseaver) kicks off the March-April special edition of Ethnography Matters, which will feature a number of researchers at the Intel Science and Technology Center for Social Computing on the forefront of exploring the cultures of hackers, makers, and engineers.

Nick’s post makes the case for the importance of “studying up“: doing ethnographies not only of disempowered groups, but of groups who wield power in society, perhaps even more than the ethnographers themselves.

Nick’s own research explores how people imagine and negotiate the relationship between cultural and technical domains, particularly in the organization, reproduction, and dissemination of sonic materials. His current project focuses on the development of algorithmic music recommendation systems. Nick is a PhD candidate in sociocultural anthropology at UC Irvine. Before coming to UCI, Nick researched the history of the player piano at MIT. 


When people in the tech industry hear “ethnography,” they tend to think “user research.” Whether we’re talking about broad, multinational explorations or narrowly targeted interviews, ethnography has proven to be a fantastic way to bring outside voices in to the making of technology. As a growing collection of writing on Ethnography Matters attests, ethnography can help us better understand how technology fits into people’s everyday lives, how “users” turn technologies to unexpected ends, and how across the world, technologies get taken up or rejected in a diverse range of cultural contexts. Ethnography takes “users” and shows how they are people — creative, cultural, and contextual, rarely fitting into the small boxes that the term “user” provides for them.

But ethnography doesn’t have to be limited to “users.”

Engineers in context. cc by-nc-nd 2.0 | http://www.flickr.com/somewhatfrank

My ethnographic research is focused on the developers of technologies — specifically, people who design and build systems for music recommendation. These systems, like PandoraSpotifySongza, or Beats Music, suggest listening material to users, drawing on a mix of data sources, algorithms, and human curation. The people who build them are the typical audience for ethnographic user studies: they’re producing technology that works in an explicitly cultural domain, trying to model and profile a diverse range of users. But for the engineers, product managers, and researchers I work with, ethnography takes a backseat to other ways of knowing people: data mining, machine learning, and personal experience as a music listener are far more common sources of information.

Ethnographers with an interest in big data have worked hard to define what they do in relation to these other methods. Ethnography, they argue, provides thick, specific, contextualized understanding, which can complement and sometimes correct the findings of the more quantitative, formalized methods that dominate in tech companies. However, our understandings of what big data researchers actually do tend to lack the specificity and thickness we bring to our descriptions of users.

Just as ethnography is an excellent tool for showing how “users” are more complicated than one might have thought, it is also useful for understanding the processes through which technologies get built. By turning an ethnographic eye to the designers of technology — to their social and cultural lives, and even to their understandings of users — we can get a more nuanced picture of what goes on under the labels “big data” or “algorithms.” For outsiders interested in the cultural ramifications of technologies like recommender systems, this perspective is crucial for making informed critiques. For developers themselves, being the subject of ethnographic research provides a unique opportunity for reflection and self-evaluation.

Starbucks Listeners and Savants

Among music tech companies, it is very common to think about users in terms of how avidly they consume music. Here is one popular typology, as printed in David Jennings’ book Net, Blogs, and Rock ‘n’ Roll:

Read More… Studying Up: The Ethnography of Technologists

Tell Me More danah boyd: an interview with the author of “It’s Complicated: The Social Lives of Networked Teens”


MSR3sm-sq danah boyd (@zephoria) is a Principal Researcher at Microsoft Research, a Research Assistant Professor in Media, Culture, and Communication at New York University, and a Fellow at Harvard’s Berkman Center. In 2009 Fast Company named boyd one of the most influential women in technology. Also in 2010, Fortune named her the smartest academic in the technology field and “the reigning expert on how young people use the Internet.” Foreign Policy named boyd one of its 2012 Top 100 Global Thinkers “for showing us that Big Data isn’t necessarily better data”. danah just published, It’s Complicated: The Social Lives of Networked Teens.  

There’s this idea that hard-core techies are code geeks. But hard-core techies also look like ethnographers. A tech ethnographer not only has to understand cultural code, but the mechanisms for how software design links back up to tech practices. I sat down with one of the most well known tech ethnographers of our time, danah boyd (@zephoria). 

Over breakfast at The Ace Hotel’s Breslin, danah and I talked about her career. This fascinating and personal interview reveals danah’s journey through industry and academia.

We’re also excited to have danah’s interview launch Ethnography Matter’s second column, Tell Me More,  featuring interviews with people who are pushing the boundaries of ethnography in unconventional and exciting ways. We conduct the first interview and then post a follow up interview with crowd-sourced questions from the audience. 

Post your follow-up question for danah in the comments or tweet it with the hashtag #askdanah by March 10. danah will select her favorite questions to answer in her second interview!  

Tricia: danah, I’m super excited that we get to talk ethnography over some yummy breakfast food! Earlier last year, you were inducted into the SXSW Hall of Fame.  An ethnographer being validated by geeks! I was beyond excited when I heard this news. How did you feel when you found out?

danah: SXSW has been a very important event to me for a long time. I learned so much about the tech industry through that conference by spending late nights drinking with entrepreneurs and makers. I actually got many a job that way too. It was at SXSW where Ev Williams and I started debating blogging practices. He hired me to work for him that summer.  Oh, and SXSW was where I met my partner.

Tricia: What? Are you serious?

danah: ::laugh:: Ayup!  And now we have a baby who we’re taking back to SXSW this year.

Tricia: Shut up. That is so sweet. Where did you guys meet at SXSW?

danah. At a Sleater-Kinney show.

Tricia: That’s awesome.

danah: It’s just funny to be honored there because I’ve selfishly gotten so much out of the conference.

Tricia: Well I remember very clearly when I read the transcript of the keynote you delivered at SXSW in 2010. It was about Facebook’s issues with privacy. Your talk generated so much discussion. How did you settle on this topic?

danah: I thought, what could I do that would provoke this audience to think? I saw it as a political platform; not big P but small p. I wanted to use this opportunity to challenge norms inside tech industry. I decided to take on the underlying values and beliefs in tech industry regarding privacy because my research was showing that the rhetoric being espoused was naïve. My topic was not surprising for academics, but it was for practitioners.Read More… Tell Me More danah boyd: an interview with the author of “It’s Complicated: The Social Lives of Networked Teens”

The ethics of openness: How informed is “informed consent”?


SteepRavineEditor’s note: In this final post for February’s ‘Openness Edition, Rachelle Annechino takes us on a journey with her to the homes of her research participants and asks some really important questions about the wild “foreign languages” (legalese/medical-ese) that supposedly produce “informed consent” and the genesis of our understanding and practice of informed consent, and challenges us to think about how we might redesign informed consent in our own projects. 

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One open window (Chris Downer) / CC BY-SA 2.0

One open window (Chris Downer) / CC BY-SA 2.0

Today I’m interviewing a couple of people who participate in a free program offered through a local hospital. The program mainly serves older adults who are dealing with a range of health issues, like diabetes, cancer, and arthritis. Many of the participants belong to groups that are affected by health disparities (or “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations” as defined by the US CDC [1]).

After hanging out at the hospital for a bit to check out the program, I go to the home of a woman in her 60s who couldn’t come to the hospital today. We talk about the study, its risks and benefits. It’s a small exploratory study, some semi-structured interviews; the hospital IRB gave it an expedited review.

The benefits, I explain, are that this might help improve the program or keep the program going. There aren’t really any direct benefits to you though. We wish we had something to give you to thank you for participating. Basically what we’ll do is just sit here and talk. A risk is that some of the questions could be uncomfortable, but we can skip anything you want. If it’s okay with you, I will record the interview. We won’t put your name on the recording or use your name in reports on the interviews.

We have this standard consent form that the hospital uses, I say. It’s kind of long. We can go over what’s in it together, and please feel free to take as much time as you want to look it over…

Et cetera. As I’m saying this stuff, I’m cautiously drawing out the consent form.

Which is eight pages long.

And crazy.

Read More… The ethics of openness: How informed is “informed consent”?