Category Archives: Lifehacks

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/

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.

Who Is Making Health Here? #makehealth

Reposted from Health Design By Us: Who is Making Health Here? #makehealth; Find out about the health-makers you’ll meet on Saturday!


We Make Health Fest (University of Michigan)

When we started planning this, more than once Joyce told me, “Hey, I’ll be happy if five people show up.” Well, we did a lot of talking, had a lot of meetings, asked people to spread the word, and … the resulting response has been beyond our WILDEST dreams! Since this is our first time, we wanted to keep this as open as possible, and create as many opportunities for people to be involved as we could. Exhibitors are timesharing booths and tables. Speakers are doing mostly pecha kucha style 5-minute presentations. We didn’t want to say “no” to anyone! So if you say you’re a maker and wanted to be involved, we did our darnedest to try to fit you in somewhere. So who all will you find if you come? Here’s how you find out.

On our website: http://makehealth.us/

Direct link to the full speaker and exhibitor schedule as a downloadable PDF: http://bit.ly/MakeHealthFestSpeakers

We also are in the process of adding the schedule into Lanyrd.

Lanyrd: We Make Health Fest: Schedule

Lanyrd has an app, if you want to use it during the event.

Lanyrd apps: Android | iPhone | Mobile Web | Open Web

Or you can simply read on!

SPEAKERS

10:30am Joyce Lee / Welcome
10:35am Jose Gomez-Marquez / Keynote
11:05am John Costik / Keynote: Hacking Diabetes
11:35am Andrew Maynard / Color My Poop Beautiful, and Other Tales of Tech Derring Do
11:55 Makers the Movie
1:05pm Matt Christensen / Linnetic: A Better Way to Monitor Asthma
1:10pm Nanci and Eilah Nanney / GREAT Gluten-Free Kitchens!
1:15pm Marc Stephens / Tech-Savvy Fitness
1:25pm Jane Berliss-Vincent / The iPad as Resuscitation Device: Notes on Assistive Tech in the Hospital Environment
1:35pm Linda Diane Feldt / There is a Free Lunch: Wildcrafting and Foraging for Food and Medicine
1:45pm Kris Kullgren / Mott Kids4Kids: Utilizing Peer Education Videos at Bedside and Beyond
1:55pm Amer Abughaida / A Manual Stair-Climbing Wheelchair
2:00pm Duane Mackey / Open Source Mosquito Trap
2:05pm Brandon McNaughton / Kitchen-Table Diagnostics with Glass Microbubbles
2:10pm James Rampton / Learning Health System – Consumer Application
2:20pm Irene Knokh / Free Educational Resources: MERLOT and beyond!
2:25pm Mike Lee / Demonstration of World Possible’s Remote Areas Community Hotspots for Education and Learning (RACHEL) Project
2:35pm Sandy Merkel / The Poke Program
2:45pm Harpreet Singh / Communication Box: Flip the Health Care Culture by T.R.U.M.P. Technique
2:55pm Michael Flynn / Fostering a sense of community in hospital lobbies with interactive public art
3:00pm Gary Olthoff / EZCarryBed Mattress Carrier Handle
3:05pm George Albercook / DIY Hearing Aids – A Model MakeHealth
3:15pm Pete Wendel / Games and User Interface Design: Thinking Differently to Affect Elderly Quality of Life
3:25pm Lia Min / In My Spectrum: A Comic about Autism Desktop
3:35pm Shawn O’Grady / 3D Printing and Rapid Prototyping
3:40pm George Albercook / Makers Answer the Call
3:45pm AJ Montpetit / Disrupting Health Care
3:55pm PF Anderson / Personalized Genomics and Closing Remarks

EXHIBITORS

10am – 12pm
IconArray.com: A Free Generator of Health Risk Graphics
Linnetic: A Better Way to Monitor Asthma
Type 1 Diabetes

10am – 1pm
Building Capacity for the Ann Arbor Sharing Economy
National Foundation for Celiac Awareness — GREAT Kitchens!
We Make Health Stories

10am – 2pm
Cardboard Challenge: #makehealth
Kitchen-Table Diagnostics with Glass Microbubbles

10am – 3pm
The Poke Program

11am – 12pm
Free Educational Resources: MERLOT and Beyond

12pm – 2pm
A Manual Stair-Climbing Wheelchair
Demonstration of World Possible’s Remote Areas Community Hotspots for Education and Learning (RACHEL) Project
Hacking Diabetes
Learning Health System – Consumer Application

1pm – 4pm
Michigan Engineered for All Libes (M-HEAL)

2pm – 4pm
Open Source Mosquito Trap

Good Lord, People, 23andMe is NOT Dead!

Reposting from my personal genomics blog because I think it is important also for the audience of this blog.


23andMe

Good Lord, people, 23andMe is NOT dead! Or closed, or no longer taking orders, or anything like that. I hear this a lot.

“You know, I always wanted to get my genome tested. I was going to try 23andMe, but then the FDA shut them down. Oh, well, missed my chance. [sigh]”

NO! You did NOT miss your chance. Firstly, 23andMe is not closed for business. They still will take your money and your sample. They still will analyze the sample and give you results. From what I’ve been seeing in the results from folk I’ve been helping to look at their data, 23andMe seems to be running the test exactly the same way they always did, for the same SNPs.

They simply are, at this time, not offering their health reports to new customers. It isn’t the data that has changed – it iw what analysis is shared with the customer. Old fogies like me who got their tests done before the FDA folderol” still have access to our old 23andMe health reports, and they continue to improve them.

I have heard nothing to indicate that 23andMe are not working with the FDA to try to make it possible to release health reports again in the future. Issues around that get complicated and I’m going to save them for a later post. Right now, what if you wanted a test for some genetic health information? Can you do it? How long will you have to wait to find out the answers to your health questions?

You can still do it. It isn’t as easy as it was before, but it can be done. I’ve been spending a lot of time talking people through how to do this, and it is time to write it down. If nothing else, it will save me time. This will be the short short version, and I can answer more detailed questions and describe specifics, maybe give an example or two or three.

FIRST, THE DISCLAIMER

Risk is Not Just Genes

Making sense of genetic information is complicated even for experts, which most of us are not. Of course, part of the irony of looking at genetics for health conditions is that most of the time what causes the condition is not just the genetics, but genes PLUS something else. If you don’t find the genes for something, that doesn’t mean you can’t get it; if you do find the genes for something, it doesn’t mean you will get it. It is hardly ever a case of this=that.

What Does Risk Mean, Anyway?

There is also the challenge of figuring out how important the risk is, and whether or not to do something about it. So, my personal risk of celiac disease is over 4 times normal. Wow! That sounds like a lot, doesn’t it? But 4 times normal for celiac risk is still only 1 in 20 people, because normal is about 1 in a hundred. I know someone with celiac risk 17 times normal, which is 1 in 4 people. That’s getting to be pretty serious! But, while celiac is dangerous, it isn’t one of those conditions that is immediately deadly or painful. And my friend still has a 3 in 4 chance of NOT getting celiac, and that is a lifetime risk.

On the other hand, my risk of venous thromboembolism (VTE) is 1.5 times normal. That doesn’t sound like much does it? It’s higher, but only a little bit. So we don’t really need to worry about it, do we? Well, yes. VTE can kill you on the spot, and it is incredibly painful. And normal is 1 in 10 people for lifetime risk. For me, the risk is closer to 1 in 7.

Given that, according to 23andMe, my genetic risk of celiac is roughly 1/20 and my risk of VTE is 1/7, and adding in the comparative dangers of the two diseases, my docs got all excited about the VTE, and not terribly about the celiac. I hope you understand why now, and also a bit more about why genetic risk is complicated.

On Asking for Help

Last part of the disclaimer.

For both of these, celiac and VTE, 23andMe looks at SOME of the genes and SNPs known to be associated with the condition, but not ALL of them. So whatever 23andMe tells me about risk is only part of the picture. It looks at the most important genes, but is still only part of the picture. That’s why you need experts to put all the pieces together, and get more information to fill in the gaps from the 23andMe test.

Everyone always says, “Ask your doctor,” when it comes to finding something puzzling, confusing, contradictory, or worrisome in your genetic tests. I did, and found that most of my doctors didn’t have the expertise to make more out of it than I did. Some poohpoohed the 23andMe results, others made clinical decisions based on them without verifying with other tests, some asked for more medical tests to expand upon what 23andMe had, and one said, “You know more about this than I do, but I’m going to learn.” Here is a quote from an NEJM article a few months ago about the risks and benefits of trusting direct-to-consumer personal genomic services such as 23andMe.

“Clinicians will be central to helping consumer–patients use genomic information to make health decisions. Any regulatory regime must recognize this reality by doing more than simply adding the tagline on most consumer ads for prescription drugs: “Ask your physician.” That is insufficient guidance unless your physician has ready access to a clinical geneticist or genetic counselor.” Annas GJ, Elias S. 23andMe and the FDA. N Engl J Med 2014; 370:985-988. http://www.nejm.org/doi/full/10.1056/NEJMp1316367

Some of the personal genomics service offer phone-in access to genetic counselors. I tried that, and didn’t get helpful answers there, either. Even worse, one of the answers I got was blatantly wrong. It may have been just the genetic counselor who I happened to be talking with, so don’t judge the whole profession by that one person, but do be prepared to keep looking for info if needed. Where I found the most helpful information was in the 23andMe forums, BUT a lot of the info there was unreliable, and I had to sort out what was helpful and what wasn’t.

So, my recommendation is, absolutely DO ask your doctor, ask a genetic counselor if you can, but that might not be enough. You might need to do more research on your own, or find someone you trust to help you with this.

What Good Is It?

So, what good is it then? It gives you clues. Like a detective, you take the clues and look for more information, or ask for more thorough testing, or raise questions that weren’t being asked or addressed before. Some of the clues will be red herrings. Some of them may lead you to a prized solution. For me, these clues ended up dramatically improving my quality of life, and may have even saved my life.


So, now, the short short version. And PLEASE, if someone more expert than me with genomic data reads this and spots any errors, please say so!

PART ONE

1. Get your 23andMe test done.

Pic of the Day - PGenPGEN, Take 2

2. Log in at the 23andMe web site when you are notified that your results are ready.

23andMe

3. Click: Browse raw data.
23andMe: Getting to your raw data

It should look like this:

23andMe: Browse Raw Data

4. Click: Download raw data.
23andMe: Download Raw Data

5. Complete security procedure (log in again, answer security questions, etc.). It should look like this.

23andMe: Downloading Raw Data

6. Answer the question about what type of data and format you want. NOTE: I always choose ALL DNA, unless you have something else specifically in mind.

23andMe: Downloading ALL Your Raw Data Or ...

7. Find the file (which will be named something like genome_Firstname_Lastname_Full_12345678901234.txt)

PART TWO (A): Easier Way

Genetic Genie

Now you have choices. You can dig into the information the easier way, or the less easy way. Let’s start with the easier way.

1. Select a tool to do what you want with your data. There are LOTS of tools people have built to do useful things with 23andMe data files. One of my favorites is Genetic Genie, because it tells you about the MTHFR gene which has become so important in my life. I also am spending a lot of time with Promethease because it is so complete compared to most other 23andMe analysis tools. Lets start with these.

2. Go to the tool of your choice, such as:

Genetic Genie: http://geneticgenie.org/

Promethease: http://www.snpedia.com/index.php/Promethease

3. Follow the directions at the tool, but this almost always requires you to upload your 23andMe data file. Here are more details about doing this with Genetic Genie.

4. Last come what is always the tricky part — making sense of the information you get. That’s worth several posts, but for starters the main point to remember is that the 23andMe test is a place to start, not a final answer. In Genetic Genie, the code, analysis, and text are written by engaged amateurs, not by doctors or genetic counselors. They worked hard, collaborated with a lot of other people, and did a lot of research, but it isn’t going to say the same things your doctor might.

More Tools

23andMe: Tools for Everyone http://www.23andyou.com/3rdparty
NOTE: When 23andMe took out the health reports, they also edited this page to remove links to tools that provide health data from 23andMe data. So, this is interesting and useful, but not sufficient. You’ll have to look somewhere else for most tools.

23++ Chrome Extension: Get more from your data:
http://23pp.david-web.co.uk/getting-more-from-your-data/

Confessions of a Cryokid: Top 10 things to do with your FTDNA raw data (2011) http://cryokidconfessions.blogspot.com/2011/06/top-10-things-to-do-with-your-ftdna-raw.html

Genetic Genealogist: What Else Can I Do With My DNA Results: http://www.thegeneticgenealogist.com/2013/09/22/what-else-can-i-do-with-my-dna-test-results/

International Society of Genetic Genealogy: Autosomal DNA Tools: http://www.isogg.org/wiki/Autosomal_DNA_tools

Resqua: Q: What should I do after generating my Gene variance report? http://resqua.com/100005927200207/what-should-i-do-after-generating-my-gene-variance-report

Think Exponential: Get SNPd! http://thinkexponential.com/2013/01/10/why-you-should-get-snped/

PART TWO (B): Less Easy Way

Linking Disease Associations with Regulatory Information in the Human Genome

Actually, there are a LOT of different “less easy ways.” You can open the raw data file in a text editor and search manually for specific pieces of information. Or, if you code, you can write a little program to do some of the hard work for you.

Basically, it comes down to doing a lot of research, the hard way, by hand. But, believe it or not, I am doing it. I’ve had a lot of help from people who offered tips or comments in the 23andMe or MTHFR.net forums, on Facebook, on Twitter, and comments on these blogs. I am NOT an expert, but like most readers of this blog, just someone who wants or needs to know more. This is what I’ve learned and figured out on my own, offered as an example, nothing more.

Critical Background

23andMe gives SNP-based data. SNP stands for single nucleotide polymorphism. Polymorphism means something that can be itself but in different ways, our eyes are eyes whether they are blue or brown or hazel or violet or any other natural eye color. I won’t give an introduction to genetics here, but there are several online resources that explain these ideas, with one of the best resources being Genetic Home Reference from the US government. Depending on how much you want to know, you may wish to take the Coursera courses Introduction to Genetics and Evolution (Duke U) or Experimental Genome Science (U Penn).

1. What SNPs do you want to know about? Check here:

RegulomeDB (Stanford): Linking Disease Associations with Regulatory Information in the Human Genome: http://regulomedb.org/GWAS/

I have also found SNPs of interest in research articles, PUBMED, and other places, but this is a good start. The SNP identifier (what you need) will look something like this:

rs2187668

2. Find out which polymorphism is the one considered “healthy” or “normal”, and which one is the one associated with risk of disease? These maybe called “risk alleles” or
simply polymorphisms.

For example, for SNP “rs2187668” (one of the celiac risk SNPs) the risk indicator is (T), while the normal is (C).

3. Open your 23andMe raw data file in a text editor, like WordPad (Windows) or TextEdit or TextWrangler (Macintosh).

4. Search for the SNP you want to know about. The data will be in four columns:
– RSID
– Chromosome
– Position
– Genotype
You need to know about the first and last columns, RSID and Genotype. It will look a little like this.

rsid…..chromosome…..position…..genotype
… [many other rows of data] …
rs2187668…..6………32605884…..CT

So, this person (me) has for that SNP one risk allele “T,” (which I happen to know is from my dad, by comparing it to his scan) and one normal allele “C,” (which must, by default, be from my mom, since for every gene pair we have gotten one from each parent).

5. Repeat for all the other SNPs associated with the condition you are researching.

6. Search for more information and articles about those SNPs, the condition, and more. You can’t make sense of this without more information. And ask lots of questions.

More Tools

ENCODE:
About: http://www.genome.gov/encode/
Data: http://genome.ucsc.edu/encode/

ENSEMBL Genome Browser: http://useast.ensembl.org/

OpenSNP: https://opensnp.org/ OR https://opensnp.org/snps/

SNPedia: http://www.snpedia.com/

UCSC Genome Browser: http://genome.ucsc.edu/

About Make & Takes for Health (#makehealth)

#UMSIMakerfest !!!

As people start to think about getting involved with the Make Health Fest, we are hearing a lot of three questions in particular.

1) What is a maker fest or maker faire?
2) If I want to have a booth, I’m supposed to have a Make & Take? What does that mean?
3) I’m a geek / tinker / hacker from way back, and I’d like to be involved, but I’m not sure if what I do connects with health enough to qualify. What do you mean, “relates to health”?

Last week we addressed #1 in a post by me and another by Joyce; this post is for question #2 on Make&Takes; and hopefully tomorrow will have a post for question #3, connecting making to health.

Part of the confusion with the phrase “Make and Take” might be that the phrase means one thing to folk in the maker community and something else to the world at large. After all, this is summer, and there are potlucks and backyard picnics galore! I picked up a magazine called “Make & Take” that was all about recipes for cooking for potlucks and picnics. You make the food, and then you take it to the party! Or the other “Make & Take” is planning for road trips with the kids — make games or guides or handouts to take for entertaining the kids in the family car while you drive somewhere on vacation, or for teachers or homeschooling. This is a little different.

What makes a maker event so very different from the usual science fair or health fair or vendor exhibit is the actual MAKING. Booths and demos and speakers all are not just saying, “I can do something cool,” or “I have information to share with you,” but rather, “Can I show you how to do this cool thing? Come here and try it yourself!” I always wish I had a month at each Maker Faire instead of an afternoon! I want to learn how to do everything!

The idea of “Make and Take” is to, (1), have something at the booth that people do with their own hands, beyond showing them how, and (2) have something they can take away with them. Ideally, the part they take away is something they actually made, but to be honest, that’s an ideal that is rarely achieved. Usually, people in the booths do a demo and give away a sample; or they give a handout on how to do what they showed you. Often, they’ll let you practice making something at the event, but you may or may not be able to take it with you. Here are some examples of “Make and Take” activities from other fairs and fests, and then I’ll share some examples of health-themed make and take ideas. Feel free to adopt one for our fest if you want, but even better, come up with your own idea!

TAKE

Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2014Ann Arbor Mini Maker Faire 2014

Level one is to have something people can take away. That’s pretty easy, and most everyone can come up with examples: pins, buttons, stickers, labels, bookmarks, patterns, resource lists, stories, web links, open source code repositories, free apps to download later, free samples, how to and DIY guide sheets, … Remember! At the “take” level of “make & take” you really need to combine it with a live demo at the very least.

MAKE OR DO

Most of the examples I have are of “Make” or “Do” types of activities. That is the real focus in maker events. These are examples from maker events that were not focused on health, so think of them more as inspiration rather than direct models for what you might do.

Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2014

Learning models and toys, games to play that teach concepts or build skills, art and design both to create new things and also relieve stress.

#UMSIMakerfest !!!Ann Arbor Mini Maker Faire 2014Ann Arbor Mini Maker Faire 2013

Skills building, stress relief, practical applications, comfort, building or designing your own tools.

#UMSIMakerfest !!!Maker Faire Detroit 2013Detroit Maker Faire 2013

Starting with LEGOs might seem frivolous, but it isn’t. Recently a high school student built a Braille printer out of LEGOs! Let kids start with various materials that appeal to them, and who knows what they’ll come up with! Let them test out using new tech and imaging uses for it. For the laser light show, the kids interacted with the system to make the show do what they wanted. Real hands on experience builds both skills and interest.

Detroit Maker Faire 2013Ann Arbor Mini Maker Faire 2014Lego blue heart

Sometimes it just isn’t practical to let folk take what they made with them, or the set up is complicated, messy, requires fancy equipment (like the weaving loom above), you don’t have very many (like the electronic musical instruments in the middle picture), or is costly (supplying every kid who walks in with all the LEGOs they want? Yeah, sure).

Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2013

Skills building. Say that three times. Training kits, tutorials, hands-on, basic skills.

MAKE AND TAKE

#UMSIMakerfest !!!Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2014
Ann Arbor Mini Maker Faire 2013Ann Arbor Mini Maker Faire 2014Ann Arbor Mini Maker Faire 2013

The “Make and Takes” where you actually get to make something and take it with you? That is totally the coolest, if you can manage it. Maybe you make part of it ahead of time (decorating cookies, anyone?). Or connect something people make (paper airplane) with something they do (turbo charged take-off!) and then let folk take the paper airplane with them. Or print off a paper model pattern and walk them through making one. Or do a demo of sustainable gardening, and let them have a taste of a salad with the same type of plants, or give them seeds to take home. You get the idea.

HEALTH MAKE & TAKES

Those were all examples of “Make and Takes” from Maker Faires usually more generally focused on science and technology. We were brainstorming ideas for “Make and Takes” more along the idea of health, and realized many of the same ideas work. Sustainable gardening connects with a lot of public health issues — diet, nutrition, food deserts, green living, etc. We took our ideas and clustered them into ideas that are clearly and explicitly medical in nature as well as things made with easy-to-find ingredients from around normal homes and schools. Then someone had the great idea of a Fix-It Booth for folk who want to tweak or repair their own medical devices at home (crutches, hearing aids, jar grippers, etc.). We don’t know which of these will happen, if any, because we’re still gathering volunteers, speakers, presenters, and so forth. But if you want inspiration for ideas for a booth, here are some that might give you ideas.

* Bee-safe wasp catcher
* DIY lip gloss
* DIY lotion
* Duct Tape for Health
* First Aid Kit Supplies
* Fruit fly catcher
* Home Cleansers & the Microbiome
* Kitchen herb garden
* Mechanical Paper Hand
* MEDIKit (Medical Education Design and Invention Kit)
* Melon Brain
* Miura Battery Fold
* Neck Pillow
* Origami DNA
* Origami Microcrope
* Radish Rose
* Seed bombs
* Soap-making
* Stethoscope
* Superglue Uses for Health
* Vegetable flowers
* Wine bottle garden
* Wrist brace/splint

Want more ideas? Here are some of the sources that inspired us.

Cari Young: Library Makerspace ideas on Pinterest: http://www.pinterest.com/cari_young/library-makerspaces/

DIY.org: https://diy.org/tags/medicine

Franklin Institute: Science DIY: http://www.pinterest.com/TheFranklin/science-diy/

Instructables: http://www.instructables.com/howto/health/

Little Devices: 7 DIY Medical Technologies You Can Build At Home: http://littledevices.org/research/7-diy-medical-technologies-you-can-build-at-home/

MakerNurse: http://makernurse.org

Naked Scientists: Kitchen Science: http://www.thenakedscientists.com/HTML/content/kitchenscience/

Pakistan Science Club: http://www.paksc.org/pk/diy-projects

Wiki How: http://www.wikihow.com/Special:GoogSearch?cx=008953293426798287586%3Amr-gwotjmbs&cof=FORID%3A10&ie=UTF-8&q=health+OR+medicine&siteurl=www.wikihow.com%2FMain-Page

What if your patient is a self-tracker? — Hashtags of the Week (HOTW): (Week of February 17, 2014)

Quantified Self

There were many Twitter tags and events last week that I really wanted to profile (and I hope there is time in the future to come back to some of the others!). The reason this topic won out over the others is because I participated in TWO events that focused on this question! One was the University of Michigan Pediatric Grand Rounds (#umpedsgr), with guest speaker Alex Djuricich, MD.

You can see a Storify of the complete Twitter stream from the talk here: Emerging Technology in Medicine: Friend or Foe?.

Alex launched his presentation with a case study of a young man with high blood pressure who comes to the clinic with his iPhone and app, wanting to share his data on his blood pressure trends.

Alex also got most of the audience livetweeting, which turns out to be what he’s used to at Indiana University, where they’ve livetweeted grand rounds for the past two years at #iupedsgrrounds.

He started with that case, branched out to include some discussion of types of tech that track or capture data about patients, and then swung back to the original case. Here are a few tweets from that talk.

I was absolutely blown away when the same idea came up last night at the weekly #HCSM chat.

This conversation was incredibly powerful. Clinicians and patients going back and forth, examples of data and tools, best practices, and more. These are just a very few of the tweets, with more archived in Symplur.

The conversation continued far past these thoughts, including challenges integrating data into electronic health records, balance between access to data points and ease of use for clinicians, training issues, how to integrate n=1 “trials” with population-based data, and much more. Truly a chat worth reading through in its entirely.


First posted at THL Blog: http://thlibrary.wordpress.com/2014/02/17/what-if-your-patient-is-a-self-tracker-hashtags-of-the-week-hotw-week-of-february-17-2014/

Hashtags of the Week (HOTW): Journals Clubs on Twitter (Week of September 9, 2013)

Last week, I discovered there are several medical or healthcare related journal clubs running with Twitter as the platform for the conversation, or to coordinate a face-to-face event.

I found even more, although I don’t suppose I should really be surprised.

* General (#TwitJC)
* Ambulance (#AmbJC)
* Anesthesia & Critical Care
* Biological and Computational Acoustic Processing Journal Club
* Clinical Psychology (#cpjc)
* Evidence-Based Practice
* HCPs
* Hospitalists
* ICU & Critical Care
* IU Bone Journal Club (#iubonejc)
* Microbiology
* Physiotherapy
* Registered Dieticians (#rdjc)
* Social Work Education
* Urology (#urojc)
* Water, Sanitation, & Hygiene

People share useful information, distill nuggets, and make intelligent observations and criticism, which lead to rich conversations.

They recognize the importance of the journal clubs in showing the public important aspects of science communication and critical thinking about science.

They have different practices, but some have really clever tips and tricks for engaging their audience.

Here are some of the papers that have been making the rounds this way, either for the journal club conversation, or proposed for consideration.

Ricard, Jean-Damien MD, PhD1,2; Salomon, Laurence MD, PhD3; Boyer, Alexandre MD4; Thiery, Guillaume MD5; Meybeck, Agnes MD1; Roy, Carine MSc6; Pasquet, Blandine MSc6; Le Mière, Eric MD1; Dreyfuss, Didier. Central or Peripheral Catheters for Initial Venous Access of ICU Patients: A Randomized Controlled Trial. Critical Care Medicine September 2013 41(9):2108-2115. doi: 10.1097/CCM.0b013e31828a42c5 http://journals.lww.com/ccmjournal/Abstract/2013/09000/Central_or_Peripheral_Catheters_for_Initial_Venous.5.aspx

Goodacre S, Cohen J, Bradburn M, Gray A, Benger J, Coats T, on behalf of the 3Mg Research Team. Intravenous or nebulised magnesium sulphate versus standard therapy for severe acute asthma (3Mg trial): a double-blind, randomised controlled trial. Lancet Respiratory Medicine June 2013 1(4):293-300. http://www.thelancet.com/journals/lanres/article/PIIS2213-2600(13)70070-5/fulltext doi:10.1016/S2213-2600(13)70070-5

Nor’azim Mohd Yunos, MD; Rinaldo Bellomo, MD, FCICM; Colin Hegarty, BSc; David Story, MD; Lisa Ho, MClinPharm; Michael Bailey, PhD.
Association Between a Chloride-Liberal vs Chloride-Restrictive Intravenous Fluid Administration Strategy and Kidney Injury in Critically Ill Adults. JAMA. 2012;308(15):1566-1572. doi:10.1001/jama.2012.13356. http://jama.jamanetwork.com/article.aspx?articleid=1383234

Sharma S, Sharma N, Sharma R. OA15.04. Accelerating the healing of bone fracture using homeopathy: a prospective, randomized double-blind controlled study. BMC Complementary and Alternative Medicine 2012, 12(Suppl 1):O61. http://www.biomedcentral.com/1472-6882/12/S1/O61

Matsuda S, Liu H, Kouzuma A, Watanabe K, Hashimoto K, et al. (2013) Electrochemical Gating of Tricarboxylic Acid Cycle in Electricity-Producing Bacterial Cells of Shewanella. PLoS ONE 8(8): e72901. doi:10.1371/journal.pone.0072901 http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0072901

Vartul Sangal, Peter C. Fineran and Paul A. Hoskisson. Novel configurations of Type I and II CRISPR-Cas systems in Corynebacterium diphtheriae. Microbiology Papers in Press. Published July 31, 2013 as doi:10.1099/mic.0.070235-0. http://mic.sgmjournals.org/content/early/2013/07/30/mic.0.070235-0.full.pdf+html

Louie S, Zeki AA, Schivo M, Chan AL, Yoneda KY, Avdalovic M, Morrissey BM, Albertson TE. The asthma-chronic obstructive pulmonary disease overlap syndrome: pharmacotherapeutic considerations. Expert Rev Clin Pharmacol. 2013 Mar;6(2):197-219 http://www.ncbi.nlm.nih.gov/pubmed/23473596?dopt=Abstract

Donnenberg MS, Narayanan S. How to diagnose a foodborne illness. Infect Dis Clin North Am. 2013 Sep;27(3):535-54. http://www.ncbi.nlm.nih.gov/pubmed/24011829?dopt=Abstract

Thompson IM Jr, Goodman PJ, Tangen CM, Parnes HL, Minasian LM, Godley PA, Lucia MS, Ford LG. Long-term survival of participants in the prostate cancer prevention trial. N Engl J Med. 2013 Aug 15;369(7):603-10. doi: 10.1056/NEJMoa1215932. http://www.nejm.org/doi/full/10.1056/NEJMoa1215932

S. J. Shepherd*, P. R. Gibson. Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease. Journal of Human Nutrition and Dietetics 26(4):349–358, August 2013. DOI: 10.1111/jhn.12018 http://onlinelibrary.wiley.com/doi/10.1111/jhn.12018/abstract

J. R. Zahar, M. Garrouste-Orgeas, A. Vesin, C. Schwebel, A. Bonadona, F. Philippart, C. Ara-Somohano, B. Misset, J. F. Timsit. Impact of contact isolation for multidrug-resistant organisms on the occurrence of medical errors and adverse events. Intensive Care Medicine August 2013. Online first. http://icmjournal.esicm.org/journals/abstract.html?v=0&j=134&i=0&a=3071_10.1007_s00134-013-3071-0&doi=

Max Garagnani, Friedemann Pulvermüller. From sounds to words: A neurocomputational model of adaptation, inhibition and memory processes in auditory change detection. NeuroImage
54(1):170–181, 1 January 2011. http://www.sciencedirect.com/science/article/pii/S1053811910011134

Andersen TL, Abdelgawad ME, Kristensen HB, Hauge EM, Rolighed L, Bollerslev J, Kjærsgaard-Andersen P, Delaisse JM. Understanding coupling between bone resorption and formation: are reversal cells the missing link? Am J Pathol. 2013 Jul;183(1):235-46. doi: 10.1016/j.ajpath.2013.03.006. Epub 2013 Jun 6. http://www.ncbi.nlm.nih.gov/pubmed/23747107

Njeru, Jeremia (2006). The urban political ecology of plastic bag waste problem in Nairobi, Kenya. Geoforum (37). doi: 10.1016/j.geoforum.2006.03.003 http://www.sciencedirect.com/science/article/pii/S001671850600042X


Originally posted at THL Blog: http://wp.me/p1v84h-1rY

“How Many Hives?”: Social Media Can Prevent a Crisis with Storytelling, Engagement, & Training

Michigan RenFest 2010

This post is about food allergies and communication strategies. But let’s step back a bit and see how I got here.

Yesterday morning early (for me, but not for most docs), I attended the local Pediatrics Grand Rounds with presenter Joyce Lee. Joyce was talking on Twitter uses for clinicians and researchers. That will be another blogpost, once I have a chance to work through some of the content presented. For today, I wanted to highlight one particular bit that Joyce presented about kids with food allergies. I had somehow previously missed this, and it is too good to miss! I am particularly interested in this since both my son and I also have food allergies.

Joyce is a pediatrician (I’m oversimplifying), and a mom of kids with pretty severe food allergies. She’s also very engaged in new technologies and is interested in new learning modalities and social media. That gives a bit of context for how she and her son came up with these phenomenal and effective ways for him to both learn and communicate what he needs to have for health care crisis prevention and support from the people around him. Frankly, from what I’m seeing here, he is MUCH better at being aware of his needs and communicating them than I am. This is also a very cool idea that I wish I had thought of when my kid was in need of this. I have a lot to learn here, and this strategy would have prevented a whole boatload of problems & events for our family over several years. This is GENIUS, pure and simple.

Joyce’s son, “B,” has severe food allergies. Note that they use a letter “B” instead of his name? This is to protect his privacy on social media. This is a good best practice, and one the kids should learn and adopt as well as the parents and teachers. And family friends, and pastors, and acquaintances, and … EVERYONE! Please, DON’T use a kid’s real name online!

The problem with food allergies, which I’ve faced, is at school other kids and teachers don’t understand and can inadvertently poison the poor kid. I remember how I wept with anger and frustration when I discovered that the school therapist my son was seeing was rewarding him for good behavior with foods that triggered undesirable behavior, and then sending him back into the mainstream classroom. I bet his main teacher wasn’t too happy either, and Lord alone knows how much school he missed from the migraines triggered by the dangerous foods. For B, a mistake like that could kill him.

PART ONE

So now, Joyce’s son has a blog.

I Have Food Allergies
I Have Food Allergies:
http://ihavefoodallergies.tumblr.com/

On his blog, he has his Youtube videos. This is the storytelling part of the post. Part One describes how to tell if he’s having a reaction, and what to do. Part Two describes how to avoid poisoning him, since it isn’t always obvious (as I am STILL learning, with my own food sensitivities). Here is the first video. When she showed this in Grand Rounds, the entire room full of doctors and nurses and other hospital staff were ooohing and aaahing and laughing. It is a very charming and effective way to deliver this lifesaving content. That’s the training part.


Allergy Action Plan (Antihistamine versus Epipen) http://www.youtube.com/watch?v=6Ymah1199xo

Joyce wrote a separate blogpost that explained the background, mechanics, theory, and how this was made.

Online Peer to Peer Education or shall we call it Peer to Teacher Education?
http://joycelee.tumblr.com/post/31910454867/online-peer-to-peer-education-or-shall-we-call-it

This is pretty cool stuff. Even more cool, the school decided to show the video to all of the kids in the school, 700 of them, and all the teachers. That’s the engagement part. Even more engagement, a blogpost by Wendy Sue Swanson (a.k.a. Seattle Mama Doc) brought more attention to this. Would this video help others understand food allergies? Does this training from this one young boy extrapolate to other kids and families?

Bring Paperwork To Life: Food Allergies:
http://seattlemamadoc.seattlechildrens.org/bring-paperwork-to-life-food-allergies/

PART TWO

Now, for comparison, let’s take a look at what a food allergy action plan normally looks like.

Food Allergy Action Plan
Food Allergy Research & Education (FARE) (www.FoodAllergy.Org): Food Allergy and Anaphylaxis Emergency Care Plan: http://www.foodallergy.org/document.doc?id=234

I’ll tell you, this is vastly more attractive, clear, and engaging than what they had when my now-college-age son was in school. Still, despite the vast improvements, it is a little scary to read through, especially if you are the one responsible for saving the life of someone else’s kid. It gives you the information, but it doesn’t make you laugh, or hear the kid’s voice when they describe how it feels for them when things go wrong.

The second video is my favorite. Less dire, but it covers all the information I need so desperately to communicate to my colleagues, restaurants, and friends. How do you not poison me? Wash the table, wash your hands, be wary of tricky foods. I especially love the part about tricky foods.


Allergy Action Plan, Part 2 (Please don’t poison me) http://www.youtube.com/watch?v=EGG6_EuK3oM

I wish so much I could make every restaurant employee in the country watch this video. And have it translated into other languages. My family spends a lot of time embedded in Japanese cultural activities, which includes Japanese restaurants. My main problem is with gluten, and you’d think I’d be safe there since their cuisine is based heavily on rice. You’d have trouble believing some of the bizarre experiences I’ve had in Japanese restaurants because of the language barrier — servers who bring me the gluten-free soy sauce, and then bring my food already doused with regular soy sauce. Oh, miso? Yes, it has wheat in it. (After I’ve eaten it and my mouth is tingling and swelling.) So why did you bring it to me? [Imagine a cranky face. More than cranky.]

Here Joyce explains more of the outcomes from the first video and considers aspect that might explain why it has proved so effective.

Allergy Action Plan Part 2: http://joycelee.tumblr.com/post/36728442953/allergy-action-plan-part-2-its-been-a-while-since

PART THREE

Did they stop there? Of course not!

One of the challenges of food allergies is that despite massive fine-tuning of your lifestyle, education of others, and so forth, there is no point at which you are completely safe, no point at which you can stop being aware, when you can rest and relax and trust that you are safe. But all of us have times when we’re tired, worn out, just not on top of our game, and must trust others to watch out for us when we aren’t quite doing such a great job ourselves. Something always happens. It is just when you get to the point of feeling safe, let down your guard, and that’s when it happens.

The videos are awesome and amazing, but what about when you aren’t online, when the class is outside or on a field trip? Joyce and B have made nametags, bookbag lists, and collaborated on making a booklet with his information. Kind of a quick reference as a backup for the content in the videos. Even better, they’ve made the original files available free online for other families and parents to use.

DESIGNING FOR HEALTH: A PEDIATRIC PROTOTYPE FOCUSED ON ALLERGIES http://joycelee.tumblr.com/post/50507408498/designing-for-health-a-pediatric-prototype-focused-on

Check out the blogpost for the other file links, but here is the PDF of the insides of the booklet.

Allergy Booklet: https://dl.dropboxusercontent.com/u/1112237/nametag/allergy%20booklet_51213.pdf

MORE

Joyce is not the only parent using social media to get out their story about food allergies, trying to get people to understand what it’s like. The more people understand, the safer life will be for those of us with food allergies and sensitivities. Here is another post from Seattle Mama Doc to round out the information in the post, and provide more context. These aren’t part of Joyce’s official story, but I bet she’s familiar with this stories. I know I am.

Four Hours on a School Bus: http://seattlemamadoc.seattlechildrens.org/four-hours-on-a-school-bus/

Here is a little more information. The basics, all in one small tidy package, and a couple useful links to learn more.

Don’t Be Shy About Food Allergies http://seattlemamadoc.seattlechildrens.org/dont-be-shy-about-food-allergies/

Food Allergy Research and Education (FARE): http://www.foodallergy.org/

Kids with Food Allergies: http://community.kidswithfoodallergies.org/pages/community

#CoolToys: Lifestreaming

Today’s Cool Toys Conversations group met to learn more about lifestreaming (not livestreaming, as some attendees thought). Britain Woodman was our fearless leader for the day, and folk were encouraged to also look at how Shawn Sieg lives the lifestreaming life. Here are a few highlights from the meeting.

What’s Lifestreaming?

“A lifestream is a time-ordered stream of documents that functions as a diary of your electronic life; every document you create and every document other people send you is stored in your lifestream.”
The Yale Lifestreams Project Page, Circa 1996: http://cs-www.cs.yale.edu/homes/freeman/lifestreams.html

Why Lifestream?

Other reasons discussed included adding value for others, transparency, making yourself and your personal brand more discoverable, ease of discovery for others as well as for yourself, as an external memory aid, simplifying your content production, searchability, safety (crime prevention), and more. One motivator for some is to connect various information streams to discover new insights, especially in the context of quantified-self and self-tracking for health. MakeUseOf posted about incentives that drive lifestreaming. There was an interesting conversation around Robert Scoble’s post on this back in 2009, but evidently the original post has disappeared or moved with the loss of Posterous.

The new billion-dollar opportunity: real-time-web curation. (Read the comments on this). http://friendfeed.com/scobleizer/db61f306/new-billion-dollar-opportunity-real-time-web

What is StoryTlr?

StoryTlr

Storytlr is a very useful tool for aggregating and (partially) archiving your own content from various cloud-based services and social media streams into a personal space on your own server. It primarily archives the text in an SQL database format, with thumbnails for images, and links to the full images and videos. It does not archive the full images or videos. It also facilitates creating stories from your various media around a particular event or day. Storytlr is open source, with the source code on GitHub.

“You can import from 18 popular sources, easily post your own updates, pick from a range of styles and create compelling stories from your content.”

What if I don’t have my own server?

More Info About Lifestreaming & Lifelogging

Lifeloggers from Memoto on Vimeo.

Lifestream Blog: Lifelogging: Resources: http://lifestreamblog.com/lifelogging/

THEN

Lifelogging, An Inevitability (2007): http://www.kk.org/thetechnium/archives/2007/02/lifelogging_an.php

Karapanos, Evangelos, PhD. Blog http://www.ekarapanos.com/blog.html
[NOTE: Fascinating entries such as “Supporting Diary Studies with Lifelogging” and “Lifelogging tools for patients suffering episodic memory impairment.”]

Krynsky, Mark. Understanding the Value of Lifestreaming (2009): http://lifestreamblog.com/understanding-the-value-of-lifestreaming/

Stanford Students Design for Lifelogging (2011): http://quantifiedself.com/2011/03/stanford-students-design-for-lifelogging/

NOW

How Lifelogging is Transforming the Way We Remember, Track Our Lives (2013) http://www.wired.com/insights/2013/06/how-lifelogging-is-transforming-the-way-we-remember-track-our-lives/

I always feel like somebody’s watching me: The effect of wearable cameras (2013): http://connect.dpreview.com/post/8900204429/wearable-camera-affect

‘Life logging’ app Saga lets you share every single moment of your life (2013): http://venturebeat.com/2013/07/30/life-logging-app-saga-lets-you-share-every-single-moment-of-your-life/

Logging our lives with wearable tech (2013): http://www.deccanherald.com/content/339162/logging-our-lives-wearable-tech.html

Using a Smartphone’s Eyes and Ears to Log Your Every Move | MIT Technology Review (2013) http://www.technologyreview.com/news/516566/using-a-smartphones-eyes-and-ears-to-log-your-every-move/

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/