Author Archives: pfanderson

Happy National DNA Day!

Here are some things I’ve stumbled on recently that I think might make playing with DNA more fun or interesting, and help integrate the process of learning about our own personal DNA more relevant to our own personal health. Good stuff, eh?

Genes for Good
Genes For Good
http://genesforgood.sph.umich.edu/

“Participants in Genes for Good have a unique opportunity to learn about their health, behavior, and ancestors. Any information you provide to the study is yours to visualize using plotting tools available in the App itself. If you like, you can also download the information. After all, it’s your information and you should be able to do with it what you wish.”

Open Human
Open Humans
https://www.openhumans.org/

“Open Humans helps you connect to exciting and innovative research studies – and gives you access to the data they produce from you.
– find exciting studies to join
– access to your raw data
– share your data with others
– connect with other members
– let others see your contribution to science!”

NOTE: They are partners with the Personal Genome Project AND American Gut!

Apple ResearchKit
Apple Research Kit
http://www.apple.com/researchkit

“Until now, taking part in a medical study has usually required traveling to a hospital or facility to complete tasks and fill out questionnaires. With ResearchKit, you can use your iPhone to perform activities and generate data wherever you are, providing a source of information that is more objective than ever possible before. This is invaluable to the progress of medical research — and we can all have a hand in it.
What’s more, many of the apps built with ResearchKit will enable you to track your own data and potentially discover correlations between symptoms and daily actions such as diet or exercise.”

Apple Health Kit
Apple Health Kit
https://www.apple.com/ios/whats-new/health/

“The new Health app gives you an easy‑to‑read dashboard of your health and fitness data. And we’ve created a new tool for developers called HealthKit, which allows all the incredible health and fitness apps to work together, and work harder, for you. It just might be the beginning of a health revolution.”

Panometer (we're measuring everything)
Panometer
http://panometer.org/index.html

The Panometer is at this moment, vaporware, but I went to a presentation with the inventor and heard what he’s imagining. It’s pretty exciting. So, what if we could measure, link, and visualize in a meaningful way, our genetic data, our environment (exposome), our experience, our health metrics, our behavior, and our social streams in a way that is both private and persona, creating tools that help us make informed decisions about our lives and how to make them better and more personally satisfying? Doesn’t the idea make you feel happy?

Hedonometer
Hedonometer
http://www.hedonometer.org

Blue is for Borgs (On WAAD), Let’s Walk in Red Instead

Borg cyborg prosthetics Walk In Red

It happens every year now. I end up having a gentle, delicate but firm conversation with someone (individual or organizational representative) who really, REALLY want to do something to be supportive and help people with autism, and to do so they have jumped on the bandwagon of the “Light it up Blue” movement founded by Autism Speaks. They mean well, but they don’t realize the broader context.

BLUE = Autism Speaks

World Autism Awareness/Acceptance Day
World Autism Awareness/Acceptance Day

When the context is provided, they either say, “I didn’t know,” or “Don’t we get brownie points for good intentions?” or “Well, it might mean that for you, but not for us,” or “That’s only true in America,” or “It’s too late, we already committed.” The folk who say, “I didn’t know” are usually actually listening, and will make a change in the future. I’m not so sure about the others. I’ve written letters to companies that are “going blue” and collecting funds to donate, trying to make them more deeply aware of the impact. There are companies where I no longer shop, and have told them why. Not that it really has any significant impact, from what I can tell. And I’m afraid that each complaint, like this one, ends up instead feeding the adoption of the campaign, creating free publicity, and feeding negative messages about autism that lie at the heart of what Autism Speaks does.

Here let me explain. Briefly.

SELECTIVE TIMELINE OF AUTISM RIGHTS MOVEMENT

1970 – April chosen as National Autism Awareness Month in the United States by the Autism Society.
1995 – First Autreat, November.
2002 – Autism Awareness Year in the United Kingdom
2002 – Autism Sunday, second Sunday of February, launched in London
2005 – First Autistic Pride Day, June 18th, in Brasil with the theme “Acceptance not cure”
2005 – First Autscape began July 26, near Somerset, UK
2006 – Autism Acceptance Project founded by Estée Klar
2007 – World Autism Day designated by the United Nations
2008 – First World Autism Day, April 2
2010 – First Light It Up Blue (#LIUB) Campaign launched by Autism Speaks
2011 – Autism Acceptance Day created by Paula Durbin Westby
2015 – First Walk in Red campaign (supported by Paula Durbin Westby).

Walk In Red

You see that autism advocacy has a long and strong history, before and after the first efforts by Autism Speaks. What has happened with the Autism Speaks efforts is basically that they have, well, co-opted the idea of the World Autism Day for awareness and fundraising of their own projects. I’m serious. Here, look at some definitions of the word “co-opt.”

Free Dictionary: co-opt
“1. to choose as a member.
2. to assimilate or win over into a larger group.
3. to appropriate as one’s own; preempt.”
“3. To take or assume for one’s own use; appropriate: co-opted the criticism by embracing it.
4. To neutralize or win over (an independent minority, for example) through assimilation into an established group or culture: co-opt rebels by giving them positions of authority.”

Merriam-Webster: co-opt
“: to cause or force (someone or something) to become part of your group, movement, etc.
: to use or take control of (something) for your own purposes”
“2 a : to take into a group (as a faction, movement, or culture) : absorb, assimilate
b : take over, appropriate (a style co–opted by advertisers)”

Autism Speaks have a LOT of money behind them, connected with a lot of famous folk, and have built that into such a strong brand recognition that when you search for Autism Day in Google, you have to actually scroll way down to find the links to the United Nations, the folk who are REALLY behind it. All of the top leading links about it are for Autism Speaks and their fundraising efforts.

Google Search: Autism Day

Whoa. And again, WHOA. And the whole thing with “Blue”? That was to match the Autism Speaks logo. Yes really. So, even if people aren’t aware of it, even if they’ve forgotten, every time someone connects “blue” with “autism” they are creating more support and awareness for the organization Autism Speaks, their fundraising campaigns, their marketing, and their agendas.

Is that such a bad thing? After all, they are a charity, and the money still all goes to support people with autism, right? Wrong.

Not to say that Autism Speaks do nothing worthwhile (some of their Toolkits are genuinely useful), it is the organization’s underlying tenants are viewed with alarm within the larger autism advocacy community, who don’t necessarily have the millions of dollars to get eyes on their ideas. Here is a tiny selection illustrating some of those concerns.

Autistic Self Advocacy Network (ASAN): 2014 Joint Letter to the Sponsors of Autism Speaks

John Elder Robison: I resign my roles at Autism Speaks

ASAN Vancouver Disability Day of Mourning: Introductory Speech

Forbes: Why Autism Speaks Doesn’t Speak For Me

The Daily Beast: “Autism Speaks”- but Should Everyone Listen?

Boycott Autism Speaks

Autism Women’s Network: Is Autism Speaks a Hate Group?

The controversial and contentious dialog seems to center on these issues.

Awareness versus Acceptance

Awareness vs Pride

Assimilation versus Inclusion

Stigma versus Respect

Now, let me go back to the beginning of this post. The Borg. What the community of autism advocates is seeking is to celebrate their skills, talents, uniqueness. The United Nations theme for World Autism Day this year focuses on the value of persons with autism as employees (click on the word “inclusion” above). This has also been celebrated recently by the Wall Street Journal and Entrepreneur. In its long history, the autism advocacy movement quickly shifted from simple “awareness” to more active and joyful celebrations of the value of persons with autism. I’ve been tracking the Autism Speaks controversy for a very long time. I don’t need to explain here how what they do tends instead to undermine those happier and loftier goals.

I do have a personal stake in this. My son has autism. My brother has autism. There are some who think I have autism and was just never diagnosed. I wouldn’t be surprised. Last time I was home, I rescued this beautiful piece of blown glass made by my autistic brother, who was preparing to discard it as not meeting his standards. It wasn’t good enough. I love it, treasure it, and keep it in my office where I see it everyday.

Blown Glass (discard)

Also last time I was home, the pastor of my brother’s church made a point of telling me how important and highly valued he is in their faith community. I don’t want to hear anyone tell either my brother or my son that they aren’t good enough, or that they need to be assimilated. I have many friends who are on the autism spectrum. Some of them are even non-verbal, with what is considered severe autism. I tell you, when my friend who is non-verbal is complaining on Twitter about something her husband said to her, knowing that she couldn’t argue back … well, let’s just say, I don’t think of her as being non-verbal.

What is it that we want of people with autism? Do we want to treasure them and celebrate their uniqueness? Or …

“We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. … You will be assimilated.”

If you still think of “blue” as the color of autism, you may not even be aware how it happened, but you have already been assimilated.

MORE ON THE RHETORIC OF AUTISM

Paul Heilker and Melanie Yergeau. Autism and Rhetoric. College English 2011 73(5):485-497. http://www.jstor.org/stable/23052337?seq=1#page_scan_tab_contents

Autism and Rhetoric (a Prezi synthesizing the high points of the Heiler & Yergeau article).
https://prezi.com/kz2mvlhp-7gz/autism-and-rhetoric/

Alicia A. Broderick. Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse. Disability Studies Quarterly 2011 31(3). http://dsq-sds.org/article/view/1674/1597

Paul Heilker. Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 2012 32(4). http://dsq-sds.org/article/view/1756/3181

Emily Malabey. How the Rhetoric of Autism Speaks Has Hurt Autistic People. Council for Autism and Neurodiversity November 15, 2013. http://www.autismcouncil.org/?p=2802

PF Anderson. Beyond “Light it Up Blue” — Maybe “Light it up Gold”! https://etechlib.wordpress.com/2014/04/02/beyond-light-it-up-blue-maybe-light-it-up-gold/
(Check out the Storify of Ibby Grace presenting on this)

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/

In My “Drafts” Pile

M-BLEM Workshop at UMich

This winter has been a rough one for my family. Lots of family crises, illness, injury, etcetera. What that means is that the blog slows down, projects slow down, I get way (WAY) behind on things I wanted to do and wanted to share. In the past month, my collection of unfinished (“draft”) blog posts has exploded. What normally happens then, is that I actually finish a couple that someone asked for, whatever else is most fresh in my mind, and the rest never happen. I thought it was about time to give folk a chance to comment on what they want, so that I do write up things people have asked about. Also, several of these were planned to be brief expansions of Storifys or Slideshare decks that I made or found and wanted to share, so for those, I’ll just put links in for now, and will expand on them later, maybe, if you ask.

#a2wiad – Ann Arbor’s Stake in World Information Architecture Day

Anonymous Social Media Overview, Part Four: More on Risks, Opportunities, Benefits, Ethics

Biobanks & Biobanking

Comics & Healthcare

Cool Toys U: September 2014 Notes

Cool Toys U: October 2014 Notes

Designing a Tablet Computer for the Elderly & Technophobic

Design plus Business [NOTE: There is a LOT more I need to add into this story! Cool stuff!]

#HCSMCA on “Is Academic Peer Review a Dead Man Walking?”

Infographic of the Week: Public Attitudes to Science 2014

“Live Long & Prosper”: Can Emotional Intelligence Be Taught? #HCLDR [NOTE: Linked is Joyce’s Storify on this, but I wanted to do one with a different focus]

MBLEM Workshop

MEDLIBS on the Horizon Report 2015

My Physical Therapy & My Tech

Peer-to-Peer Sex Education in Social Media & Games

Phoebe Gloeckner

Random Round-up: Cool Things Tech is Doing with Poop

Report Out: The Happiness, Health, and Stories of Populations (#umcscs)

Selecting Online Resources for MOOCs

Sexpertise 2015

Should She? Or Shouldn’t She? Sharing YOUR Pics

Strategies for Better Science Blogging, Part 2

Symposium: Thirty Years of “Thinking Sex”

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

Hashtags of the World: The #SciArt Tweet Storm

Sonobe Ball as Gift for IV

Since I’m no longer doing hashtag posts weekly, I’m revising the acronym to “Hashtags of the World” hoping to imply basically that they are interesting. They will be interesting to me, anyway! The image at the head of this post is my most popular contribution to the #SciArt Tweet storm (a.k.a. Twitterstorm).

Help Us Start a SciArt Tweet Storm: http://blogs.scientificamerican.com/symbiartic/2015/03/01/sciart-tweet-storm/

#SciArt obviously stands for Science plus Art, and this week the tag is focused on creating international attention for science through the engaging lens of art and artists. Symbiartic, the group that is hosting this, has an excellent high-profile blog, hosted through Scientific American. They have a large following, a good core team, and have built strong relationships with a broad range of collaborators. All of that has come together for a phenomenal event and a trending hashtag. The stream for the hashtag is phenomenal. Here are a few of my favorites from the life sciences subset of the conversation.

MORE:

A Culture of Blame: Stigma in the ER (Rare Disease Day 2015)

Emergency Room Visit (November)

Today is Rare Disease Day. I love Rare Disease Day. I’ve loved it for a long time. Usually I try to blog something upbeat, useful, and inspiring (2014, 2013, 2013b, 2012), but that’s not what’s going to happen today. Today it is time for a sad, disturbing story; one of stigma, assumptions, miscommunication, misunderstanding, anger, hurt, laughter, pain; all nicely wrapped up as a great example of social media gone wrong.

Something I know from personal experience is that when someone has an undiagnosed, misdiagnosed, or mismanaged health care condition, they tend to get to a point where they spend an unusual amount of time in the Emergency Room. These are, shall we say, usually not a person’s happiest moments. People with rare conditions are more likely than not to have gone through a period of time in which their condition was not properly diagnosed. There are excellent reasons for this, with the largest one being that clinicians are taught explicitly to err on the side of assuming their patients are relatively ordinary, rather than extraordinary or unusual, or rare. This is included in medical slang as the word “zebra,” implying that people’s diagnoses are more likely to be a “horse.”

Rare Disease Day 2015
Rare Disease Day 2015, by Violent Bloom.

Thus, the patient who genuinely IS rare, while statistically unlikely to appear under the care of any particular healthcare provider is rather more likely to have experienced a great deal of misguided, inappropriate, and ineffective care. They are also likely to have experienced these trained-in assumptions presenting in uncomfortable ways which undermine them as a credible person, from “if you’d just try” to plain old rudeness to being told “it’s all in your mind.” And when healthcare professionals find it hard to believe the suffering person, often their friends, family, colleagues, and acquaintances follow suit. These comments, rarely intended to be hurtful, but hurtful nonetheless, have been being captured via Twitter with the hashtag #heardwhilstdisabled.

Twitter: Heard Whilst Disabled: https://twitter.com/hashtag/heardwhilstdisabled?src=hash

I learn a lot about compassion and the real lives of persons with chronic illness from conversations on Twitter, on Facebook, and from lurking in support groups for various conditions. Usually, I joined the group when I myself was misdiagnosed with some condition, as part of my own rare disease journey (although mine turns out not to be so terribly rare, just rarely diagnosed). There are a lot of these groups, countless ones. Even just looking for chronic pain groups on Facebook, there are easily close to 100 of them! In these groups (and on Twitter, and in other social media spaces), something that comes up almost every day are stories of someone who went to the emergency room, and was unable to get the care they believed they needed and deserved because they were assumed to be a) drug seeking; b) attention seeking; c) misrepresenting their symptoms; d) liars; e) mental health patients (which is too often interpreted as not a credible reporter, or the pain “is all in your head”); f) that they don’t really have the condition they say they have; g) … well, it goes on and on.

Yesterday, in one of these support groups, someone alerted the rest of the group to a blogpost written last week by an emergency room nurse that has taken off in a rather viral way. And it is spreading. People are sharing the post to other support groups. Patients are up in arms. They are complaining to her employer. They’ve phoned her supervisor. They are filing official complaints. It’s all a nasty piece of business. Meanwhile, the nurse in question posted the link to her own Facebook page in a jocular way, with public viewing permissions, and various healthcare colleagues and friends have gone to town with it, joking, sending virtual high-fives, and sharing it. Widely. Lots of comments and around 50 shares. The blogpost itself has, as of this writing, well over 115,000 views, according to the counter on the page. Just to make it even more … awkward, the blogpost itself and the comments on the Facebook post both imply that this was written while the nurse was on duty at her job, as triage nurse in the Emergency Room.

trauma blur
Trauma Blur, by Mike Beck

OK, brace yourself. Here’s the post that has the patient communities so upset, and the nursing community so entertained.

Wainwright-Morrison, Kimberley. Confessions of an ER Nurse: This is probably your fault, not mine. Feb. 23, 2015. http://www.kimberlywainwright-morrison.com/413380011/2549810/posting/confessions-of-an-er-nurse-this-is-probably-your-fault-not-mine

Where does this go wrong? In the title, as soon as the word “fault” is used. “Fault” implies “blame.” Placing blame is a great way to attract blame. It immediately creates an us vs. them mentality. Because this is written by a nurse, the title alone will tend to push patients to feel defensive, and to likely misunderstand the intended message of the post. If the point of the post is to actually change patient understanding of the emergency room protocols, policies, and capabilities, it needs a new title. If the goal is to change patient behaviors, ditto. Some of the (presumed) nurses on Facebook suggested giving every patient a copy of this post at the triage desk. Hmmm, might want to rewrite it a bit first.

The focus of the Wainwright-Morrison post is on the non-compliant patient, a topic which is kind of a pet peeve of mine. Not to diverge too much (and I’ll try to make a separate post on ‘noncompliance’), I’ve been writing about this for a very long time. In our 2002 book, I argued in favor of the idea that “patients have reasons for being non-compliant,” that calling patients non-compliant is actually patient-blaming and unproductive, and that informed consent implies people deserve the right to make decisions which the experts might not agree with.

“Our personal belief is that it is neither realistic nor ethical to attempt to control or proscribe access to health information. Nor is it realistic or ethical to legislate or prescribe what health care consumers do with health information once they find it.” PF Anderson. “Introduction: Empowering Patients.” Anderson & Allee. Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web.

The problem with the term “non-compliant” is that as soon as that phrase enters the conversation it places blame for the patient’s problems on the patient themselves. It also absolves the healthcare system of the need to find out why the patient isn’t “complying.” Did they not understand the directions? Did they understand but disagree with the instructions? Does the patient believe that a different medicine or treatment would be more appropriate? Does the patient have the support system in place that would make that treatment even possible? Could they not afford the medicines? Could they not get to the pharmacy? Could they not arrange delivery? Did they believe that they already have another medicine they think will do as well? Did they take the medicines at the wrong day/time/place? In the blogpost, there is a stated assumption (judgment?) that if a patient “can’t afford” the medicine, that they are actually lying and choosing to instead spend money on other optional pleasures.

“It is not appropriate for you to save your last $30 for your manicure or your beer or your cigarettes. You can afford a prescription. MAKE IT WORK. Everyone else has to take care of themselves; I think you can also manage.”

Which leads to more questions — does the patient actually have the executive function capabilities that would allow them to control the impulses and “make the right choice”? Is the pain or disability or condition effecting on their memory? Did the healthcare provider explain things in a way that the patient actually understood? Did they confirm that understanding? Did the patient just nod and say, “Yes,” whether they understood or not?

Now, despite my admitted bias against a focus on the “non-compliant patient,” part of what drives me in this direction is in an effort to counterbalance the enormous numbers of folk actually working in healthcare who feel the opposite. I suspect that deep down, we are saying the same things, just in different ways, but the way you say a thing, the way an issue is framed, can completely change how it is heard, how solutions are designed, and how effective those solutions might be. And obviously, there are a LOT more people who feel differently than I do about the idea of calling patients non-compliant. Most of them have hearts as big as all outdoors, and they GENUINELY really want to help patients and help make their lives better.

Which is the case for Ms. Wainwright-Morrison. She is a good person. She loves her job. She means well. She works hard. She tries to make a difference in ways that count. She tries to help people, both at work and on her own time. She takes time outside of work to help multiple charities; she is on the coordinating team for “Giving More” a non-profit focused on helping those in need. In her bio on the Giving More site, Ms. Wainwright-Morrison describes herself as “passionate about educating her patient population in regards to making their health and compliance a priority in their lives.” I respect that. I respect what I believe she is trying to do, hoping to accomplish. I do not feel that this particular blogpost succeeds in moving those goals forward.

In the patient forums, I’ve been reading post after post that takes the blogpost apart, line by line, example by example. Patients are telling story after heartbreaking or uplifting story of times when what happened in the emergency room in their lives does not match the descriptions provided by Ms. Wainwright-Morrison. Patients with the conditions she explicitly addressed (such as high blood pressure and sickle cell anemia) were particularly offended.

On the other hand, there are many other nurses, healthcare providers, and emergency room workers are emphatic that the blogpost accurately describes some common categories of patients. Many feel strongly that Ms. Wainwright-Morrison is being honest, accurate, and should be protected from the public outcry against the blogpost.

One particularly sad bit of collateral damage from this was a nurse with chronic pain in one of the support groups. She tried to explain to the other patients in the forum that what is described in the blogpost reflects standard policy in most Emergency Rooms, that there is a HUGE disconnect between what patients expect from the ER visit and what ER teams are actually allowed to do. She also explained that nurses tend to stick together, because they understand what they go through in their job, something that may not be understood by either patients or doctors. For this, she was banned from the support group. This breaks my heart.

So, this is sad, sad, sad, all the way around. Patients are hurt. Nurses are hurt. The reputation of the hospital is being hurt. The structure and nature of the support group(s) is/are being damaged. I don’t see anyone coming out ahead with this the way it is taking shape right now. It’s a lose-lose all the way around. People are on the attack or on the defensive. The conversation is polarized, instead of becoming collaborative and solution-focused.

I do NOT want to see Ms. Wainwright-Morrison lose her job, unlike some others, because this is a problem that is rampant throughout healthcare, because she was and is being encouraged to hold these opinions by the culture of her institution. I would like to see solutions being focused at an institutional level instead of individuals. Just because these opinions could cause serious reputation problems for her and her institution does not mean that making her a scapegoat would be a productive path to follow. Actually, I suspect the reverse. As long as institutions are permitted to “address” systemic cultural attitudes and issues by making scapegoats of individuals, the underlying attitudes will never change. Behaviors might change, in public, but it won’t actually support REAL change, the kind that is needed.

We need change. We need cooperation and collaboration in changing from an assumption of “non-compliance” to discovering and addressing the barriers to healthcare solutions and treatments for each person.


MORE LINKS

Rare Disease Day: http://www.rarediseaseday.org/
– Rare Disease Day Flickr Stream: https://www.flickr.com/photos/rarediseaseday/
– Rare Disease Day US: http://rarediseaseday.us/
– Rare Disease Day Virtual Swag: http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials

NIH: Rare Disease Day: http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day

Global Genes: Rare Disease Day: http://globalgenes.org/world-rare-disease-day/
– Global Genes: RDD Virtual Swag: http://globalgenes.org/wear-that-you-care/
– Global Genes: Genes and Jeans (Awareness Ribbon): http://globalgenes.org/blue-denim-genes-ribbon/


UPDATE March 5, 2015

DELETED: The posting in the original support group site.
DELETED: The patient posts and commentary to the hospital’s Facebook page.
DELETED: The original blogpost.
DELETED: The entire domain name for the nurse’s blog.

I don’t know what happened with the nurse. Of course, I kept copies and screenshots, just in case something like this happened, but I still feel this is unfortunate. I thought this had the potential to be an opportunity for learning & conversation & change. That’s unlikely now. And that’s sad. We need the change, the conversation that leads to thinking differently, hearing each other’s side, learning to understand the other’s point of view. We don’t need bullying. We don’t need silence around these issues. What we need is understanding, mutual understanding, and the opportunities to create understanding.