Tag Archives: apps

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

Tactile Graphics, An Introduction

Book Cover, Texture, Quackery All Bricked Up and Nowhere to Go ... Nailed Texture
Texture: Drain Cover Washington, DC: Donkeys: Black & Braille Rough
Montebello: Pottery Texture Woven Sculpture #4 Univ of Mich Binding Imprint

This week I attended a webinar on tactile graphics. Most people I know would say, “Tactile graphics? What does that mean?” So let’s start with that.

In a way, we’ve always had tactile graphics, in the broad sense of pieces designed for visual impact which carry tactile interest or information. Leatherworking often has designs punched into the leather; quipu knotwork carried mathematical data; old books had logos embossed into the covers; pottery might have painted ornaments layered onto the surface which can be felt and distinguished; sculptural shapes might be designed with textures that add layers of insight to the underlying meaning of the work; fabrics can have textures woven into them.

And of course, there’s always Braille, in which embossed or raised dots carry very specific kinds of meaning — words and numbers. In the center of the opening montage is an image of a sculpture of a donkey covered with Braille letters and words. This was a political statue in Washington DC. I don’t know what it says, but I imagine someone with blindness caressing the glossy blackness and curved shapes of the statue, reading the words of the Declaration of Independence, or the statements of the Bill of Rights. Such a powerful metaphor for the idea of tactile graphics. But in another sense, this explanation is a kind of digression, for in the actual world of artists creating art to be touched, the phrase they use is not “tactile graphics” but “tactile art” or “sensational art,” meaning art for senses beyond simply vision and art explicitly designed to be touched. If you are interested in this aspect of tactile artistry and graphics, you might want to be aware of the work of Ann Cunningham, who is a leader in this space.

Ann not only creates artwork that carries dual meaning through combined visual and tactile designs, but is also engaged in how this can carry over to shaping information and making “sensational books.” If you have ever tried to read a plain text (ASCII) version of a heavily illustrated book, in which the images have been redacted since they are not text, you may have some insight into the challenges of reading books while blind. You can read the text, but whenever you reach a place where an image is referenced, you read whatever description was given in the text, but that is usually minimal and refers to the image itself for further insight, and the image is not there. As a sighted person, I often go the the Internet Archive and download both the ASCII version of the book (for speed and portability) and a PDF version (which includes the graphics). I’ll read the ASCII text, and when I become sufficiently frustrated, I will open the PDF online version to see what image they are talking about.

Here is an example of what I mean, a work about Vincent Van Gogh. In the first screenshot, if you are sighted, you will see the title page and opening etching, entitled “Le Semeur.” The image shows a young man in peasant garb, grasping a large bag with his left hand, and making a gesture with his open palmed right hand. Even if you don’t read French, you may be able to guess at the meaning of “Le Semeur,” which is “The Sower.” In the second screenshot, if you are sighted, you will see the same area of the book in the raw text format. Where the image should be, there is nothing but a string of cryptic meaningless computer code, followed by the words, “LE SEMEUR.” There is no indication that you are even missing an image, no clue given as to what content it is that you are missing. Later on in the book, there will be a table listing images in the text, and that may give you a clue, but until you get to that point, you are pretty much lost.

Screenshots illustrating how images "translate" to text in OCR.
Screenshots illustrating how images "translate" to text in OCR.
Van Gogh, par Théodore Duret. Full: https://archive.org/details/vangoghvincent00dureuoft Text only:
https://archive.org/stream/vangoghvincent00dureuoft/vangoghvincent00dureuoft_djvu.txt

So, very broadly then, tactile graphics are graphics which carry meaning through elements that can be touched. More narrowly, the phrase “tactile graphics” has become meaningful as an explicit technique in the creation of accessible information for persons with visual impairment. This is actually closely related to the work being done by Ann Cunningham, since the technologies used function in a similar way, often creating a kind of bas-relief version of an image so that it can be perceived and interpreted by persons who are blind. It is also work that is closely related, conceptually, to Braille, in that it explicitly tries to convert information into a format that can be deciphered by persons with blindness, in this case, visual information.

This can be done with making lines on paper that will puff up so people can feel them. This can be done with special paper, special printers, or special pens. This works fine when the images are linear, but less effective when they are more complex. It can also be done through the techniques mentioned earlier, embossing, embedding, interweaving, etcetera. There are kits, special hardware, a whole variety of technologies being developed around ways to make tactile graphics. All of those approaches tend to be very time-consuming. New technologies being used to create accessible tactile graphics include 3D printing, in which image characteristics are converted to a three-dimensional form and literally converted into a kind of flattened sculptural form of the image. There are some concerns that all the hype around 3D printing will lead to people focusing on that as the ONLY kind of tactile graphic option, which is far from the case, or that people will mistake the conversion of images to 3d format for actually making the images accessible, which may or may not be the case. A particularly eloquent description of this dilemma was posted to Facebook by a teacher of young children with special needs, Yue-Ting Siu.

3D printing and Misappropriation for Tactile Graphics https://www.facebook.com/notes/yue-ting-siu/3d-printing-and-misappropriation-for-tactile-graphics/333500170166311

This was in response to a long conversation around this topic, one for which the entire conversation is well worth digging into.

That’s a very brief introduction into the concept of tactile graphics. I’ll include a few more links at the end if you want to explore more. The webinar from the Diagram Center was very interesting. The webinar, presented by Richard Ladner of the University of Washington, included a solid background in how tactile graphics for accessibility are being created now, some of the technologies, challenges, and solutions. Some of the problems are the time needed to create the tactile graphics, the low resolution of the information, the loss of complexity in the information content, and that certain types of information don’t translate well into current tactile graphic modalities. Then Dr. Ladner described the special problems associated with complex mathematical images and equations, especially those in advance mathematics, physics, and engineering texts. Without access to those images and that content, persons with blindness can be, in essence, excluded from those professions no matter what their actual talents might be. His team has been working on some new approaches to the idea of tactile graphics, creating images that can be read with a smartphone. Wow. Now, this is still fairly early in the development life cycle, but the potential for this new approach is phenomenal.

The Storify (below) includes my notes and links from livetweeting the webinar. The webinar itself, Tactile Graphics with a Voice, will soon be posted on the DIAGRAM site.

Storify: Tactile Graphics With a Voice: https://storify.com/pfanderson/tactile-graphics-with-a-voice


MORE INFORMATION

Tactile Graphics: http://www.tactilegraphics.org/
– Producing Tactile Graphics: http://www.tactilegraphics.org/computerassistedtactiles.html

3D Tactile Graphics: http://3dtactilegraphics.com/

American Foundation for the Blind:
– Basic Principles for Preparing Tactile Graphics http://www.afb.org/info/programs-and-services/professional-development/teachers/tactile-graphics/1235
– Braille Writing Tools and Tools for Tactile Graphics http://www.afb.org/info/living-with-vision-loss/using-technology/reading-and-writing/braille-writing-tools-and-tools-for-tactile-graphics/1235
– Deciding Whether to Create a Tactile Graphic http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/electronic-files-and-research-work-group/deciding-whether-to-create-a-tactile-graphic/12345
– Resources for Preparing Quality Tactile Graphics http://www.afb.org/info/resources-for-preparing-quality-tactile-graphics/5
– Tactile Graphics Course: http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/interested-in-becoming-a-braille-transcriber/tactile-graphics-3016/12345
– Types and Producers of Tactile Graphics http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/training-and-other-needs-work-group/types-and-producers-of-tactile-graphics/12345

American Printing House for the Blind:
– Tactile Graphics Image Library: http://www.aph.org/tgil/
– Tactile Graphics & Manipulatives Available from APH (Missouri School for the Blind: Outreach Services) http://msb.dese.mo.gov/outreach-services/documents/Tactile-Graphics-Products.pdf

UPDATE: MORE RESOURCES FROM THE DIAGRAM CENTER

The DIAGRAM Center: http://diagramcenter.org/
– The Accessible Image Sample Book: http://diagramcenter.org/standards-and-practices/accessible-image-sample-book.html
– Poet Image Description Tool: http://diagramcenter.org/development/poet.html
– Research Reports from DIAGRAM: http://diagramcenter.org/research.html
– Tools from DIAGRAM: http://diagramcenter.org/development.html
– Webinars: http://diagramcenter.org/webinars.html

At the Movies: Friends and Neighbors

Pain, awards, traveling autism, morphing metadata, potentially poisoned chocolate, technology use and drug abuse … It doesn’t sound like today’s videos have anything in common, but what they share is that all of them are either by people I know personally or are from places I’ve been and loved.



Empowering People for Community Health in Manistique, Michigan http://www.youtube.com/watch?v=Q-rajjRA9ds

Did you see that Manistique, Michigan is one of the winners of the Robert Woods Johnson Foundation Roadmaps to Health Prize? How awesome is that?! Completely aside from my loving the place, and aside from my mentor Maurita Holland having a long standing relationship collaborating with the tribe mentioned in the video, it’s just a great and inspiring story. I love the line, “Teach kids skills for a lifetime,” in the context of building healthy lives. I’m excited. You can see more videos about RWJF awardees in their grantee playlist. More info about the Manistique project here at the award announcement.



The United States of Autism Official Trailer http://www.youtube.com/watch?v=td1pxNXNjjU

While this isn’t exactly new as a Youtube video (originally uploaded in 2011) it is new in the sense that the movie the trailer was made for is finally actually OUT! The premiere in NYC is set for April. I found out through a Twitter friend of mine (TannersDadTim) who’s been working in support of this project for three years.

The United States of Autism: http://usofautism.com/ Arrange a screening: http://www.tugg.com/titles/the-united-states-of-autism

“Follow one man’s 11,000 mile, 40 day journey across the American landscape to visit twenty families and individuals affected by autism while searching for answers for his own son. With interviews from around the nation that include the widest spectrum of backgrounds – each conducted in the participants’ original language – the film weaves a broad and compelling tapestry across the spectrum of American life in all its faiths, disparities, colors, and cultures. What he learns along the way will change not only his life, but the lives of those he meets, forever. It’s a story about the best days that still lie ahead for our nation, the families, and the people who give America its heart.”



Cataloging Unchained http://www.youtube.com/watch?v=IQRHNdw2_yw

This one is for the librarians and metadata geeks in the crowd, and anyone with a sense of humor. My favorite line? “Metadata is inherently lazy. It just sits there unless you make it work. [sound effect: whip cracking]” Roy Tennant and I have known each other virtually, through email lists (mostly Web4Lib) and Twitter and professional publications, but have never met in person. I am delighted to see the library geeks talking about exploding library systems out into public and collaborative spaces.

“Created by Roy Tennant to introduce his talk “Leveraging WorldCat: Data Mining the Largest Library Database in the World” at the OCLC EMEA Regional Council Meeting 26 February 2013.”



RiskBites: Chocolate, Lead and the Measurement Conundrum http://www.youtube.com/watch?v=lZ6FvTU2rqk

I’m a HUGE fan of RiskBites, partly because I’m a fan of Andrew Maynard, and try to hang out over at his department on campus as much as possible. I have blogged about them here before. They just keep getting more and more interesting, and more and more intricate. This particular one is on such a great topic (chocolate!) and has really rich information resources in the video notes.



[Project] PainTrek – Mobile Pain Tracking and Analysis (Beta – v0.9) http://www.youtube.com/watch?v=CP8tvz2nmpY

I’ll be blogging more about this one later. Earlier this week (last week?) I livetweeted an event where this marvelous app was presented. PainTrek was the brainchild of Dr. Alex DaSilva in the University of Michigan School of Dentistry. I might add I worked in the School of Dentistry for over ten years, and have a deep and abiding love for the place and the people. Hearing Dr. DaSilva present on this and express so clearly his powerful desire to aid migraine patients didn’t do a thing to diminish that.



TEDxDesMoines – Peter Komendowski – Media Literacy: Mind Versus Mindful https://www.youtube.com/watch?v=8FwCUCquFsE

Last but not least, a video from TEDxDesMoines on media literacy. I grew up about a half hour from where this was recorded. The speaker, Peter Komendowski, isn’t someone I know, but he is an activist for Drug Free Iowa and talks here about the ways in which technology can be as addictive as drugs. This seemed especially timely, given that the National Day of Unplugging was just yesterday. Here are a couple of lines I really liked from his talk. “Tightness allows for a lot of efficiencies, but is it really humane?” “Do we really understand the difference between real and virtual?”

Tech-Savvy Fitness by @MarqueA2

I thought I had posted this eons ago. I was just browsing my draft blogposts (started several new ones this week), and found it UNPOSTED. I’m sorry, folk.

Marc Stephens is a friend & colleague. I’ve worked with him for several years now, even co-authoring articles. While Marc has always been an active sort of guy, I’ve been particularly impressed lately with his recent fitness kick. This has become a real change of lifestyle. Being a true geek, Marc has naturally incorporated a huge variety of tech tools into this, from gadgets to geocaching, apps and tracking and networks, personal fitness data collection and management and all that personal informatics geekiness…. He’s perfectly happy to test things out and then share what he’s learned with others, to the extent of teaching courses for med students and coaching individuals. He has collected such great stuff, I wanted to share it with people, especially since it seems relatively underutilized at the moment.

Here is a video of an interview with Marc telling the story of his transformation and motivations.


“A Fitness Journey” (08March2012Edit): http://www.youtube.com/watch?feature=player_embedded&v=jFi8vyk1a-g

Here’s the really primo collection of awesome resources from his popular class. Please note there are TWO extensive slide decks. Good stuff.


Tech-Savvy Fitness, Day 1


Tech-Savvy Fitness, Day 2

Want more about Marc and these projects? Marc has a blog, and there was a news article about all this.

Tech-Savvy Fitness (blog): http://tech-savvyfitness.blogspot.com

Med Students explore connected health through Tech Savvy Fitness: http://umhsheadlines.org/16/med-students-explore-connected-health-through-tech-savvy-fitness/

I collected a few more links, from other sources, just because that’s what I do, but hey! Marc is the real expert. Ask him what he thinks.

ABC World News Now : High Tech Fitness Apps and Gadgets: http://www.youtube.com/watch?v=iDwCKSMdWuk

About.com: Best Exercise and Fitness Apps for iPhone and iPod Touch, Let your iPod be your trainer. http://exercise.about.com/od/videosmusicsoftware/tp/fitnessapps.htm

Fox News: Partner up with these new high-tech fitness accessories for a boost in style, motivation, and protection. http://www.foxnews.com/tech/2012/04/24/partner-up-with-these-new-high-tech-fitness-accessories-for-upgraded-style/

Greatist: The 63 Best Health & Fitness Apps. http://greatist.com/health/best-health-and-fitness-apps/#

Mashable: 10 Fitness Apps That Boost Your Stamina, Speed and Strength. http://mashable.com/2012/07/27/fitness-apps/