Community Conversation: Trust, Privacy, and Internet‑Connected Devices
102221
Captioner Trish Messinger

 
This text is being provided in a rough draft format.  Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. 

 
SCOTT:  Hello and welcome everyone.  We've made it to almost the end of the conference.  I'm Scott and the facilitator for the training to day.  Thank you all for joining us for Community Conversation: Trust, Privacy, and Internet‑Connected Devices.  I want to mention a few housekeeping items before we get started.  First off, if you scroll over on the screen, a menu bar pops up ... ... you can view captioning by selecting the CC tab on the menu bar.  
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>>:  Hey everybody, thanks so much for joining us today.  I'm app associate professor at the William and Mary school of education.  And I'm an African American or black female and I let's see, one more thing that I would like to share.  I do want to tell you a little bit about our slide.  So on our slide at the top in the left hand corner there is a symbol for CC I.  So that stands for the common wealth cyber initiative and our project was a part of that and Dr. Dillon it with cower who will ... of CC I.
So Dillon I'll turn it over to you
>>:  Hi my name is Dillon ki ttkower, a professor of philosophy at ... I'm a white male.  Graying beer, I'm wearing a sort of work bowling shirt kind of thing.  And I have a whole bunch of do you think laicallies and a couple ban goes on the wall in back of me.
I'm be joined joined in this presentation by Martin who's a gray cat who always stands in front of me when I'm in Zoom meetings but doesn't actually like being held so his tail will be moving back and forth in front of me.  F and we're doing all of introductions at the beginning, right, Stephanie?
>>:  Yes.
>>:  And then yeah the my grad research assistant Hannah worked with me on the theoretical piece here that the two of us will be presenting.  Let me pass it oh to her to introduce herself.
>>:  Hi, I'm Hannah.  I'm a graduate student at Virginia tech in science and technology studies.  And I'm a white woman with brown hair and identify some paper stars on the wall behind me and I use she/her pronouns.
DR. BLACKMON:  And then we will turn it over to my graduate assistant ... my pronouns are also she/her, hers.  So I'll turn it oh to tiara now.
>>:   ... I'm a graduate assistant at William and Mary.  And a current Master of public health student at George Washington university.  And I'm a black woman with curly hair and glass and I use she/her pronouns.
DR. BLACKMON:  All right.  Great so we will get started now with telling you a little bit more about the project.  So if we could go from ‑‑ thank you to slide 26789 so our full research team in addition to Dillon, Hannah, tear yeah ra and me, we have a broader research team that includes professors from computer science and engineering as well as graduate and undergraduate students who are from those areas as well.
So we just want today give you an idea of the enter disciplinary of the team and all of the different components that went into the data that we're going to share with you today.
Third slide please.
So I want to tell you as well a little bit more about our project.  So we will be talking about today is research that we did on trust and internet connected devices in the disability community.
For the second phase of that project, we actually partnered with APRIL which is why we were so excited to get an opportunity to come and share out with you today some of the findings we have from that research.  In addition to that we want this to be an opened conversation which is why we referred to it as a community conversation.  And get your feedback.
So as we were doing the project, again we wanted to focus on trust and privacy with internet connected device use in the disability community.  And I think it's important to state that going into the project, we fully understood that the disability community is just as diverse as any other community and that feedback from a few people us not speak to the experiences of all people.
I also think it's important to note that we went into this with wanting to explore from a perspective that we didn't think was very well represented related to technology and development of technology.
So our focus then was very much community practices that fostered justice in inclusion.  And we also wanted to do an in depth exploration of this topic across 3 area, the first being empirical, second philosophical and the third will be the technical.
But again our approach here was to learn and then to share.  Not to box people in to these very limiting definitions of who they are and their experiences and also to be mind.  Of intersectionality of these various experiences too.
So our sources of data for this project included several areas.  The first was data from surveys so the first entry ... had were those surveys where we learned more about their general experience with technology as well as some of the devices they were using.
After that, we conducted 3 focus groups where we got to hear from participants in groups about their experiences with trust and privacy and enter next connected devices so we were talking about everything from a Mac book to an iPhone or a Samsung phone or an Alexa device so any number of enter innocent connected devices ... then we had over 200 journal entries also from participants where they would journal about their experiences with these various technologies.
So some people could journal for a week, some people would journal for several weeks.  So just to give you a sense, when we start to talk lar apply in the empirical section and then also in the philosophical section, in the empirical section we've looking at the data from the surveys T focus groups and also the journal entries.  And men the philosophical component, that comes from the journal entry then other work that Dillon and Hannah were doing.
And so with that we'll turn it over to Dillon and Hannah to talk about the philosophical part.  Next slide please.
>>:  So in the theory steam or the philosophical area of this project, the Stephanie and I did ‑‑ well he did the interviews, I (laughing) hang around doing the interviews and asked a couple yeses with the disability service providers and nan and I did lit review to hook at how trust is being talked about in different fields.  And human computer interaction and engineering.  And then we started doing a topology of trust relationships in particular in a disability context.
And we'll share some of that work.  And we've been writing that up and presenting at a few conferences and we've got another one next week with I triple E, which is a major engineering conference. ... it's there and it will be in the video if anybody wants to go back it to.
So to represent some of what we ‑‑ what our findings are in theory, I'll share a few things from the field of ... and then I'll happened it over to Hannah, share some of the stuff that she's been working on.
So, yeah, within post ... which is a theory about or maybe it's better to say it's a series of methods of inquiry about how our experiences structured, especially in relationship to technology, we wanted to look at how particular technologies that are 'em me Mac of and balloon shall in disabled lived experience results in a different kind of lived experience of trust than abled people are likely to, more likely to have.
So two of these for example is embodiment relationships so these are relationships where there's a kind of technology that welcomes a sort of physical extension of the self, so common examples there are eye glasses or I mean even clothing or shoes are embodiment technologies, things that p.m. like part of our bodies.  And within disability, lived experience.  So someone examples there are like wheelchairs or braces of other sorts of supports or hearing aids.
And there ‑‑ they're sort of the dominant model for trust is reliability.  Where trust means being able to depend on something, just means as opposed to many other things that we use, trust to mean in different kinds of contexts like, well, I mean like in a her me nuke ... in the way we read and interpret things.
So we have all sorts of technologies that represent the way we're reading the world, even something like printed words that's a her me nuke technology. (reading verbatim) or another common comfortable is a thermometer.
So here 'em me Mac ... include things like pulse ox sim terse or blood pressure cuffs or like this in the I OT context things like Fitbits and these ways we read our own bodies.  As well as things like better more directly language like, like rail or close captioning.
And so there is this trust in these kinds of technologies was trust assevers raty, being true to what it represents.
So that gives us an idea of the idea that mental rules that disabled users are more likely to have because of the distinctive elements of living experience.
So we can move here the slide 7 and hand it over to Hannah.
>>:  All right so when we were looking at the literature, we tended to find that many people in design and engineering context were looking at trust from what we call a solutionist standpoint, which means they tended to talk about trust as a function with pretickettable inputs and outputs.  So for example if I performed these behaves, I will gain the trust of my user, but the problem is when you're thinking about trust in this way, you're thinking about your users as problems in need of solution.
And this is problematic particularly when we're talking about marginalized communities and here disabled communities who have a history of having a history of complying with experts who are not nestly worthy of their trust and who may in fact use technology to control or even eliminate them.
So you can go on to the next slide.
So we proposed that in fact it's inherently untrustworthy to expect trust based simile on a display of so‑called expertise or an expected disparate of knowledge between one party and the other which often happens when we're dealing with technology and disability that doctors for example think they are the expert on this person when in fact that person is the only expert on their lived appearance and is the only person who should be culted, the first person anyway who should be culted on what they wish to do and what ...
Without having an expectation of trust.  And regardless of the state of the relationship between the designer and the expected trustee, we need toe behave in a trustworthy way, even if we don't have that trust now and even if we can't expect to have that truth in the future and maybe that's the way we can truly act in a trustworthy matter in these contexts.
>>:  Ready for slide 9.  Okay.  And this Dillon again.  We're finishing write something up.  We're going to be presenting it next week, please excuse the sound of my e‑mail (chuckling) at an I triple E ethics conference to a whole bunch of engineers and then hopefully publishing it in an engineering journal to try to inference how design of these ... is actually done.
So there's I'm not reading everything on the slide, that's all there in and a recording if you want detail.  And I'll hand this back to Stephanie.
DR. BLACKMON:  So now we'll move into the empirical phase of the conversation on slide 10 and tear yay ra will start us off with a conversation about that.
>>:  Hi everyone this is Tiara, so after analyzing our data from surveys and focus groups and journals, we found several personal benefits of using technology among disabled communities.
And so some of the main things we found were that technology provided individuals with a greater sense of independence particularly for those with different physical aboutties.
So being able to do things as simple as turn off lights or call another individual without needing the assistance of another person greatly increased their sense of independence and their sense of safety in their own homes and elsewhere so we thought that was particularly notable and important.
Technology was also able to provide assistance based on specific abilities so for example if a person needed assistance while writing an e‑mail to someone else, having the technology that's able to do things like talk to text was again particularly impactful and specific to different abilities.
A lot of apps that were mentioned from in our studies were often specific to different neuro diverse communities and that was a big game changer for different people, particularly as they came out of ‑‑ came from different backgrounds.  And that really was able to make sure that they had the ability to not necessarily overcome their different abilities, but really integrate those technologies and applications to their their own life as a life sometime vs. a solution.
And then technology often allowed individuals to build deep and meaningful connections with other, particularly when they are physically disState Hospital, whether that's because of a pandemic for example or because they just lived in another city, technology really promoted the aboutty to maintain a healthy social and emotional life.  And that was particularly important for a lot of our participants.
DR. BLACKMON:  This is Stephanie so just as Tiara mentioned there were a number of both permanent and communal benefits that participants shared.  However as they used that technology, what they also expressed both in the focus groups and in the journals was a growing concern over the trust and privacy issues with technology.
So participants would say things like I'm give you an example, so one participant ‑‑ can I'm using pseudonyms here, we don't use real names.
So quell talked about the difference between collaborating with technology on a project where the technology was connected to a university vs. collaborating on technology that was not connected in that way.
So there were these growing concerns about where the data was going when the technology wasn't attached to a trusted source.
And even when participants felt like they would get pop ups about information related to privacy or data use on their devices.  They still dependent feel absolutely sure that they knew where any of that information was going.
So as they continued to use the device T concerns about privacy continued to grow.
I think about Richard, another participant.  And when Richard was using the technology particularly location services, he thought that on one hand the technology was really helpful, but then there were all of these instance where is he started to feel trappened by the device at times when he did not want to engage that way and that made him more concerned about his privacy and the trust of the device that he was using.
So several examples like that where even though participants see the benefit and experience ‑‑ can experience the benefit of the technology, that as they continued with certain devices, certain technology, that their concerns over trust and privacy continues to grow.
So the question for us then particularly in H setting is what are some things that we can do about that.  So now that we know this information.  Now that we have some‑the this information, what do can we do in order to address both these really beneficial aspects of technology but also some of these more concerning aspects of technology.
So a few action items.  I know from talking with Mary and Sierra that what happens with some of the independent living facilities is that there's a conversation when a technology is going to go on lone for example or when devices are being suggested that someplaces are already doing this first point.
Which is to think about essentially a cost benefit analysis when suggesting internet connected devices.  So not only understanding the need for the device, but also going that extra step of talking about what the device will mean for trust and privacy, what does using this device mean for my data.  How much of that data has to be given up.  How much of it is no longer private nah way that you think is going to be private.
Also the transparency of the terms and conditions for a particular device throughout the study.  Multiple participants mentioned the importance of plain language with terms, conditions and privacy policies.  And kell in particular talked about going on an laptop play a game because the app also used third party providers, there were 5 separate terms and conditions the policies, that they would have to read just to play the game.
And so not only is there this concern about the transparency of those when they're not written in plain language, but also the concern about having so many of them.  And this is an issue that a lot of people in general have talked about, when you look at the literature on technology and when you look at the literature on technology specifically numerous people have brought up the terms ... are not structured as if they want people to what happens their rights are.
So this push for plain language with those shows up in the literature and it showed up in our study as well.
So some transparency around the terms, conditions, and policies for a device.  So if these terms aren't clear, what do I lossly by‑not using this device?  Well what do I gain by using this device even if the policies are not as transparent as someone would like?
And then the third point under that cost benefit analysis is is there a similar device that offer it is same benefits with greater transparent so I'm go back to that example with quell again.  There was a situation where they felt comfortable using the technology and collaborating.  That was very different from this outside way of collaborating.  And so thinking about the balance there, thinking about, okay, this is what I want to achieve with this particular device, now how do I either use this one or find another that offer mess the same benefits with a little less cost on the privacy side.  Where the cost is a bit less on the data side of things.
And then the second point is a technology check in to address concerns with continued device use.  So had the interactions with the device change since the first use of the device.  Have those changes shifted the trust and Privacy for the device.  And is the user okay with the shifts that that have half happened with trust and Privacy.
So this recommendation also comes out of the data that we collected.
A couple of participants mentioned how they would do updates and the phone would default to something as a result of an update.  On an iPhone for example if something was turned off initial they they were worried with the update that it would be turned on or that the default for a system is to have all of the location device T voice activated device, all of those programs rather to have all of those programs turned on automatically and then they would have to go in and turn them off.
So thinking about up days and that the updates to a device can change about privacy and trust.  And it's possible that the user is going to say, oh no, I I'm absolutely fine with this or I think this is helpful.  But having that check in provides some consent related to that, that people at least have a say in how they continue to use the devices and if the devices work for them in a way that's still beneficial.
So these are just two action items if people are looking for ways to say, well, okay I want to help people I work with learn more about trust and Privacy with their devices, here are two things that can be helpful for doing that.
So with that, we'll stop and open it up for questions.
SCOTT:  Just a reminder if you want to leave a question H you can do it in the Q & A part, or you can raise your hand and we can recognize you and unmute you so you can participate.
>>:  We to have one question in the Q & A, Scott do you want to read it.
SCOTT:  Sure the question is I'm wondering how do you see yourself using the information you've collected?
DR. BLACKMON:  So great question.  One ‑‑ so at the beginning I talked about the empirical, philosophical and then technical components of the work.  So one of the ways that we have already started to use this information is through the preliminary development of a privacy enhancing app.  So a part of our project included this phase of data direction we talked about but then also wopping an application that would help people to make more informed ... and long‑term that's work that we've been doing because it's a part of our research area.  So when we're giving feedback or when we've working on various proceedings related to technology, the things that we have gleaned through this work often come up as a result of that, we're saying this is how we want to move forward, then here are some things we need to consider.
So the data is going directory back into the technological development process and that was important for us at the outset of the project that we one make sure that our practices and interactions with people matched with what we were trying to share with people so that as we engaged we weren't forgetting about the importance of trust and privacy on the way to getting that information.
And then the other part of that was really again shifting technological development, that it is important to us that peoples' practices change related to how technology developed P how it is use.  We believe there are much more inclusive ways to do that, ways that account for a number of things that participants brought up in the study so that is what we've been trying to do and hope to continue to do.
>>:  Dillon ‑‑ I can say something.  To the first question as well on use of information, and here it's maybe a different way of reading the question, which I hope is useful, where instead of thinking about information to mean like the data collected, but to think more broadly about information about what we've learned.  And I don't know which of these is more accurate to the intense of the question (chuckling) but the thinking about this from the theoretical stream, what we are trying to do with what we've learned through this process by presenting this and publishing this in engineering journal is to try to influence the way that engineers think about disabled people about designing and hoping to get them to think in a better and more inclusive way about design and about disabled experience.
And I can say that in the past I have presented on and published some work on anti‑discriminatory design practices that focus on race and gender.  And that I know that those publications you know it's hard to know how much they influence engineers in the field but I know they have been used in classrooms to teach engineer students and I hope H the future try to bring some of that out into the field through consultants and things like that.
So that's maybe a different kind of answer and hopefully a interesting one, a useful one.
DR. BLACKMON:  Dillon to you want the say a few words, how consumers might use the app too so since you were on the subject I thought it would be good.
>>:  Right yeah.  So that app, I don't know where it is in the process right now with the technical team.  The idea is that the app would be there as a place where you could check in to see what in plain language (laughter) an app that you were considering downloading is going to actually do.
So it's a distant reading app where instead of having to read close closely through the terms of service, it will summarize ... about the apps terms and policies and give it a sort of simple even maybe even like red yellow green kind of this looks problematic, this looks okay, it's hard to tell about this one, so that it would be like an interactive guide for the user to be able to find out about their concerns with apps before installing them.
And then that would be sort of base function and in the future it could be built on but that's the base function.
DR. BLACKMON:  And tire I can't remember yeah I know you can share a little bit about this as well.
>>:  Sure, first I was just going to just quickly go over a comment that was left in our Q & A.  One of the participants mentioned they have been receiving a lot of spam calls this year.  And so we just wanted to acknowledge that and I responded to it saying that that's terrible.  I'm really sorry to hear that your house has been seemingly targeted for spam calls.  That is extremely problematic.
But in regards to the app, I can talk a little bit more, not necessarily about the specification of the app design, but in general what the app is supposed to do is actually take account of the you can add the different devices that you permanently use in your home to the app and it will have a sort of dB of the terms and conditions that that device and/or apps elsewhere have publicly available.
So it reviews those terms and conditions and comes back and tells you what may be problematic about that device so it essentially gives it almost a grade for privacy and trust based off of the current terms and conditions that are available about that device.  Point of fact's a very quick way to identify whether a device maybe should be considered less trustworthy than you may have originally thought based on the prior scanned terms and conditions and privacy policies.
DR. BLACKMON:  Thanks Tiara, and I did want to go to pat's response about the issues with the robo calls.  So one of the things that came up for participants in the study A similar thing, was related to all of these unwanted solicitations.  And people end up on lists and they don't know how.  They have done do not call, all of these ways in which information just starts to floe float around and it's one of the things that we also feel so important about this research because to your point, pat, there's a fear with what you just shared.
This fear that someone is rushing to phone to answer it and it's just a spam call.
So thinking about how information is shared and shared and shared and some of it comes up in these privacy policies, in these terms and conditions where there will be a comment that says, oh, well and just so you know, we might sister this with other people who we're affiliated with.
And then it just goes on and on from there.  And so it's another part of why we think that plain language for terms and all of these oh components are so incredibly important.
So that people get more of a say in what's happening with their information, that people are at least away when their signing up for something that there's the potential to get ten calls a Kay on their home phone or something so they can have more say so and whether or not they want that to happen.
So thanks for sharing that experience, pat.  It is one that a lot of people share through the study and a concern that is just very prevalent particularly with the way data is shared around.
So our next question is about what we would say the biggest thing we found out or that surprised us in the journal.  So I will ‑‑ I have lots of things because as Dillon mentioned in addition to being on those 20 market research interviews, I also did the focus groups and then did the work with the participants for their journal, so I will save my comments and then other people can chime in, other members of the team.
>>:  I actually wanted to share something from our interviews with disability service providers.  So this is in the spirit of appsing the question, even though it's not actually literally answering the question.  So (chuckling) I hope that's okay.
One thing that I should have anticipated of course that really stood out in our interviews was when we talked with an organization that dealt primarily with the parents or care providing family members of people with disabilities, and we asked them about Privacy and like data collection and use, they took anytime a direction that we weren't entirely expecting where they wanted to be sure that they could track the user.
 (laughter) they wanted to be sure that they would be able to ‑‑ instead of thinking about making sure that the information of the disabled user was going to be subject to their consent and control, here the sort of client of this service provider was a family member who had just an active desire to not depend on that consent from the disabled user in order to better keep control over them.
You know presumably for benevolent reasons, but that was ‑‑ I took a big step back with that and was like, okay, we're going to have to think about which organizations we want to talk to (laughter).
MARY:  Thank you, there was also a question that slipped into the chat.  From Kathy Foley, has there been any research (reading verbatim)  ... when receiving service like counseling via virtual meetings?
DR. BLACKMON:  So there may be some available, but we don't come across that in our research.  And in fact one of the reasons we wanted to start with this particular line of research is because we felt like a lot of those conversations were missing when it came to technological development so the counseling part of the trust and Privacy prelated to something specific like counseling serves did not come up as a part of our research.
And did not even in terms of the disability community, but it couldn't surprise me if the beginnings of those conversations were not happening, but it didn't come up as a part of our work.  But you know what, as I say this, I'm thinking back to the market research interviews we did.  Because we had interviews that we ‑‑ interviews with study participants Bbut then we hassle had the 20 market interviews that Dillon just reviewed to and one of the things that came up during that interview was that there were people who were eitherlying with a family member or livering in group homes.  And so when everything changed to prior shall, there was the added layer of concern about privacy when people were sharing it online.  And not necessarily related to the technology itself, but because what used to be a privacy conversation that someone could do in an office is now nun a shared space and the concern about people around others knowing what they were sharing in a way that had just not been possible before.
So that came up, but it wasn't related to the technology itself, it was more the circumstances around the use of the technology, because now people had to negotiate what they said based on a roommate being there or a family member that they may not want to share that information.  That part did actually come up as a part of the market research.
So Hannah and tee yay ra did you want to share anymore about more surprising findings to the study ... who decide what is problematic and what is not
>>:  I don't know if I would necessarily say it was something that I found surprising, but something that really stood out to me and was kind of ‑‑ it really ‑‑ I don't know, like how to describe it, but really had me sort of excited/very disturbed, one of our participants mentioned the concern with how apps that track location if that's not turned off, say they can track if you're going to a therapy, where it be physical therapy or a counseling service, that sort of thing.  And that was something I just never thought about before specifically.  To me whenever I thought about location tracking, I thought it was just regular creepy, but then that added explanation how that can really impact the safety of a person with a disability, really was eye opening and it's something I think about a lot.
>>:  This is Hannah.  If you're asking specifically ab how the app decides what is problematic, one of the things that the developers are doing is integrated into the app sort of web coping system an ability to take consumer reports from a particular database so unless be an allegation of a bunch of different icers of experience of the technology or the application.  And this app that the technology team is developing takes these ‑‑ this stuff from this database and inputs that as a part of their grading system for how trustworthy the implication or the technology is.
DR. BLACKMON:  And to that point, I'll say that's how ‑‑ so users are deciding what's problematic and what isn't.  It's not ‑‑ the content is generated through the app, but the decision about whether or not something in the terms is a problem or whether someone wants to use an app of want, that's up to the user so what can happen is as tiara mentioned you'll get information pack about hey this may be a concern that your information is shared, so in that regard there is an assumption that something maybe a problem related to information sharing.  But that does not then turn into agency over whether or not to stop it from happening, that it's still very much the user's decision as to whether or not they want to continue using the device, whether or not they want to move forward it with, et cetera.  Sos I itself does not encroach on user's agency in that way.
SCOTT:  Okay we're getting toward the end here, so maybe we'll have one last charges a question.  And just reminder to fill out your survey and give feedback so if anybody has one more question, and if not we'll just go aheaded and wrap up I think so thank you so much for the presenters today.  And everybody we look forward the seeing you at the next session.
DR. BLACKMON:  Thanks everyone.
>>:  Thank you.
>>:  Thanks.