Hi, Dan! This all started (cancer "tag ontologies"/tag collections) when Matt and I were both on the Board, and has been growing and morphing ever since. As use grows, we're trying to document evidence to show if and how it makes a difference for people. The big findings for patients are community and support. The big findings for academics is reducing spam.
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Thanks for sharing! Here's our Visual Abstract for it. I should really do a talk or something on Visual Abstracts, what they are, how to make them, resources, guidelines, best practices, and how they support social media in science communication.
May 21, 2019 · Responding to patients with printouts, what's best? in Give & Get Advice
Thank you @womenofteal and @matthewrehrl! Excellent thoughts, here, and I'm grateful that other folk are seeing layers of complexity in this that could benefit from a more nuanced approach, one that is respectful of the constraints on clinicians and respectful of the needs of patients. Looking forward to further conversation on this. Tagging @colleenyoung to pull in on this.
May 17, 2019 · Responding to patients with printouts, what's best? in Give & Get Advice
Initially, I agree, I thought this sounded actually almost okay. I wanted to add another "R" up front for "Respectful listening" but it was almost there. And then I read the article. You see, I was thinking this would be a process you would work through with the individual patient. You would respectfully listen to their concerns and why they were bringing this up in the first place. You would address their concerns by reassuring them that they were heard and that you have further thoughts on what to do. You would redirect the conversational focus from the web site or paper they brought to the actual clinical concern, and then refer them to better and accessible online information that addresses their concerns and touches on what the clinical concern/treatment plan area.
No. That's not what the article says. There is nothing about the quality of the information, helping people understand the information. The "redirect" section is about referring to better information, thank goodness. But this is a multiple choice exam to triage the patient into the proper bin. Patient presents with website or article they found. The clinician then has to decide whether to reassure the patient there is no concern, redirect the patient to better info, or give them a clinical referral to another doctor.
I don't know. This seems rather inadequate to me. And reading this has me second guessing doctors who I have trusted. Are they actually partnering with me, or is there a note somewhere that says "this strategy will get her to go away for a while"?
May 16, 2019 · Responding to patients with printouts, what's best? in Give & Get Advice
This article https://doi.org/10.1016/j.clindermatol.2018.08.002 was posted to an internal forum for clinicians as an example of ways to manage patients who come into clinic with questions from Google search results or answers from social media or other online sources. The article recommendations seemed problematic to me, but I wasn't certain. I posted the link to it a few places, and got replies from other HCSM folk that it bugged them, too. There is talk about writing a letter to the editor, or a new article in response to this article. I wanted to run the article past this group, to see what folk thought about it. I suspect this is a pretty nuanced issue, and that any recommendations could be problematic. It's tricky once the social media crosses over into clinic spaces. Thoughts?
Hi, Rachel! I agree 1000% with Chris's observation that there are no silver bullets. The challenge is that whatever content you create in whatever form will probably be inaccessible to someone. My main 'tricks' are to
(1) Identify your top priority content, and provide that content in a variety of forms and media, written for a variety of audiences at different reading levels, in video and images and text and audio;
(2) Identify your main audiences and develop web design personas that fit them (and make sure you include examples with the main ;
(3) Use universal design types of principles wherever possible such as writing text with summaries at the top, ensure documents are well structured and use appropriate headings, make sure that all media and forms and interactive bits have alt-text / long descriptions / transcriptions, use white space, provide plain language summaries;
(4) code in CSS so that expert users can override your formatting entirely to apply their own personal settings (and if you structured the document well, it won't break when they do this).
For tools and checklists, well, the W3C are the top go-to source for this (https://www.w3.org/TR/WAI-WEBCONTENT/full-checklist.html), but you may also want some simpler sources like the A11y Project (https://a11yproject.com/checklist). I typically refer people to the guidelines we have here, which were iteratively developed in response to common questions in our community, but lots of organizations have similar sites and recommendations. Here is ours: http://webaccess.hr.umich.edu/ . It has links to a lot of the checklists, software checkers, and resources that we've found helpful.
Not about accessibility, but stumbled into this interesting piece on why to use animated GIFs, with a fairly tight organization to the concepts. https://www.slideshare.net/DigitalGov/animated-gifs-and-the-office-of-the-director-of-national-intelligence-michael-thomas-odni?next_slideshow=1