If you are into any kind of accessibility and have some free time on Tuesdays (2 PM US Central time, or 8 PM GMT or check for your timezone), I would recommend #AXSChat in twitter. (link to axschat). It’s a popular chat, with different people and themes each week, and it’s super inclusive. Just keep it clean and positive.
Each week there is a new video interview with the guest of the week uploaded to AXSChat youtube channel, and here is this week’s one about healthcare and telemedicine accessibility. A few years ago a startup for telemedicine was created, using the technologies that the deaf and hard of hearing had used until then (that is, video chat) to make the healthcare consults more accessible to others as well. If you can’t travel easily to the health services provider, if you are a foreign language speaker (their words for this context – as a nondriving person whose first or second languages aren’t English, I don’t care for video, I prefer text and audio. More on that later). Each week new questions to the week’s chat are posted on AXSChat website, here. The chat is quite fast paced as it has many participants, so I would recommend to have the questions open in a separate window or tab or app, whichever way you use twitter.
Here are this week’s questions (8 August 2017), pasted:
Q1 How can telemedicine providers like @CloudbreakHLTH help make access to healthcare more inclusive for people with disabilities? #AXSChat
Q2 @JameyEdwards described the #pinksocks movement as a community built on the spirit of gifting. What does community mean to you? #AXSChat
Q3 Has technology in healthcare got in the way of Healthcare Professionals making meaningful connections with their patients. #AXSChat
Q4 How can we reintroduce empathy that runs both ways between Drs & patients into a healthcare system that’s been digitised? #AXSChat #HCLDR
Q5 @CloudbreakHLTH uses “client advocates” as #changeagents – How do you deal with entrenched resistance to new ideas? #AXSChat
Q6 Can we achieve “precision care” as well as precision medicine that recognises each person’s needs as unique? #AXSChat
The format for answering in twitter is to reply with an “A number” for “Q number” and add the same hashtags (#AXSChat in this case) to the end of the tweet. That way question 1, Q1 will have an answer that starts with A1 and has the tag in the end. Since this week’s chat is something I could go on for a long time, for once, here are some of my preformulated answers, expanded quite a bit, below.
A1 telemedicine can be made much more accessible than physical dr’s offices in many ways #AXSChat / (note that tweets can be max 140 characters long. You can reply to your reply to keep them looped and the thought to continue; here I try to indicate how long roughly a tweet can be for the short answer, but will continue to expand the replies in a more blog format, which I’ll also use in twitter later) in this one I need to go to much more detail:
- no need to figure out how to arrange transport to reach the provider or facility. This is huge for the point of anyone who doesn’t drive, or who does not have access to transport or a specific healthcare facility or provider in their area. As the best example, if I wanted to find a blind specific councelor, it would probably be much easier to find one online than in my city; see the obvious reasons for not driving.
- the app and the format should be made fully accessible for everyone. That includes booking an appointment, paying, answering pre-consult questions, being able to save the transcript etc. These are all issues that are barriers for many in the more analog access to healthcare.
- Using a telephone to make voice calls can be a barrier to quite a few people, and not only deaf or limited language users. So eliminate that need
- Filling in a 30 page questionnaire about health history prior to visit can be an issue when the only format is available is paper, and not only for the fully blind, severely dyslexic, or illiterate customers. Yes, make it so that a deafblind customer can fill in the form themself.
- Having an ability to save the transcript is simply not possible in analog environments, as most doctors would apparently have issues allowing their paying customers to record the audio of the consult for reference. So if the app allows you to fill in all those secondary functions or a requirements of a healthcare consult, it’s a win for the customer.
- Having more control over environmental and sensory factors, but only when the consultation is done in your own environment. When you aren’t forced into a telemedicine consult in an ER room followed by being forcefully kept awake for too many days of nights, it can make a huge difference. You know the platform you are using (your pc or mac, your phone, your tablet), the assistive tech you might need (visual, audio, motor, sensory, any combo), where your cameras, speakers, headphones etc are, and how to minimize the environmental distractors. The more control over things also covers things from sensory perspective: no unwanted touching, no forcing you to step on scales, no poking or other touch things patients are usually forced to at medical environments. As an autistic person, those sum up fastAs a result of being able to use your own tools and AT, it should also mean that you would be less likely to be interrupted by the medical professional than when compared to meeting them in analog consultations. Doctors are not good listeners, and they interrupt their customers a lot. Especially if the customers are female, have any disabilities, are from a different culture, don’t take everything the doctor says as a gospel etc.
- And your communication preferences should be able to be respected much better. Maybe if you are a visually impaired customer, you don’t care about the ability to have video at all, so maybe stick it to just regular audio and typed text. Or as an autistic and/or a deafblind customer, maybe you want only written text, no audio, no video
- .Oh, and don’t forget: it should allow the customer to be able to have access to their own healthcare records too. The healthcare systems, and especially many doctors in USA aren’t excited about this, and there are a lot of BS reasons why it’s not working (e.g. as the different EHR systems are provided by a few competitors so there is no desire to make them compatible). All of the reasons are BS; patients have access to all this e.g. in Denmark. If you want to expand your views on this, I would highly recommend you
An American Sickness: How Healthcare Became Big Business and How You Can Take It Back by Elisabeth Rosenthal. It was published this year, and is available in print, ebook, audiobook etc so check your local library
Those should be enough of the accessibility angle for Q1.
A2 community means I feel like I belong to a group; don’t assume any group affiliations #AXSChat / expanded: do not assume I feel connected to a person or group based on any specific criteria. Just because someone has a body of the same sex does not create any magic social bonds, not does having grown up in a specific language or culture group. Each individual will figure what “communities” they belong to. Whether that is a local neighborhood of where they live, a religious affiliation of something they are interested in, associations of disability inclusion groups etc etc. For me those “feelings” of community and belonging are easier to be achieved online than in person. That probably needs a bit more expanding too: when you meet people in person, you can see them, right..? So what when you can’t exactly see them when you see them? When you can’t hear all the nuances of how they speak, such as their subtle emotional undertones? Get it? When those are all a blur, with a lot lost in not seeing and hearing them, guess what: online communities can be more relatable. Just like in person, I don’t see where your eyes are pointing or what you’re wearing, and I wouldn’t attack a random new visitor to said community with “whereyoufrom”, “nobutwhereyoureallyfrom” type of questioning. (PSA: just because someone looks or sounds different from what you expect them to, it is not ok to pester them with wheryoufrom until you know the person better and have at least introduced yourself first. And even then, how about offer the where you are really from first. Doesn’t matter if you perceive the other person to have any dis- or different abilities or not, it’s just common good manners)
A3 I don’t know; I have only had meaningful meetings with my eye and allergy drs #AXSChat / Expanded: technology is not anything more or less than it’s in the life in general. You hang out with your friends whether you socialize with your friends in digital or analog world. Shouldn’t be much different for visiting healthcare providers. The dr’s inability to listen without interrupting their customer is not something that differs whether they use technology or are in their own comfortable ivory tower consult room. If you are rude, interrupt your customer, have a doctor-god attitude, it’ll be the same even when you use technology. Doctors could definitely benefit from some disability specific training too. I’ve been “cared” by doctors who I’ve never met – because no one with their name has ever introduced themselves to me. Don’t count on my ability to read your nametags at polite distances, even if I don’t use my fancy Ambutetch selfiestick. “Hi, I’m dr Soandso, a (specialty) in (location, affliation etc). Pleased to meet you” is apparently too difficult for many medical people. Perhaps it’s not covered in the basic medical training…
A4 I worked in IT: I mirror the perceived empathy levels of the other person #AXSChat / Translated: when I use technology in my terms, and deal with a customer etc that is nice, I’m nice. If I’m dealing with a rude asshole that constantly interrupts me on the phone, or screams loudly, or has a rude, demanding attitude, I will not be nice. I won’t do any favors. So if the dr I’m consulting with does not seem nice or doesn’t seem to be listening, my natural tendency would be to cut off all video, switch to typed communication. You obviously will not deserve to hear my voice since you’re rude, since you interrupt etc. Don’t take me for granted, and don’t step the boundaries. Oh, right: and I also don’t care to look at your face. See the earlier notes about not being primarily an eyeball user, and literal autistic mind
A5 my healthcare; I dictate the terms, sorry #AXSChat / Expanded: I have C-PTSD, one or some of the causes being medical. I don’t “speak” healthcare industry terminology, in fact I even have huge issues when the industry wants to use the word discharge about people. Pus, blood, snot, and period or other vaginal goo are examples of discharge; people are not discharge. And that is just one tiny example. Yes, I will have questions to your “patient advocates” or whatever you want to call them. Give me a detailed price list of all the services you provide or would like to, in a format I can read myself, thank you. Oh, where did all those people with a fake friendly white woman voice suddenly go? Back to the resistance… how do I deal with it? If I have to deal with a doctor who is incompetent, including not only a terrible listener or with terrible bedside manners but also a digitally incompetent relict from the last century, I will switch provicers. Bye bye Dr H, it’s soooo inspirational to have a doctor with a memory impairment such as yourself even be allowed to work as a MD in this country. As a side effect of using hearing as my first sense and having a neurodivergent brain, I have a good audio memory. I remember the exact words you people used, even if I don’t often grep the meaning you tried to imply. I know when you lie, when your words are contrary to what you just said 20 minutes ago or last year
A6 hire more disabled and autistic people in designing the healthcare solutions #AXSChat / expanded: this should be obvious. Disabled and neurodivergent people know what doesn’t work now in the healthcare, digital world, or when the two meet. And healtcare and telemedicine definitely should be accessible to all. See all the examples I dragged in A1. Also, make it super easy to use. No unlabeled buttons, no guessing from colors you can’t see, no complicated language... apply all the usual accessibility and usability rules. Keep it simple, so your grandma with cataracts and a hearing aid can figure how to use it. Or a Spanish or Chinese speaker who speaks little English (or whatever local language to the environment). Allow those with seemingly good language skills to indicate what languages they would prefer to use. Guess when was the last time I could access healthcare services using a language I would have preferred in the USA? Yes, that is correct: never. Not once. I seem to speak good enough, so I don’t have access to any assistance, unlike Deaf or HoH for ADA. As you probably have heard a few times already, I use assistive technology… guess how often I’ve been allowed to use the tools I use in daily life to read or speak, in medical environments? About as often as I’ve been offered assistance in my first or second language. In other words, no pleasant experiences. While the doctors are busy judging and interrupting people, and all other customer-facing staff in the fields of medical industry are busy in having a fake pleasant voice and using obsessive, American eye contact dance to get a bunch of smiley faces in their review cards, it leaves me and many other customers quite unhappy.
In fact, let me list here all the pleasant medical professionals I’ve ever dealt with in the USA that were pleasant. It’s a short list… an eye doctor (understood my issues that go beyond measuring optical prescriptions), an allergy doctor (good listener, did not interrupt, understood that I have a lifetime of experience about my allergies), and a therapist (comfortable around people with various disabilities and various neurofabulous wirings).
How to make the healthcare visits more comfortable then? Good question. Make them work in different formats. I would prefer for all except eye and skin or lung issues to have a remote option, see all this telemedicine stuff. I want to have control over if I allow any video (and which direction), if audio (same), or text (preferred). I want to access it using my own devices, from my comfortable environment. I want to have an option to ditch a provider just because they are incompatible and in different wavelength, instead of being forced to interact with them. I want to save the transcript so I have a record of exactly everything that was said in verbatim. And I want access to my medical record in a format I can read, and to audit who has accessed my health info.
What I don’t want is having to use a telephone to call or receive calls, to fill in 30 page paper pre-visit questionnaires, to go into any medical facilities in person, to be touched without my consent (happens a lot in medical places), to deal with rude people.