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/

Tactile Graphics, An Introduction

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

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

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

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

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

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

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

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

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

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

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

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

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

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


MORE INFORMATION

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

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

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

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

UPDATE: MORE RESOURCES FROM THE DIAGRAM CENTER

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

Liveblog: #Sexpertise15 at U of M, Keynote

Well. I was going to livetweet the opening lecture for the 7th annual Sexpertise at the University of Michigan (#sexpertise15), but Twitter decided I am a bad bot and not allowed to tweet about it. :( So instead, I took notes, and will ‘liveblog’, but that’s a lot more work and I’m annoyed with Twitter. Here goes!


6:30 – 7:30 PM: Keynote Event: Undoing a Culture of Violence
Consider the ways we talk and learn about sex – do our words show respect for people? Do media messages condone or judge certain sexual behaviors? How could our communication be shaping what we think is normal – including violence? In this keynote address, Chinyere Neale, Director of Global Health Student Programs at the U-M School of Public Health and AASECT Trained Sexuality Educator, will lead participants in an exploration of the cultural norms that shape our thinking about sex and sexual violence, and will help us imagine a world without sexual assault.”

Up on screen at #sexpertise15 is:

Robin Thicke – Blurred Lines ft. T.I., Pharrell https://www.youtube.com/watch?v=yyDUC1LUXSU
Clean https://www.youtube.com/watch?v=qODrhss9ALc

Chinyere Neale: Academic Network for Sex Education and Research: https://sites.google.com/site/ansermichigan/affiliates/chinyere-neale

“When they asked me to do this, all the news was about rape on college campuses, so I thought maybe something about consent.”
There has been an explosion of violence against women.
I don’t have the answers. What would it take to end the culture of sexual violence against whoever the victims might be.

“Up to 20% of women say their first sexual experience was not wanted.” Common: coercion, arm-twisting, persuasion, name-calling …

Most official reactions [to stemming sexual violence] focus on prosecution. Instead, could we just focus on less violence?

People say let’s have more access to abortion. I want to say let’s need less abortion. Let’s not have women find themselves in that situation.

Problems in the media with MESSAGES that suggest sex is something people can take FROM each other. Look at the Robin Thicke song, “Blurred lines.” The message is “crappy / creepy.” The point isn’t that we shouldn’t listen, but that we should have a conversation about it.

There is nothing new about this. Bing Crosby & Doris Day “Baby, it’s cold outside” was a date rape song. Just listen to it! She says, “What’s in this drink?” Then later, “No, no, no.”

Baby Its Cold Outside – Bing Crosby & Doris Day https://www.youtube.com/watch?v=009kRJKf9rg

Remember Family Matters? Urkel liked this girl. Kept approaching this girl. What did that make him? A stalker, eh? Message: It’s ok to keep pursuing someone who isn’t interested.

Most of the assault we talk about on campus is people who know each other, maybe even like each other, but haven’t AGREED to have sex. Famous people, or non-famous people who drug peoples drinks; people who offer to walk you home, and then insist on a sexual price.

What should we do? (She asks the audience for their ideas.)

AUDIENCE

AUD: Start really young.
AUD: Teach kids. Start with good touch/bad touch, but maybe that’s not good enough. Maybe no touch unless consent
CN: Start with boys. Teach them affection young. GI Joe was designed as a “Barbie” doll equivalent for boys.
AUD: Don’t limit sex ed to physiology, include relationship skills
CN: People think if someone says “no” they don’t really mean it. Not every perpetrator is a bad person. Comparing sex ed in US to Netherlands. Teens start out in the family house, parents know. In Holland, everyone had a condom in their pocket. In the US, “People said, ‘not me!'”

Let’s Talk About Sex https://www.youtube.com/watch?v=UBqKOiBEbSY

CN: Don’t ask me to talk to your family about sex. Talk to your OWN niece!
AUD: Normalize conversations about violence as well as sex.
AUD: Make sexual violence as unthinkable as murder.
CN: Back to the guy who jumps out of the bushes. The rare rapist. They are married. They have kids. They have sex with their wife. When we hear an accusation, we default to “they wouldn’t do that,” because “they’re a nice guy.”
CN: I like this novel: Before and After, by Rosellen Brown > http://www.amazon.com/Before-After-Novel-Rosellen-Brown/dp/0312424418. In it, the son is accused of rape. Almost everyone thinks he’s too nice to have done it. But the mother, the MOTHER, she wonders.
CN: You like to think that you raised your son right, that he wouldn’t be a rapist. I like to think that I raised my son right. I do have some evidence. I walked by my son’s room once, heard him say, “Why are you having sex with that girl? You don’t even LIKE her?” I went “YES!”
CN: You have to listen. You have to listen, when someone says, “Someone did this to me.”
AUD: Media literacy can play important role. Corporate America trying to sell stuff, they use messages that endorse sexual violence.
CN: It’s much more powerful to share things with your children than to just ban it. They then have no way to analyse it, to give a context of critical thinking. For my son, I cut out designer labels. That wasn’t a message we wanted to support. Now, it’s not possible now to avoid designer labels, but you can still have a conversation around it. With your children. With your friends. Give people a chance to think more deeply about our environment.
AUD: There’s an element there of corporate responsibility. They should be held accountable, held to a higher standard.
CN: They think their responsibility is to their stockholders, not humanity, not audiences. You have to vote with your money. Don’t let artists with positive messages starve. It’s harder now, since big corporations own everything.
CN: One more thing: we need to let the definition of masculinity be broadened. Women have a much broaden space in which to express themselves.

At this point, Chinyere closed the audience discussion and returned to her presentation.

Force Majeure Trailer (2014) – Cannes Film Festival HD https://www.youtube.com/watch?v=3nTJIc_e6Ns
Force Majeure is an interesting movie set in Sweden. In it, there is family facing an avalanche. The women grabs the children. The man grabs the cellphone and books, and takes off. Then he tells the story as if he rescued his family. Over and over.
The rest of the film is about how his dishonesty is more of a betrayal of his wife than his actions.

Brene Brown began researching vulnerability in woman. Then a man told her she was missing something important, that men are vulnerable, too.

The Power of Vulnerability https://www.youtube.com/watch?v=iCvmsMzlF7o
Listening to Shame https://www.youtube.com/watch?v=psN1DORYYV0

We have very narrow definitions of masculinity. We need to give men a broader range in which to express themselves socially and emotionally. There are guys in groups of gang rapes who wouldn’t do that, but peer pressure pushes them into it.

It starts from childhood. But you can start with your brothers and friends.

I don’t think the answer to solving sexual violence is one thing. It’s complex.
Women asserting agency will help.
Better communication will help.
All those ideas you had, what you suggested. That will help.
It takes all of that.

I hope all of you will join in that struggle.

We need to provide some degree of equality to women. Not complete equality, we’re not there yet, but SOME degree.
Women are not quite as vulnerable in our society as they are in some others. It’s still a big job.

Here’s my idea of the gold standard for how that conversation ought to go:

Marvin Gaye – I Want You https://www.youtube.com/watch?v=6RRCZ0QjM2k
v=6RRCZ0QjM2k

I want you the right way
I want you
But I want you to want me too
Want you to want me, baby
Just like I want you


UPDATE:
There are two more nights of events, so check them out. Also, I just found the Michigan Daily article of last night’s talk.

Sexpertise keynote talks healthy sexual choice http://www.michigandaily.com/news/sexpertise

Informed Consent in a New Era

Informed Consent copy

I’m a big fan of John Wilbanks’ work in the area of open personal health data and informed consent, and have blogged about that here before. Briefly, my awareness of John’s work began with “We Consent” which has now transformed into Sage’s “Participant Centered Consent Toolkit.”

Cool Toys Pic of the day - We Consent
Sage: Participant-Centered Consent Toolkit (E-Consent)

Recently someone asked me a question about “online informed consent.” I think they were remembering my having mentioned John Wilkin’s stuff, a.k.a “portable legal consent” or “portable informed consent.” These and “online informed consent” are … related concepts, but perhaps not as closely related as some might think. Just to complicate matters, people are also using jargon like “dynamic consent” and “broad consent” to mean things related to both of these, but which are not quite the same. There are also people trying to get the phrase “informed consent” converted to “educated consent” as possibly being more meaningful. In this post, I will try to sort some of this out, but I’m no kind of expert in consent, and this is complicated, really REALLY complicated.

First, the short-short explanation. Portable informed consent (PIC) usually is part of online informed consent, but online informed consent (OIC) is rarely portable. Riiiight. OK, a step backwards.

PORTABLE CONSENT

The idea of portable informed consent is (in my mind, at least) analogous to Creative Commons licensing for your own creative works, except that it applies to your own health data. Actually, the idea of this really came from people wanting to share genomic data. You walk through an online informed consent process, agree to which version of a license you are comfortable with, and then when you share your data in a secure repository, that license or consent agreement is attached. People who want to use your data, must agree to follow those predetermined restrictions. Researchers who don’t agree, aren’t allowed to see your data, only data from other folk who agree to whatever guidelines they need for their project. Researchers who don’t follow the rules will be denied access to all of the data.

Personal Genomics

Genomics is basically mapping the genome. Personal genomics is doing this for a person in particular, rather than a species or condition or other collective group. Some people get involved in exploring personal genomics because of simple curiosity, but many are driven by long standing medical challenges without any easily identifiable solution. Some people are terrified at the idea of what they might find out. Others are concerned that the data will result in problems with jobs or insurance. Those urgently seeking help for health problems often want to share and find others who might have insights into their problem. OpenSNP and the Personal Genome Project are two examples of places where people share their genomic data. By making their data public and consenting to its use by researchers, they are hoping to support solutions not only for themselves but for others like them. Making sure that consent is LEGAL is essential for supporting future research. One great example of this is Jay Lake, who contributed his whole DNA sequencing data and that of his tumor, making possible research on new treatments that came too late for him. It’s a powerful story.

ONLINE INFORMED CONSENT

Online informed consent is a great deal simpler, in that it mostly takes the usual informed consent process (reading forms, signing forms, filing forms) and puts it all into an online web-based interface in a secure system. But, PIC gets more buzz in the popular press and media, while OIC gets more attention from within the hallways of day-to-day research communities. PIC grew out of work with personal genomics and is designed to make data sharing simpler, research more open, and problem solving more dynamic, all while still being responsive to issues of privacy and ethics. OIC is a tool designed to make the IRB management simpler for researchers.

DYNAMIC CONSENT

Dynamic consent is closer to portable consent, but grew more out of tissue and biobanking contexts, rather than data or genomics. Dynamic consent has a lot of nitpicky little options, and allows you to change your mind over time. That’s why it’s dynamic — things keep changing. Right now, dynamic consent is used primarily for what happens to parts of your body that are removed from your body while you are alive, and used for various medical purposes. Sometimes those purposes involved throwing what wasn’t used in the nearest incinerator, but sometimes there is something interesting and the doctors or researchers want to keep a sample for future use.

Biobanking

Now, remember, I’m drastically oversimplifying here. There are many more situations and options that come into play. Healthcare researchers have come to realize that we often don’t know where the next interesting possibility will come from, which is part of why biobanking is becoming more important. A biobank is sort of a library of tissues (meaning parts of human or animals or plants). Biobanks are often focused on a certain type of tissue or condition. Many biobanks collect tissues for a particular kind of cancer, or conditions like Parkinson’s, Alzheimer, autism, etc. Others may focus on a particular organ, like brains, breast tissue, lungs, or genome. In book and journal libraries, the librarians have traditionally spent a lot of time trying to select just the most important material on their special topics, but over generations, we’ve found the most desired content is as often as not the parts that were considered cheap and unimportant at the time, which are now expensive and hard to find, because no one kept them. Some of the same issues are coming up with biobanking, but complicated by the challenge of each and every sample being unique (although there might be copies of cell lines). At least with books, if one library lost theirs, another library might have a copy. Part of the idea of all these different kinds of consent is to try to maximise the number and diversity of samples that can be preserved and made accessible to future researchers.

PRESUMED CONSENT

Presumed consent also related to tissues, actually organ donation, but after you are no longer alive or aware enough to give or change your consent. Where I live, you have to register as an organ donor. If you don’t, and are in a fatal accident, no one is allowed to use your organs as transplants to save the lives of other folk who need new organs to survive. That isn’t how it works in all countries, though. In some countries they have “presumed consent,” where the assumption is that organ donation is fine with you as long as you don’t say NO beforehand. So, opt-in vs. opt-out. That’s the main difference. Sounds simple, doesn’t it? But people have incredibly strong feelings about both of these options.

BROAD CONSENT

Broad consent is probably the messiest of all of these. Just look at these article titles!

Can Broad Consent be Informed Consent?

Broad consent is informed consent

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

Broad Consent Versus Dynamic Consent: Pros And Cons For Biobankers To Consider

Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas

Should donors be allowed to give broad consent to future biobank research?

You can just feel the tensions rising as you read through the list. It is obvious that this is not an area of consensus. And what can it possibly mean to consent mean when there isn’t an agreement about what consent is?

“Broad consents are not open nor are blanket consents. To give a broad consent means consenting to a framework for future research of certain types.” Steinsbekk KS, Myskja BK, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics (2013) 21:897–902.

Broad consent attempts to make a best guess of what might be needed by the researcher of the future, and to try to get the individual to agree to a flexible use and reuse of tissues, samples, or data. As you can tell from the titles above, “broad consent” tends to refer to tissues rather than data, but when you get down to brass tacks, all of these could theoretically apply to a wide variety of donated content.

CLOSING THOUGHTS

The idea behind all of these myriad forms of consent is knotted into the dynamic between the rights of the individual and the needs of the community. Without research, we stagnate and die, literally, since solutions cannot be discovered for the aches and pains and problems that lead to increased mortality and reduced longevity. As a community, as a species, we don’t make progress without sharing. At the same time, the goal is to reduce harm to individuals, and forcing people to ‘consent’ against their will causes harm. I’ve known people who practically had a nervous breakdown at the idea of becoming an organ donor, the idea of part of them living on in someone else distressed them that deeply. I know others who fear what could happen to them if their genetic data fell into the “wrong hands.” I’m not one of them. I’m a registered organ donor, and I donated my genomic data to OpenSNP. But I still respect the emotional pain that would be caused by forcing consent. It’s an ethical dilemma which our society is obviously still working to solve. While looking at background material for this post I stumbled across two phrases that seemed to express some of the challenges well: “From Informed Consent to No Consent?” “Open Consent for Closed Minds.”

“I’m proposing … that we reach into our bodies and we grab the genotype, and we reach into the medical system and we grab our records, and we use it to build something together.” “I hate [the] word ‘patient.’ I don’t like being patient when … health care is broken.” John Wilbanks

Personalized Medicine, Biosensors, Mobile Medical Apps, and More

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

About FDA’s Guidance for Mobile Medical Apps

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

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

Biosensing Wearable Tech

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

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

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

Personalized Medicine

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

SLIDES

VIDEO

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

Quantified Self Meetup, Ann Arbor

Cool Toys, Devices, Quantified Self

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

INTERESTS

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

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

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

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

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

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

ISSUES

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

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

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

DEVICES, SERVICES, APPS, & MORE

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

DEVICES

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

SERVICES

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

APPS / SOFTWARE

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

RESOURCES

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

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

Big Beautiful Questions (A HOTW post from #hcldr)

Guy with questions 8

The other blog for which I was writing the “Hashtag of the Week (HOTW)” posts has changed focus, so I am no longer doing them weekly, but I am still doing them when available time and something amazing both intersect. The something amazing part happens ALL THE TIME, and if that was the only factor, I could do these daily! But this time, the conversation was so relevant and useful that I would feel like I wasn’t doing my job if I didn’t share it.

Yesterday evening, the Healthcare Leadership group had a conversation about the role of questions and questioning in healthcare. The conversation was lead by Bernadette Keefe, MD, and was triggered by Warren Berger’s work in the area of “beautiful questions.” He wrote a book, but you can find a short intro to the core ideas in his New Year’s article, “Forget Resolutions.” To help people ask better questions, more answerable questions, questions that have a higher potential for leading to positive change in their life, Bernadette pointed out the tips from the “Right Question Institute“, and I pointed out the “Question Prompts List” strategy.

Right Question Institute Question Prompt Lists

The real value of the #hcldr conversation, however, came from the questions. The questions posed for the group, and the questions posted as answers. My favorite of the questions posed was, “What are we not asking?” Keep that in mind as you read the following selections from the questions given as answers to the prompts.


T1 In our sizable efforts to make healthcare more efficient, accurate and safe,as well as less costly, what are the questions weʼre not asking?


T2 As you experience healthcare delivery today – is questioning valued?


T3 What are questions you, personally, would like to ask of your healthcare provider, medical insurance company, or hospital?


T4 How could the value of questioning be incorporated into healthcare delivery in an efficient and effective way? Programs etc?


Closing Thoughts