Category Archives: Tech, Tools, Toys

Choosing a Tablet Computer for the Elderly & Technophobic

Grandpa

From the “Drafts Pile” post, some folk commented and others emailed, but this was the most requested topic, which made it top of my list for writing the next blog post.

INTRODUCTION

It wasn’t that long ago that we were picking out a tablet for my dad. Back in the day, my dad was a hard core computer geek — programmer, hacker, build-your-own. My childhood was chockfull of tickertape and punchcards and Tandy home computer kits being assembled in the basement. My dad was anything but technophobic, but even for him the new world of the Web was confusing. I remember when he and I were talking on the phone, and he was having a small rant about how he and his tech cronies at the local college had spent hours trying to figure out how to download an image from a web page. They were SO frustrated (this was about 10 years ago). I said, “What?! Right click didn’t work?” and he replied, “Right click? What are you talking about?” I suddenly realized that I had outstripped my father in the realm of technology. I think it was quite a shock for both of us.

When I heard that my dad was still trying to get by using a >10 year old Windows machine, flatbed scanner, and a 2400 baud modem, my heart ached. We kids talked it over and went together to get him and iPad. Why an iPad? Mostly because that’s what other folk in the family had already, and there was built in family assistance for him if he needed help. Not to mention, I could also add the charge for his Internet access to my account, and he never needed to worry about it. But that was us, and that was a few years back.

I cannot imagine how much MORE frustrating and intimidating it must be for people who were never strong with “The Force” when it comes to computers. In my family now, I am the tech wizard and my (ahem, adult) children are the ones who come to me with questions about how to do things. And I go to my geek-squad friends and sister when I get stuck with mobile tech. And someday, I will be like my dad, uncertain in the face of tech that has evolved so quickly it has outstripped my ability to keep up. What are the options now for you and your loved ones?

BACKGROUND

Being a senior doesn’t mean you are technophobic, being a technophobe doesn’t mean you are a senior, and you can still have challenges with technology without falling into either group. In addition to the elderly, there are others, such as children or persons with certain disabilities, who benefit from making tech simpler to use, more self-explanatory, and more durable. Ultimately, making computers easier to use benefits EVERYONE, just like curbcuts for wheelchairs help bicyclists and parent pushing strollers. That’s how accessibility works. What’s important is to not assume that “they can’t do it”, or it can’t be done. Everyday we make progress making computers better, stronger, faster, smarter, and, yes, EASIER. So, while this post focuses on the motivating idea of elderly folk who are struggling with computers, don’t limit your ideas of who might be helped to just those groups.

Seniors and Technology

The Pew Internet Research Center has been tracking how seniors use and work with the Internet since 2001, when only 15% were online (my early adopter dad being one). Now, 14 years later, it’s roughly 60%, and even within those seniors who use the Internet, there is a lot of variation in how well they are able to use it.

“Two different groups of older Americans emerge. The first group (which leans toward younger, more highly educated, or more affluent seniors) has relatively substantial technology assets, and also has a positive view toward the benefits of online platforms. The other (which tends to be older and less affluent, often with significant challenges with health or disability) is largely disconnected from the world of digital tools and services, both physically and psychologically.” Pew. “Older Adults and Technology Use,” 2014.

These two groups aren’t necessarily stable, either. People shift between them. Fifteen years ago, my dad fell into the first group of tech-savvy elders. By the time of his passing, earlier this month, he had shifted largely into the second category, but still wanted to check his email. For others, it might be that a new treatment, supportive living situation, or even a techy gift might actually bring someone MORE into the realm of using the technologies around them. While I was traveling home from my Dad’s funeral, an older woman stopped me in the waiting room at Union Station. Her 82-year-old boyfriend (her words) had given her an iPhone, and her girlfriend was texting her, but she didn’t know how to read or answer the texts. Our conversation ended with, ” … and when it turns green, that means it’s been sent? Oh, thank you!”

Technophobia

Technophobia is a far more important concern than simply one’s age. The fear of the technology can be isolating, keeping people apart from loved ones and friends when this is how they communicate and connect. This is such a problem, that people are actually building tech solutions to address such very specific issues such as sharing baby pictures on Facebook, and how do you include family members who are not ON Facebook? [Check out Kidpost, if you have this challenge in your family.] AARP recommended the Presto Printing Mailbox for seniors without a computer, allowing friends, relatives, and caregivers to send anything from family photos to medication reminders. AARP went on to fund a major white paper on the topic, Connected Living for Social Aging: Designing Technology for All (2011).

The phrase “digital isolation” has been adopted to describe this as a significant social issue within society, with titles like “Digital Isolation Plagues Those Who Need Internet Most” and “What Will Become of Britain’s Digitally Isolated After Martha Lane Fox’s Resignation?” Digital isolation is blamed as a contributing factor to poor outcomes in disaster response and health (especially in diabetes). The origins of technophobia may or may not lie in the technology itself, but the impacts are surely heavily social in nature.

“… rarely, if ever, is technophobia based just on the happenstance of technical ignorance. It almost always has its roots in … a sense of estrangement from the world into which one is cast. Here common sense cannot help, for it is from the prevaling common sense that one is estranged. To the technophobe, the technological world seems alien; to common sense, the technophobe seems foolish.” Burch, Robert. Confronting Technophobia: A Topology. Phenomenology + Pedagogy 1986 4(2):3-21. https://ejournals.library.ualberta.ca/index.php/pandp/article/download/15013/11834

Solutions to technophobia need incorporate that social aspect of the presumed problem. Sarah Maurer recommends that technophobes can get past the fear by starting slowly, taking a class, try a touch screen, get the same types of devices your relatives are using, and ask your kids and grandkids to help you learn your way around.

Maurer, Sarah. 10 Tips to Beat Technophobia: Seniors can conquer their fears and start enjoying online technology. WCCTA WebsiteCompass Spring 2012.

The National Legal Aid and Defender Association recommended in 2004 that you start out by playing Solitaire, using cheatsheets, and don’t make the mistake of asking a true geek for help (because they may not be the best communicators). They also recommended “reverse mentoring,” where you learn something and then teach it to someone else who knows even less. These are still good idea, although some folk might prefer to replace Solitaire with Candy Crush or Trivia Crack or one of the other hot new games.

NLADA. Overcoming Technophobia

More

If you are interested in tracking this area, I have two recommendations. One is Senior Tech Insider, a truly marvelous news tracking service from Karen Heyman which shares news and alerts about telemedicine, accessibility, policy and regulatory issues, and emerging technologies that touch on the lives of the elderly. The other is a counter to the argument I hear so often of, “I’m too old to try.” Me, I’m only approaching 60, so perhaps I’m not a persuasive case. So check out John F. McMullen, who is older than me. I’m not sure how much, but I know he was around for many of the tech events that shaped my youth, and he was tied right into them, knows the folk involved, and still writes about them and how the issues have progressed over time. He’s everywhere online (blogs, BlogTalkRadio, Facebook, Flickr, Google Plus, LinkedIn, OpenSalon, Podbean, Twitter, Youtube, …). He is enormously more engaged in multimedia production than I am. And he still writes and talks about technology. Never say it can’t be done. Heck, did you hear the one about the 114 year old woman who couldn’t register for Facebook because their age verification form didn’t go that far? It’s true.

TECH OPTIONS

So, even with recognizing there are some pretty significant social aspects to working with a loved one to help them get online, and assuming that they don’t have a philosophical opposition to the very concept and are willing to try, what happens next? Where do you go, what factors are most important in your decision, what are the choices? Do you go with a ASUS VivoTab, RealPad, In-Touch, iPad, Kindle Fire, or … what?

COMPARISONS & SELECTION CRITERIA

Checklist

COSTS
– Device Price
– Network Access (is included, or is extra?)
– Monthly fees?
– Carrying case or protection (optional)
– External keyboard (optional)
– Security or registration (optional)
– Training or courses (optional)
– Tech support (included or optional extra?)
HARDWARE OPTIONS
– Display (resolution, crispness, color, screen size, enlargement, zoom, etc.)
– Buttons (size, visibility, clarity of purposes)
– Keyboard (built-in, optional add on, external, on-screen, in-case, …)
– Battery life
– Wall or plug-in charger
– Weight
– Memory card slot (optional)
SPECIAL & PERSONAL FACTORS
– Tech Support available, what kind, does it match person’s preferences?
– Interface & appearance
– Accessibility & font enlargement
– Background Skills
– Special health concerns that may impact on how device is used
– Apps available for personal interests
– Apps available for hobbies & games
– Apps available for special health needs or tracking

More resources

For Dummies: For Seniors: Buying the Right Tablet: http://www.dummies.com/how-to/content/for-seniors-buying-the-right-tablet.html

My Ageing Parent: Computers or tablets for older people? http://www.myageingparent.com/computers-or-tablets-which-are-better-for-older-people/

My Ageing Parent: Are there better tablets for elderly than iPad? http://www.myageingparent.com/better-tablet-ipad-elderly/

New York Public Library: Tablet Buying Guide: A Primer for Technophobes, Luddites and the Just Plain Confused (2013) http://www.nypl.org/blog/2013/12/20/tablet-buying-guide

Senior Planet: The Best Tablets for Technophobes (2014) http://seniorplanet.org/the-best-tablets-for-technophobes/

TechRiggs: Best Tablets for Seniors and Elderly Senior Citizens (2015) http://www.techriggs.com/best-tablets-for-seniors-and-elderly-senior-citizens/

HARDWARE OPTIONS

These are currently the best known and available tablet computers which were either designed explicitly for seniors or which are being promoted as useful for that demographic. Several of these were designed in collaboration with seniors, such as the AARP RealPad and the Senior Touchpad. Some of these have been around a while and have a lot of pre-existing support resources, like the iPad, Chromebook, and Kindle. Others are brand new, like the GrandPad, just announced in February 2015.

MORE:

Best Tablets for Seniors and Elderly Senior Citizens http://www.techriggs.com/best-tablets-for-seniors-and-elderly-senior-citizens/

Don’t waste your money on AARP’s RealPad http://www.modern-senior.com/dont-waste-money-aarps-realpad/

Great deals on tablets for seniors: http://www.modern-senior.com/great-deals-tablets-seniors/

Hashtags of the World (HOTW): #WhatIfResearchKit / What If Research Kit … ?

Apple ResearchKit
Apple ResearchKit: https://www.apple.com/researchkit/
ResearchKit for Developers: https://developer.apple.com/researchkit/

Last week, while I was deep in the throes of a family crisis, Apple announced “ResearchKit.” I noticed it, but obviously had no time to do anything with it. I’m looking forward to exploring that. I mean, really, it’s getting a ton of press!

9to5Mac: ResearchKit did in 24 hours what would normally take 50 medical centers a year – Stanford University

Bloomberg Business: Thousands Have Already Signed Up for Apple’s ResearchKit

CNBC: Apple’s ResearchKit: Gamechanger for digital health care?

Forbes: Apple’s Open-Source ‘ResearchKit’ And The Future Of Medical Research

MacWorld: First medical apps built with Apple’s ResearchKit won’t share data for commercial gain

MacWorld: Stanford’s ResearchKit app gained more users in 24 hours than most medical studies find in a year

TechCrunch: ResearchKit An “Enormous Opportunity” For Science, Says Breast Cancer Charity

TedBlog: mPowering the Apple ResearchKit: How Max Little put a Parkinson’s app on the iPhone

TheVerge: Apple’s new ResearchKit: ‘Ethics quagmire’ or medical research aid?

TheVerge: Apple’s new ResearchKit lets iPhone users participate in clinical trials; It could help researchers recruit from more diverse populations

Wired: Apple’s ResearchKit is a New Way to do Medical Research

Here is what Apple and it’s current group of partners are envisioning for how ResearchKit might be used. It sounds pretty inspiring already, with a nod to some of the complicated ethical and privacy issues poised to emerge.


ResearchKit – how iPhone is transforming medical research https://www.youtube.com/watch?v=VyY2qPb6c0c

In the meantime, several of my friends and colleagues on Twitter have begun discussion their visions for what could be done with ResearchKit. This group includes patients as well as researchers, and this, I suspect is the demographic, the community creating collaborations where the most profound and productive changes will be found. Here’s what they are saying, so far. Why don’t you join in?

Why stop there? What other possibilities could come from widespread adoption and use of ResearchKit?

#WhatIfResearchKit helped monitor the progression of Alzheimer’s Disease. Like a more official version of what was seen in ‘Still Alice’?

#WhatIfResearchKit helped improve treatment and intervention for depression through passive activity tracking?

#WhatIfResearchKit apps were developed in collaboration with the patient community? If these apps aren’t used, there’s no data to analyze.

What if Apple released a tool so anyone could make a #ResearchKit connected app. True citizen science. #WhatIfResearchKit

What if a community of translator helped translate #ResearchKit studies and consent information into other languages. #WhatIfResearchKit

#WhatIfResearchKit was rolled into the #PrecisionMedicine initiative and the NIH took a more open-source mentality to data collection.

That #WhatIfResearchKit already exists recalls @rufuspollock: “The best thing to do with your #data will be thought of by someone else.”

#WhatIfResearchKit tracked child development so that children with autism could be diagnosed quicker and provided with skills

Catching up on two rich threads: #bcsm + #WhatifResearchKit Who says we can’t cry and laugh and hope and rage all at the same time?

#WhatIfResearchKit was a cross-platform non-profit initiative partnering together device manufacturers to better healthcare? #DigitalHealth

“The key to understanding #health & disease is research & data.” Check out @AppIeOfflciaI’s #WhatIfResearchKit: http://apple.co/1FFSLR8

#WhatIfResearchKit JMIR will built a Healthbook app which randomizes participants to #mhealth apps #megatrial with 700 million participants

Healthbook http://www.healthbook.com/ will use #researchkit and also support n-of-1 trials to evaluate #mhealth apps #WhatIfResearchKit

What if all the people who are “healthy” (for now) could contribute their data as controls? #WhatIfResearchKit

#WhatIfResearchKit had an opt-in for every human, to proxy any slice of my data to #opensource science. +audit-trail

#WhatIfResearchKit was my life baseline, always collecting data when I’m healthy, so when I’m sick, the record is computable + comparable.

#WhatIfResearchKit was available on android platforms to ensure more socioeconomic, racial and ethnic diversity of participants

#WhatIfResearchKit flipped the paradigm community based studies studying access to care, how tertiary care centers impact POC communities

What if Apple made a dashboard so that we could all see enrollment numbers for #ResearchKit apps (in real time)? #WhatIfResearchKit

Reporters: If you are writing about #ResearchKit check out the ideas being shared here: #WhatIfResearchKit (and interview those innovators)

#WhatIfResearchKit – A story in 140 character bursts of hope https://storify.com/iamspartacus/whatifresearchkit … via @iam_spartacus

Personalized Medicine, Biosensors, Mobile Medical Apps, and More

At the Quantified Self Meetup, someone was praising the Rock Health slides. Of course, I had to go explore and see what was so great. These are my favorites.

About FDA’s Guidance for Mobile Medical Apps

FDA 101: A guide to the FDA for digital health entrepreneurs by @Rock_Health: http://www.slideshare.net/RockHealth/fda-101-a-guide-to-the-fda-for-digital-health-entrepreneurs

I especially took note of slide 10, where they describe things I would think of as an app, but which do not qualify as such for FDA regulation. This is an important distinction I hadn’t previously considered. Slide 12 takes it further by describing the categories of regulation as based on risk to patients, with good clear examples. Slie 21 on “pro tips” would have really benefitted companies like 23andMe (even though that isn’t actually a mobile medical app, the pro tips still apply, and in spades).

Biosensing Wearable Tech

The Future of Biosensing Wearables by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-biosensing-wearables-by-rockhealth

This one definitely gets into topics relevant to the quantified self movement and self-tracking. Slide six emphasizes the shift from the low hanging fruit (fitness, pulse, sleep) to the long tail — more targeted solutions for specific challenges (hydration, glucose, salinity, skin conductance, posture, oxygenation, heart rhythm, respiration, eyetracking, brain activity, etc.). That’s really quite interesting, and it gives examples of companies working in each space.

Slides 19-24 get into several of the areas our own local meetup defined as challenges to success for companies working in this space and for the future success of the entire area — it has to work, easily, and dependably. Slides 27-30 extrapolate these challenges into the transition into healthcare environments.

Personalized Medicine

The Future of Personalized Health Care: Predictive Analytics by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-personalized-health-care-predictive-analytics-press Video https://www.youtube.com/watch?v=UJak41hIDWc

SLIDES

VIDEO

It’s probably safe to say that most individuals working in the quantified self / self-tracking space eventually end up struggling with the issue of how to use their data to anticipate avoidable problems. This idea can be translated into the jargon phrase of “predictive analytics.” Slide 11 does a nice job of lining this up with how traditional healthcare is practiced, which is very useful. Slide 12 places this in the context of big data resources, databases, and tools, listing several of the main players. This context is essential for making personal data relevant beyond the drawn out process of n=1 studies. Slide 14 identifies the BIG problem of how companies working in this space largely focus on hospitals and health care providers, and seem to have entirely missed the idea that patients are deeply and actively engaged in this space. And, frankly, there are more of us than them (even if our pockets aren’t as deep). I love the phrase on slide 18, “Symptom calculators are the “recommendation engines” of health care.” Most of the rest of the deck identifies challenges and opportunities, which I hope any entrepreneurial types would examine closely. Do notice that there is a video with this one. You can hear the entire webinar as well as reviewing the slides.

Quantified Self Meetup, Ann Arbor

Cool Toys, Devices, Quantified Self

Last week, I felt really lucky that I was able to make it to the first Quantified Self Meetup of the New Year (thanks to Nancy Gilby for the ride!). This session was held at the UMSI Entrepreneurship Center. Roughly ten folk came, and I’m not sharing names even though they said I could because I’m not sure I got the names down right. The group included a wide range of types of people: corporate folk, students, entrepreneurs, faculty, alumni, and independents. The conversation was fast, dynamic, and overlapping, so I couldn’t catch everything. I will talk about what I did catch of the IDEAS and the GADGETS. That’s what’s really fun, eh?

INTERESTS

What the Meetup group page SAYS they are interested in (as a sampling) is pretty extensive.

“Aging in Place Technology • Behavior change and monitoring • Caregiving of digital patients • Chemical Body Load Counts • Citizen science• Digitizing Body Info • Medical Self-Diagnostics • Lifelogging• Location tracking • Non-invasive Probes• Mindfulness and wisdom tracking • Parenting through monitoring/ tracking • Personal Genome Sequencing • Psychological Self-Assessments • Risks/Legal Rights/Duties • Self Experimentation • Sharing Health Records • Wearable Sensemaking”

What’s even more interesting is what people said they were interested in as they went around the table.

  • aging population
  • big data
  • biohacking
  • data visualization
  • diabetes
  • epigenetics
  • fitness
  • geofencing
  • legal advice
  • patient communities
  • personal genomics
  • sleep tracking
  • telehealth

The “legal advice” bit? That was from someone planning a wearable tech start up. They got some interesting answers on that point: Scott Olson, of UM’s Pediatric Device Consortium; SPARK; Medical Innovation Center, Fast Forward Medical Innovation, and (depending on your UM affiliation) possibly the Student Legal Services, UM’s Startup Law Clinic (Twitter), Zell Lurie Institute.

For the personal genomics, it was a great surprise to me to meet another person who knows their MTHFR status (and who also has two defective copies of the gene, AND is working on problem solving as hard as I am)! We were swapping info, apps, diet tips and tricks, formulations of supplements, and more. There just wasn’t enough time to dig as deeply into this as I wished. I did get to do my now normal rant, “23andMe was NOT killed off!”

ISSUES

After introductions, we just had an open conversation, much of which touched on challenges in quantified self tools. This was what had the meeting stretching WAY past the planned time!

  • QS devices are not being designed for longevity, but for rapid failure
  • QS devices are not being designed to actually work, by and large, which is frustrating to folk buying them early, and an argument for doing QS with low-tech self-hacked solutions
  • to integrate into personal healthcare solutions, there is a need for calibration with official medical devices
  • how are data measurements defined? it. “sleep” cycles based on movement, rather than REM cycles.
  • desperate need for standards of measurement, to empower folk wanting to discover trends and patterns across tools, data sources, and apps
  • who is funding these?
  • data visualization for self-discovery; “correlation” vs aggregator apps; challenges of meaningful analysis
  • HIPAA and QS: patient self-reporting data as an FDA loophole; PHI – Personal Health Information (personal sharing loophole)
  • requirements for insurance coverage – need doctor’s prescription for some very useful medical devices; reimbursement codes can be tricky
  • reverse innovation
  • risk science, risk of failure, costs of failure
  • when designing a device, think about how will it fail?
    design for how to make it work or how to make it fail?
  • how can small companies compete? “innovative/unique, protected, acquired”
  • security, open data, hack into someone else’s data, ownership of data

Any one of these could easily be a devoted session, presentation, or series of blogposts. The bit about failure especially interested me. The idea was that these devices seem to be being designed to fail, as is pretty standard for tech in general these days. But what happens to the end user if they get to the point where they trust the wearable tech device, trust its data, and can’t tell that it has stopped working properly or is on the verge of failure? The FDA keeps tabs on what happens with medical device failures in their MAUDE database. The problem is that this only applies to devices that go through FDA approval, and most of the wearable tech devices folk use for biohacking or self-tracking personal health information, well, they are not FDA approved. People were talking about how much risk is there, impacts, and devices that are low risk. I shared a story of a time when a blood pressure cuff lead to a fatality some decades ago. That was pretty shocking to them, because we tend to think of blood pressure cuffs as being pretty innocuous. How did it happen? It failed during surgery, and kept giving normal readings when the patient was actually having trouble. The idea was that even simple tech can have serious impacts when the stakes are high and people are depending on it.

DEVICES, SERVICES, APPS, & MORE

Of course, we all had to talk about our toys, how we like them or don’t, what we’d change, what we’re thinking about buying, our experiences with customer service from the different companies, companies that are failing or expanding, new releases, etc. I tried to keep a list of devices mentioned or waved around (not all of which were pertinent to QS), but I’m pretty sure I missed a few. The same is true of services, apps, and such, but I’ll give links for the ones I caught.

DEVICES

While most of the gadgets mentioned were in the room and functional, that wasn’t true across the board. Some of these were mentioned as warnings (“a glorified pedometer” “gave me headaches” “out of business”), so please don’t take this list as an endorsement.

SERVICES

I know there was another few genetic analysis tools mentioned that I can’t remember, and I’m really frustrated that I can’t remember. Later, trying to prod my memory, I found this great list (“What else can I do with my DNA test results?“) but I’m still hoping that the person who mentioned the other tools will comment on this post with what I missed.

APPS / SOFTWARE

The apps here include tools for mobile and desktop, for data analysis, self-tracking, behavior modification, communities, and time management / lifehacking. What isn’t included is the conversation about low-tech alternatives, such as replacing calorie counting apps with photos of what you ate, or using notebooks instead of tracking apps. Quantified self doesn’t have to take a lot of money and gadgets (but perhaps that should be a separate post).

RESOURCES

Please note that this is NOT a collection of the best ever anywhere resources on Quantified Self, but rather (as with all the other lists in this post) a collection of what was mentioned during the meeting.

Last but not least, I collected a whole bunch of links I stumbled on during the meeting in one large “OneTab” collection. It includes 76 web pages that I wanted to come back to, reflecting more details or random conversation digressions. You can find it here: http://www.one-tab.com/page/EKdC99v0Q2-nZYfOm41lOw.

Ebola and Emerging Technologies

Ebola & Emerging Tech

Ebola & Emerging Tech: http://www.mindmeister.com/485610588/ebola-emerging-tech

Our local Cool Toys Conversations group had asked to have a discussion of emerging technologies and Ebola, and “could we please have it before the holidays when everyone will be traveling?” I had tried to get this up early last week, but life happened, and so it is coming to you now.

When we started looking at this topic I was surprised to find so much! I probably shouldn’t have been — Ebola is big news. It seems as if everyone doing anything in tech and emerging tech is doing something interesting related to Ebola. Well, except Apple. And that surprised me, too. There were so many links, so many topics, I could have EASILY done a month of daily blogposts just on this topic. Once we started, we kept finding more. The collection of links was getting overblown, random, chaotic, confusing. I decided to organize them all in a mindmap, and doing that took a while. Mindmeister kept saying, “Too many topics at one level!” This is why it is broken down into 4 section, but don’t take those sections too seriously. They are more an artifact of the process than seriously meaningful. Each major topic probably has minor topics and links that could easily belong in another section. For that reason, I thought it might be helpful to give an alphabetic list here of what’s included in the mindmap (which is also where you’ll find all the actual links – hint? Click on the little arrows).

I have so many favorite projects and resources I can’t possibly highlight them all. If life and time permit, I’ll try to throw together a slideshow with screenshots of some of them. Just as teasers, here are just a … a smidgen, a teeny tiny sampling. Tim Unwin wrote a great overview of exciting ways in which emerging technologies are being used in the Ebola crisis. Biosensors, wearable tech, open everything, code repositories, data, genetics, DIYbio, mapping and tracking, apps (tons of them), reverse innovation, open source pharma, gaming, cryogenics, … the list goes on and on. You already know how completely enchanted I am with the maker movement right now, and this is no exception. Makers Against Ebola designed flash sensors and proximity alarms to help prevent contamination while working with patients, pull tabs and zipper extenders to make it easier to get in and out of the Personal Protective Environments (which you might recognize better as hazmat suits). The DIY Ebola Challenge came up with a great variety of open source hardware solutions for scientific equipment, in efforts to design a kit they couple bundle and share at point of need. So far they have centrifuges in all sizes, PCR thermocycler, gel electrophoresis, spectrometers, multichannel pipettes, and more. Other folk are using tools like the Raspberry Pi and Beaglebone Black to design inexpensive syringe pumps and diagnostics. And then there’s robots! Robots to decontaminate, robots to intercede between people and create a distance than may contain the disease (like a social firebreak). The ways in which people are using tech to highlight the personal aspect is also awe-inspiring. From citizen journalism to ebola MOOCs to the WAYout Ebola Song, with every social media tool you can name, someone is doing something to try to help share important stories and information. There is a lot more in the mindmap, with links for everything. There’s even a section on open access images about Ebola to use foe teaching, training, and education. Check it out — here’s an outline.

GENERAL

Articles
Collections

PEOPLE DRIVEN

Advocacy
Citizen Science
Citizen Journalism
Collaboration Tech
Communication (Challenges: Misinformation & Hype, Stigma, Weaponized; Solutions: Education & Training, Ebola Information, MOOCs, Information & Health Literacy, Wikipedia
Social Media
Research
Crowdfunding
Crowdsourcing (Challenges)
Makers & DIY
Open (Open Access, Open Images, Open Data, Open Government, Open IBM, Open Source Code Repositories, Open Source Pharma, Open Sources Wearables)
Reverse Innovation

SCIENCE DRIVEN

Arxiv/bioRxiv
Biohacking / DIYbio / SynBio
Data (Data modeling, Data visualization
Open Data
Diagnostics
Genetics
Mapping / Tracking
Nanosilver
NASA

TECH DRIVEN

3D Printing
Apps
Biosensors
Biotech
DARPA
Biocontainment
Cryogenics
Diagnosis
Gaming
Geolocation / Geotagging / GPS
Hackers
IBM
Mobile
Robotics (Asepsis, Telepresence)
Telemedicine
Wearable Tech (Biocontainment, Personal Protective Environments)

Anonymous Social Media Overview, Part Three: The Whisper Controversy & Beyond

I had said in Part Two of this series that I was waiting to talk about the Whisper Controversy because it was still unfolding so dramatically. Things are starting to wind down, and so last night I put together a Storify mapping out my perspective of the timeline of how this has all been happening.

Briefly, Whisper was trying to do a good thing, but it seemed to go wrong.
Guardian called them out on issues related to privacy & user tracking.
Story exploded.
Whisper defended themselves (mostly via Editor-in-Chief).
More explosions.
Guardian gleefully expanded on their original story.
Yada yada.
Whisper tries to regain trust (mostly via CEO).
Editorial team “laid off” pending investigation.
And now the clean up work starts.

Check the Storify for more details and specifics.

Meanwhile, Whisper is not alone. Far from it! Snapchat was hacked. Snapchat is probably the most famous anonymous social media app right now. Before they were hacked, all sorts of people were making tools (1, 2, 3) to “break” Snapchat’s rules about keeping copies of deleted pictures without permission. (The same sort of thing is happening on other ‘anonymous’ social platforms, like Tumblr with KnowAnon. And people posted private sex tapes on YikYak, which is also infamous for cyberbullying and violence and threats.) And the Federal Trade Commission is investigating some of the problems with Snapchat. People still trust and use Snapchat. And there are apps designed explicitly to, well, invade your privacy on an opt-in basis, like PeekInToo. This post has focused on the privacy issues, but violence, dishonesty, and cyberbullying remain significant issues in many online spaces. So, that’s the bad news. In the next post, I’ll look at some of the good things being done with social media.

Anonymous Social Media Overview, Part One: Context, Risks, Benefits & Opportunities, Best Practices

CONTEXT

Following on the heels of Monday’s post about suicide prevention as it intersects with anonymous social media, I thought it might be helpful to have an overview of some anonymous social media apps, and the current state of the conversation around their risks and benefits. One of the reasons this seems to keep coming up is the NYMWARS (or, as Danah Boyd puts it, The politics of “real names”). While this issue arose originally in 2011, it never seems to really go away. Today’s Twitter feed for the hashtag #nymwars gives evidence of this.

There is a lot more where that came from. Danah described the issue as being one of power and control.

“When people are expected to lead with their names, their power to control a social situation is undermined. Power shifts. The observer, armed with a search engine and identifiable information, has greater control over the social situation than the person presenting information about themselves. The loss of control is precisely why such situations feel so public. Yet, ironically, the sites that promise privacy and control are often those that demand users to reveal their names.” Comm ACM 2012 55(8):29-31.

There are many who believe that requiring transparency (as in ‘real name’, as in the name on your birth certificate) of all users helps to protect the community from bullying and rudeness and other uncivil behavior. This is debatable, and there is supporting evidence on both sides of the debate. At the same time, forced transparency endangers others in the community (anyone at risk or in a marginalized population) at the same time it undermines identifying anyone who uses a pseudonym as their primary identity.

Facebook is enforcing its “real names” policy, insidiously outing a disproportionate number of gay, trans and adult performers — placing them at risk for attacks, stalking, privacy violations and more. Facebook is strong-arming LGBT and adult performers to use their legal names, telling these at-risk populations that it is to “keep our community safe.” Facebook nymwars: Disproportionately outing LGBT performers, users furious

While there is an acknowledged emphasis in the current fuss over Facebook names on excluding LGBT persons, the problem is much broader, and also effects many people with unusual real names. Chase Nahooikaikakeolamauloaokalani Silva is one recent example, but it is so common that Facebook has a section of their help site devoted to these incidents.

"Facebook says my name is fake. It is real."
Facebook says my name is fake. It is real. https://www.facebook.com/help/community/question/?id=10151790248568209

Unfortunately, when this happens to people, Facebook will only consider correcting the problem when supplied with a copy of a legal government ID, such as a passport, drivers license, or birth certificate. Sometimes, those aren’t good enough, which REALLY annoys people. If it was me, I would not be happy or feel safe supplying a copy of my government ID to Facebook or via electronic means. That entire approach is not only an invasion of privacy, but a strategy that would seem to place the victim at risk of identity theft. It just makes me really nervous. When this arose back in 2011, the Electronic Frontier Foundation distilled the concept of NYMWARS as an important trend for that year.

EFF immediately advocated for the right of users to choose their own names on social networking sites, whether they’re women or minorities concerned about their privacy, activists in authoritarian regimes who want to speak out without the threat of government harassment, or users with persistent nicknames or pseudonyms they’d used online for years…. EFF had been loudly opposed to Facebook’s “real names” policy for years, pointing out that community policing of real names silences some of the people who need this protection the most—people with unpopular opinions—because opponents can easily have their accounts suspended by reporting them as pseudonymous. 2011 in Review: Nymwars.

My favorite piece, and the best short distillation I’ve seen was posted to Facebook a little over a week ago by one of my favorite people in healthcare social media, @DrSnit. It is substantially excerpted here with permission.

Requiring a “legal name” is problematic for the following: 1) counselors and therapists avoiding a stalking client 2) physicians avoiding patients seeking medical advice 3) Attorneys dealing with angry criminals with a vendetta 4) women (like me) dealing with abusive partners & leaving abusive relationships. Those people who are being stalked or have been stalked WHO DO NOT WISH TO BE FOUND BY THEIR EX’S OR EX’S FAMILY & FRIENDS 5) Gender queer people, butch lesbians, and trans people who use different names than the names they were given at birth. 6) Stage performers, writers, artists who use different names for their art and their family / friends 7) People who use their middle names or nick names from birth or derivatives from birth. (This is off the top of my head – not exhaustive list).

Legal names are good for: stalkers, abusers, ADVERTISERS

FB claims it is to keep stalkers and abusers from taking fake names to harm people – but stalkers are REALLY GOOD at what they do and use nefarious methods to deal their damage. FB isn’t protecting anyone. They are harming people who CHOOSE to use different names because because it messes with their advertising analytics. Don’t let them. You don’t NEED FB bad enough to be harmed by their policy. If anyone you know has been hurt or stalked – let FB know and if they don’t change their policy – use other social media that is more women and safety friendly.

Let me repeat the most important line.

Legal names are good for: stalkers, abusers, ADVERTISERS

So, with that as context, perhaps the explosion of anonymous social networks may be, at least in part, a reaction to the forced transparency of other social networks. I have friends who have always used a “fake” name on Facebook. It is their real identity, and it sounds and looks like a normal name, and Facebook has never given them any trouble about it. I also know of those who are using their legal name, and getting hassled about it. The upshot is that anonymous networks are a justifiable response, but they carry their own risks, and their own benefits. Let’s take a quick look at some of these.

RISKS

There are a lot of nasty words tossed around about the bad side of anonymous online services. The big ones seem to be that (1) they are not really anonymous; (2) people are mean (bullying & more); (3) you can be victimized in many different ways. Here are some of the types of words used in articles that describe the risks of anonymous social media and social networks.

abuse
bullying
character assassination
hacking
harassment
identifiability
falsehoods
lies
not anonymous
prejudice
racism
rape
sexism
sexting
sexual predators
solicitation
stalking

BENEFITS / OPPORTUNITIES

Safe spaces for persons who need anonymity to be safe or to be treated equitably, such as
– Battered wives,
– Persons who are part of a marginalized or abused community,
– Celebrities,
– Whistleblowers,
– Political minorities,
– Political dissidents,
– Crime witnesses.

Suicide prevention & outreach.

Crime prevention

Therapeutic benefits of engaging for those with social anxiety.

Reaching out to those who suffer from shame.

Free speech on unpopular issues without fear of reprisal

Domestic violence support groups or outreach

Advice channels / threads / tags

Therapeutic channels / threads / tags

BEST PRACTICES FOR ENGAGING (MAYBE)

Don’t ask / Don’t tell (personal information).

Don’t identify yourself.

Don’t use your name.

Don’t use a known pseudonym.

Don’t use a friend’s name.

Don’t ask others to identify themselves.

Don’t describe your location, appearance, or other identifiable characteristics.

Don’t give your email address, street address, phone number, or other direct contact information.

Ask others you trust if they’ve had good or bad experiences there.

Post harmless stuff while testing.

TEST IT OUT!!

MORE SOURCES

(1995) Rigby, Karina. Anonymity on the Internet Must be Protected. http://groups.csail.mit.edu/mac/classes/6.805/student-papers/fall95-papers/rigby-anonymity.html

(2002) Dvorjak, John C. Pros and cons of anonymity. http://www.pcmag.com/article2/0,2817,801688,00.asp

(2011) Bayley, Alex Skud. Preliminary results of my survey of suspended Google+ accounts. http://infotrope.net/2011/07/25/preliminary-results-of-my-survey-of-suspended-google-accounts/

(2011) McElroy, Wendy. In Defense of Internet Anonymity. http://mises.org/daily/5541/

(2011-2014) Geek Feminism Wiki. Who is harmed by a “Real Names” policy? http://geekfeminism.wikia.com/wiki/Who_is_harmed_by_a_”Real_Names”_policy

(2013) Santana, Arthur D. Virtuous or Vitriolic: The effect of anonymity on civility in online newspaper reader comment boards. http://www.tandfonline.com/doi/abs/10.1080/17512786.2013.813194