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Indi Young—Practical empathy: For collaboration and creativity in your work (webinar)

Empathy for your end users can help you create and design something that truly suits their needs, and it’s the basis of usability design and plain language writing. Putting yourself in someone else’s shoes is an example of applying empathy, but UX consultant Indi Young, author of Practical Empathy, says that you first have to develop empathy, and she led a UserTesting.com webinar to show us how.

Empathy, said Young, is usually associated with emotion: it makes you think about sensitivity and warmth or about sympathy and understanding a person’s perspective, sometimes so that you can excuse their behaviours or forgive their actions. As it turns out, that definition describes empathy rather poorly. Dr. Brené Brown created a short animation to explain the differences between sympathy and empathy.

True emotional empathy, Young explained, is when another person’s emotion infects you. “It strikes like lightning,” she said, and “it’s how movies and books work”—you’re struck with the same emotions as the characters. This kind of emotional empathy can be incredibly powerful, but you can’t force it or will it to happen. In our work, we need something more reliable.

Enter cognitive empathy, which can include emotions but focuses on understanding another person’s thinking and reactions. In creative work, we often end up concentrating too much on ideas and neglect the people. By listening to people and deepening our understanding of them, we can develop and apply ideas that support their patterns. This listen » deepen » apply process is iterative.

How is empathy important in our work? Empathy has a lot of uses, said Young, and one she saw a lot was using it to persuade or manipulate, which could be well intentioned but might also problematic. She’d rather focus on using empathy to support the intents and purposes of others—to collaborate and create. “Others” is purposely vague here—it can refer to people in your organization or external to it.

To truly collaborate with someone, you have to listen to them, one on one. “When someone realizes you are really listening to them and you don’t have an ulterior motive, they really open up.” These listening sessions allow you to generate respect for another person’s perspectives and can be the basis for creativity. When a user issues a request, ask about the thinking behind it. Knowing the motivation behind a request might allow you to come up with an even better idea to support your users. You can’t establish empathy based only on a user’s opinions or preferences.

In a listening session, be neutral and let go of any judgments; you can’t properly support someone you’re judging. Purposeful listening can also let you discover what you’re missing—what you don’t know you don’t know. The intent of a listening session isn’t to solve any problems—don’t go into a session with an agenda or a set list of questions, and don’t use the session as a forum to show others how much you know. Become aware of your assumptions and don’t be afraid to ask about them.

Let the other person set boundaries of what to talk about. Don’t bring something up if they don’t bring it up. If they’re not comfortable talking, excuse them. Don’t set a time limit or watch the clock. Finally, don’t take notes. “The act of writing things down in a notebook takes up so much of your brain that you can’t listen as well,” said Young.

What you’re trying to uncover in the listening sessions is the person’s reasoning, intent, and guiding principles. What passes through their mind as they move toward their intent? Instead of asking “How do you go about X?” ask “What went through your mind as you X?”

These guidelines seem simple, said Young, but mastering listening skills takes a lot of practice. Once people start opening up and you see how your ideas can better serve their needs, you’ll see how powerful developing cognitive empathy can be.

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Indi Young’s webinar will be available on UserTesting.com in a couple of weeks.

Time to leave academic writing to communications experts?

In the Lancet’s 2014 series about preventing waste in biomedical research, Paul Glasziou et al. pointed to “poorly written text” as a major reason a staggering 50% of biomedical reports are unusable [1], effectively squandering the research behind them. According to psycholinguist Steven Pinker [2], bad academic writing persists partly because there aren’t many incentives for scholars to change their ways:

Few academic journals stipulate clarity among their criteria for acceptance, and few reviewers and editors enforce it. While no academic would confess to shoddy methodology or slapdash reading, many are blasé about their incompetence at writing.

He adds:

Enough already. Our indifference to how we share the fruits of our intellectual labors is a betrayal of our calling to enhance the spread of knowledge. In writing badly, we are wasting each other’s time, sowing confusion and error, and turning our profession into a laughingstock.

The problem of impenetrable academese is undeniable. How do we fix it?

In “Writing Intelligible English Prose for Biomedical Journals,” John Ludbrook proposes seven strategies [3]:

  • greater emphasis on good writing by students in schools and by university schools,
  • making use of university service courses and workshops on writing plain and scientific English,
  • consulting books on science writing,
  • one-on-one mentoring,
  • using “scientific” measures to reveal lexical poverty (i.e., readability metrics),
  • making use of freelance science editors, and
  • encouraging the editors of biomedical journals to pay more attention to the problem.

Many institutions have implemented at least some of these strategies. For instance, SFU’s graduate student orientation in summer 2014 introduced incoming students to the library’s writing facilitators and open writing commons. And at UBC, Eric Jandciu, strategist for teaching and learning initiatives in the Faculty of Science, has developed communication courses and resources specifically for science students, training them early in their careers “to stop thinking of communication as separate from their science.” [4]

Although improving scholars’ writing is a fine enough goal, the growth in the past fifteen years of research interdisciplinarity [5], where experts from different fields contribute their strengths to a project, has me wondering whether we would be more productive if we took the responsibility of writing entirely away from researchers. Rather than forcing academics to hone a weak skill, maybe we’d be better off bringing in communications professionals whose writing is already sharp.

This model is already a reality in several ways (though not all of them aboveboard):

  • Many journals encourage authors to have their papers professionally edited before submission [6]. From personal experience, I can confirm that this “editing” can involve heavy rewriting.
  • The pharmaceutical industry has long used ghostwriters to craft journal articles on a researcher’s behalf, turning biomedical journals into marketing vehicles [7]. We could avoid the ethical problems this arrangement poses—including plagiarism and conflict of interest—with a more transparent process that reveals a writer’s identity and affiliations.
  • Funding bodies such as CIHR have begun emphasizing the importance of integrated knowledge translation (KT) [8], to ensure knowledge users have timely access to research findings. Although much of KT focuses on disseminating research knowledge to stakeholders outside of academia, including patients, practitioners, and policy makers, reaching fellow researchers is also an important objective.

To ensure high-quality publications, Glasziou et al. suggest the following:

Many research institutions already employ grants officers to increase research input, but few employ a publication officer to improve research outputs, including attention to publication ethics and research integrity, use of reporting guidelines, and development of different publication models such as open access. Ethics committees and publication officers could also help to ensure that all research methods and results are completely and transparently reported and published.

Such a publication officer would effectively serve as an in-house editor and production manager. Another possibility is for each group or department to hire an in-house technical communicator. Technical communicators are trained in interviewing subject matter experts and using that information to draft documents for diverse audiences. In the age of big data, one could also make a convincing case for hiring a person who specializes in data visualization to create images and animations that complement the text.

That said, liberating scientists from writing should not absolve them of the responsibility of learning how to communicate. At a minimum, they would still need to understand the publication process enough to effectively convey their ideas to the writers.

Separating out the communication function within research would also raise questions about whether we should also abolish the research–teaching–service paradigm on which academic tenure is based. If we leave the writing to strong writers, perhaps only strong teachers should teach and only strong administrators should administrate.

Universities’ increasing dependence on sessional and adjunct faculty is a hint that this fragmentation is already happening [9], though in a way that reinforces institutional hierarchies and keeps these contract workers from being fairly compensated. If these institutions continue to define ever more specialized roles, whether for dedicated instructors, publication officers, or research communicators, they’ll have to reconsider how best to acknowledge these experts’ contributions so that they feel their skills are appropriately valued.

Sources

[1] Paul Glasziou et al., “Reducing Waste from Incomplete or Unusable Reports of Biomedical Research,” Lancet 383, no. 9913 (January 18, 2014): 267–76, doi:10.1016/S0140-6736(13)62228-X.

[2] Steven Pinker, “Why Academics Stink at Writing,” The Chronicle of Higher Education, September 26, 2014, http://chronicle.com/article/Why-Academics-Writing-Stinks/148989/

[3] John Ludbrook, “Writing Intelligible English Prose for Biomedical Journals,” Clinical and Experimental Pharmacology & Physiology 34, no. 5–6 (January ): 508–14, doi:10.1111/j.1440-1681.2007.04603.x.

[4] Iva Cheung, “Communication Convergence 2014,” Iva Cheung [blog], October 8, 2014, https://ivacheung.com/2014/10/communication-convergence-2014/.

[5] B.C. Choi and A.W. Pak, “Multidisciplinarity, Interdisciplinarity, and Transdisciplinarity in Health Research, Services, Education and Policy: 1. definitions, objectives, and evidence of effectiveness.” Clinical and Investigative Medicine 29 (2006): 351–64.

[6] “Author FAQs,” Wiley Open Access, http://www.wileyopenaccess.com/details/content/12f25e4f1aa/Author-FAQs.html.

[7] Katie Moisse, “Ghostbusters: Authors of a New Study Propose a Strict Ban on Medical Ghostwriting,” Scientific American, February 4, 2010, http://www.scientificamerican.com/article/ghostwriter-science-industry/.

[8] “Guide to Knowledge Translation Planning at CIHR: Integrated and End-of-Grant Approaches,” Canadian Institutes of Health Research, Modified June 12, 2012, http://www.cihr-irsc.gc.ca/e/45321.html.

[9] “Most University Undergrads Now Taught by Poorly Paid Part-Timers,” CBC.ca, September 7, 2014, http://www.cbc.ca/news/canada/most-university-undergrads-now-taught-by-poorly-paid-part-timers-1.2756024.

***

This post was adapted from a paper I wrote for one of my courses. I don’t necessarily believe that a technical communication–type workflow is the way to go, but the object of the assignment was to explore a few “what-if” situations, and I thought this topic was close enough to editing and publishing to share here.

Colin Moorhouse—Editing for the ear (EAC-BC meeting)

Colin Moorhouse has been a freelance speech writer for twenty-five years and has written for clients in government, at NGOs, and in the private sector. “I get to put words in people’s mouths,” he said, “which is a very nice thing.” He also enjoys that speech writing exposes him to a huge variety of topics (much like editing). Some are more interesting than others, but even the boring ones aren’t boring because Moorhouse needs to devote only a short burst of attention to it. “I can be interested for the three days it takes me to write the speech,” he said.

The key difference between speech writing and other kinds of writing is that it’s all about writing for the ear, not the eye. Even if you’re a skilled writer, what you write may not sound natural for someone to say out loud. “Who didn’t say this,” he asked:

Don’t think about all the services you would like to receive from this great nation; think about how you can make your own contribution to a better society.

That’s, of course, a paraphrase of the famous line in John F. Kennedy’s inaugural speech: “ask not what your country can do for you; ask what you can do for your country.” You can tell which would have a bigger impact spoken aloud.

When words are written for the ear, said Moorhouse, they cater to the imagination. We filter those words through our own experience. The kinds of written materials that most closely resemble speech are letters and diaries, and he’ll sometimes use these to help him write a person’s voice into a speech. “People say that to write great speeches, you should read great speeches. I don’t think so. You should listen to great speeches.”

Speeches are not a great way to share information, Moorhouse told us, because we forget what we hear. Instead, speeches are about engaging an audience so that they’ll associate the speaker with that event or topic. Moorhouse listed six considerations when he writes speeches.

1. Oratory

“If your speaker’s a great orator,” he said, “they can almost read the phone book, because there’s something about their voice.” But most speakers aren’t like that. “Ninety-nine percent of my speakers aren’t good. That’s not to criticize them; they’re not trained.” Moorhouse has to find ways to make the words make them better speakers.

2. Event

The nature of the event factors largely into Moorhouse’s speech writing. Does the audience want to be there, or did they have to be? Is the speaker delivering good news or bad? Will there be 30 or 300 people? Will there be a mic or no mic? PowerPoint or no PowerPoint? Will people be live-tweeting or recording the speech? How knowledgeable will the audience be, and what mood will they be in? Each of these elements can change the speech entirely.

3. Story

“Storytelling is an incredibly valuable part of speech writing,” said Moorhouse. “Stories ground all of us to our common humanity.” If you’re editing a speech and you find it boring, ask the writer if the speaker has told them any stories.

4. Humour

“Humour is not joke telling. Jokes never work.” Moorhouse added, “I can make people cry a lot more easily than laugh. We grieve at the same things, but humour is very localized.” Self-effacing humour tends to work well, especially if it’s embedded in a story.

5. Language

“This is where you and I have our strengths,” he said. He advocates using simple language and declarative sentences.

6. Interest

“I believe we should be able to walk into almost any presentation and find it interesting,” Moorhouse said. “All speeches are potentially interesting.” If you’re editing a speech, the best litmus test for whether a speech is interesting is to ask yourself, “Would I want to sit through it?”

The great thing about speech writing is that you don’t need all six of these elements to make a good speech. Maybe the speaker’s not a great orator, for example. You can use the other elements to compensate.

Make sure you home in on a speech’s intended message, he said. If you find that your speech seems to be rambling, you haven’t nailed the message. If you need to, go back to the speaker and ask them to complete the sentence, “Today I want to talk to you about ______.”

In terms of process, Moorhouse suggests asking the client for the invite letter and event agenda, so that you know when the speech will be. He doesn’t always get to meet the speakers, but if he does, he’ll tape his interview with them so that he can listen to their voice and catch the intonation and the words they use. He’ll also interview people who know the speaker or the organization’s front-line staff to glean information and stories. He doesn’t use outlines, although other writers do. The danger with presenting an outline to the client, though, is that the client might want to circulate it to a bunch of people, which would hold up the writing process. Moorhouse spends about an hour on every minute of the speech—20 hours working on a 20-minute keynote.

Moorhouse offers a full online course about speech writing on his website, which includes a 170-page manual and four live webinars. He also offers a short course, with a 50-page manual, a speech-writing checklist, a webinar and a 20-minute consult.

Craig Morrison—10 fixes for improving your product’s UX (webinar)

UserTesting.com hosted a free seminar featuring usability consultant Craig Morrison of Usability Hour. Morrison began as a web designer, focusing on visual design, but he soon discovered that aesthetics alone aren’t enough to ensure a good user experience. Freelancers often get into the habit of satisfying only their clients’ demands and, once they finish one project, they move on to the next, which means that they don’t get a chance to refine user experience. But positive user experiences translate into user recommendations and business growth, so it’s a good idea to help clients see the importance of placing user needs ahead of their own.

Morrison outlined ten of the most common UX mistakes and how to fix them:

1. Focusing on impressive design instead of usable architecture

It’s tempting to want to make a site that will wow people with its visuals, but aesthetics alone don’t provide value. Morrison offered Craigslist as an example of how a plain-looking site can be popular because it has great functionality. He recommends that you consult a UX consultant first to plan a usable content structure, then focus on visual design.

2. Not removing unvalidated features

If your site has features that nobody is using, all it’s doing is cluttering up the site and making it harder for users to find what they really want from you.

3. Listening to user ideas

This is not to say that you shouldn’t listen to your users at all; listening to their problems is valuable, but often what users suggest as solutions wouldn’t work well. Morrison suggests that you start user testing and watch how people use the product. Seeing where they falter will highlight what you need to work on.

Polling your audience is also a good way to get feedback, particularly for new features, but phrase your questions carefully. You’re looking more for users’ motivations for using a particular feature, as opposed to their opinions about which option they’d prefer.

4. Forcing people to sign up without offering any value

Your landing page can’t be just a logo and a sign-up form. People aren’t willing to exchange their information for nothing. Instead, show why your product is valuable before they sign up. This also goes for credit card numbers: asking for that information during a free trial will turn people off before they’ve even tried your product.

5. Taking user feedback personally

If your dismiss negative feedback by saying “they just don’t get it” or “users are dumb,” you’re sabotaging your business. Complaints are opportunities to improve UX.

6. Poorly designed search function

Half of web users are search oriented and won’t browse. Morrison admits that this bit of advice may sound like a bit of a cop-out, but “follow proper guidelines for designing a usable search function.” There are best practices out there, and he’s written about some of them on his blog.

7. Not optimizing for mobile

“Mobile traffic on the web is 20% and rising,” said Morrison, and you’re driving that traffic away if your site isn’t optimized. People aren’t going to voluntarily spend the time to zoom and navigate through a website meant for larger screens. Invest time and money into a simple mobile site. Morrison says that whatever solution you choose is up to you, but he’s found CSS media queries to be a simple way to ensure your content displays how you want it to, and he prefers it over responsive design.

8. Not offering users help

Despite your best efforts to designing a user-friendly site, inevitably some people will get lost or confused and then won’t come back, out of frustration. Morrison suggests buttressing good content architecture with a searchable wiki and an FAQ page. How-to videos are great, as is live support, if you can offer it.

9. No emotional connection between brand and users

People who feel emotionally connected to your brand will have a better experience. If your users aren’t familiar and comfortable with your brand, they’ll be quick to dislike you for even the smallest flaws. Focus on building your brand early, and get buy-in from all of your employees. For example, if part of what you offer is excellent customer service, ensure that all of your employees live up to that expectation.

10. Not including user onboarding

A user’s first impression is key, and if they get frustrated with using your product, they’ll quit and never come back. You’ve sunk a lot of effort into attracting a new user but you’ll lose it all by not being able to activate them into a long-term user. User onboarding is a way of teaching users how to use your product while demonstrating its value.

At the same time, Morrison recognizes that not everybody loves onboarding. Always offer users the ability to skip it if they’re confident in using your product. At the same time, make sure they can go back whenever they want to do the onboarding if they need to brush up.

According to Morrison, real business growth through UX comes from

  1. getting traffic to the landing page
  2. converting that traffic
  3. activating new users to become long-lasting users

Morrison will be offering an online course through his website to teach people how to meet those goals using great UX. He’s also written an ebook, 5-minute UX Quick Fixes, available free on his site. The webinar I attended will be posted in a couple of weeks at UserTesting.com.

***

I liked that although Morrison’s advice is obviously more geared toward websites or apps, a lot of it applies to other kinds of documents as well. I saw the following parallel mistakes for plain language documents (numbering corresponds to list above):

1. Focusing on aesthetics over functionality. Aesthetic design is important, but usability is paramount: do your choices regarding type, graphics, headings, and white space make the document easier to read and understand?

2. Including too much “nice to know” information. In most plain language documents, you should give readers what they need to know.

3. Listening to users? This point of Morrison’s gave me pause, but his advice of paying attention to the users’ problems rather than their suggested solutions makes sense. For instance, users that consistently fill in a part of a form wrong may not pinpoint poor layout as the reason, but a plain language expert might.

5. Taking user feedback personally. This problem probably applies to the client more than the plain language writer or editor, but the editor may have to go to bat for a user and convince a reluctant client that you have to make certain changes.

6. Poorly designed search function. A good search function is a must-have for websites and apps. The print analogue is an excellent table of contents, descriptive and logical headings and subheadings, and a thorough index.

Have I’ve missed other parallels? Let me know in the comments.

Informed-consent documents: Where legalese meets academic jargon

Ever since the Nuremberg Trials put on display the atrocities of human experimentation at the hands of Nazi doctors, the concept of informed consent has been a cornerstone of both medical treatment and biomedical research. [1] Although no country has adopted the Nuremberg Code in its entirety, most Western nations have acknowledged the importance of informed consent as a pillar of research and medical ethics. But if study participants or patients don’t understand the documents that describe the study protocol or treatment plan, are they truly informed?

For human research subjects, the U.S.’s Code of Federal Regulations states:

46.116 General requirements for informed consent

Except as provided elsewhere in this policy, no investigator may involve a human being as a subject in research covered by this policy unless the investigator has obtained the legally effective informed consent of the subject or the subject’s legally authorized representative. An investigator shall seek such consent only under circumstances that provide the prospective subject or the representative sufficient opportunity to consider whether or not to participate and that minimize the possibility of coercion or undue influence. The information that is given to the subject or the representative shall be in language understandable to the subject or the representative. [Emphasis added]

In “Public Health Literacy in America: An Ethical Imperative,” Julie Gazmararian and her co-authors note that one of the “Characteristics of a health-literate America” is that “Informed consent documents used in health care are written in a way that allow people to give or withhold consent based on information they need and understand.” [2]

Unfortunately, actual informed-consent materials fall far short of promoting understanding. Informed-consent documents are used both for legal reasons and to explain research or treatment protocols; as a result, they’re susceptible to being filled with legalese and medicalese—the worst of both worlds. Giuseppina Terranova and her team reviewed consent forms used in various imaging procedures and found that

At qualitative assessment by consensus of the expert panel, the informed consent forms were complex and poorly organized, were written in a jargon style, and contained incomplete content (not including information about treatment options, long-term radiation risk and doses); for outcome probabilities, relevant information was not properly highlighted and easy to find. [3]

Having a complex informed-consent form rife with legalese only stirs distrust among participants and patients. In “Improvement of Informed Consent and the Quality of Consent Documents,” Michael Jefford and Rosemary Moore write:

Informed consent has two main aims: first, to respect and promote participants’ autonomy; and second, to protect them from potential harm. Provision of information in an understandable way lends support to both these aims…

The written informed-consent document (ie, consent form) is an important part of the requirement to disclose and advise participants of the details of a proposed trial. Although the form has been said to give “legal and symbolic documentation of an agreement to participate,” the length and complexity of informed-consent documents hinder participant understanding. Viewing the consent form mainly as a legal document tends to hinder attempts to create reader-friendly documents: “many sponsor and institutions appear to view them primarily as a legal instrument to protect them against litigation.” [4]

Ironically, “The high reading levels of most such forms precludes this understanding, increasing rather than limiting legal liability.” [5] What’s more, if a consent document is hard to understand, research participants will believe researchers are merely covering their own asses rather than prioritizing the participants’ well-being.

The obvious solution to this problem is to use plain language in informed-consent documents. In a test of a standard versus modified (plain language) pediatric consent form for parents, Alan R. Tait and co-investigators found that

Understanding of the protocol, study duration, risks, and direct benefits, together with overall understanding, was greater among parents who received the modified form (P<.001). Additionally, parents reported that the modified form had greater clarity (P = .009) and improved layout compared with the standard form (P<.001). When parents were shown both forms, 81.2% preferred the modified version. [6]

Further, not only do plain language statements (PLS) protect research subjects and patients, but they also benefit researchers:

In the most practical sense, a commitment to producing good quality PLS leads to faster ethics approval—an outcome that will delight researchers. However, the real reward that comes with commitments to high quality PLS is the knowledge that parents and participants are properly informed and that researchers are contributing to a positive change in meeting the information requirements of parents and young research participants.

Plain language information statements need to be clearly understood by research subjects if the ethics process for research approval is to fulfil its objective. [7]

I see an opportunity for plain language experts to advocate for informed consent by promoting clear communication principles at research institutions and health authorities. Although most institutional research ethics boards (REBs) have guidelines for consent forms that recommend using lay language, I would guess that most REB members are unfamiliar with the plain language process. Institutional REBs, such as the one at Simon Fraser University, consist of not only faculty members and students but also members of the wider community, so even if you are unaffiliated with the institution, you may still be able to join an REB and advocate for plain language from the inside. If you’d rather not commit to sitting on an REB, you might want to see if you could give a presentation at an REB meeting about plain language and clear communication principles.

In my ideal world, a plain language review of consent documents would be mandatory for ethics approval, but biostatistician and current chair of SFU’s REB, Charlie Goldsmith, warns that adding a further administrative hurdle to ethics approval probably wouldn’t fly. Most researchers already see the ethics review process as burdensome and a hindrance to their work. But if you could convince researchers that a plain language review before submission to the REB could accelerate approval, as Green and co-investigators had found, you might help open up opportunities for plain language advocates to work with researchers directly to develop understandable consent documents from the outset.

That said, plain language informed-consent forms address only one facet of the interaction and relationship between researcher and study participant, or between clinician and patient. Jefford and Moore write:

There are reasons for putting effort into the production of plain-language participant information and consent forms. However, evidence suggests that these forms should not be relied on solely to ensure that a person understands details about a trial. Plain-language forms should be seen as part of the process that aims to achieve meaningful informed consent. [8]

In other words, clear communication initiatives should extend beyond written materials to in-person interactions: researchers and clinicians should receive training in plain language debriefing and in techniques such as “teach-back” (asking someone to repeat the information they’ve just been given in their own words) to ensure that they are fulfilling their ethical obligations and are doing all they can to help patients and study participants become truly informed.

To learn more about research ethics, including informed consent, take the Course on Research Ethics, developed by Canada’s Panel on Research Ethics.

Sources

[1] JB Green et al., “Putting the ‘Informed’ into ‘Consent’: A Matter of Plain Language,” Journal of Paediatrics and Child Health 39, no. 9 (December 2003): 700–703, doi:10.1046/j.1440-1754.2003.00273.x.

[2] Julie A Gazmararian et al., “Public Health Literacy in America: An Ethical Imperative,” American Journal of Preventive Medicine 28, no. 3 (April 2005): 317–22, doi:10.1016/j.amepre.2004.11.004.

[3] Giuseppina Terranova et al., “Low Quality and Lack of Clarity of Current Informed Consent Forms in Cardiology: How to Improve Them,” JACC. Cardiovascular Imaging 5, no. 6 (June 1, 2012): 649–55, doi:10.1016/j.jcmg.2012.03.007.

[4] Michael Jefford and Rosemary Moore, “Improvement of Informed Consent and the Quality of Consent Documents,” The Lancet. Oncology 9, no. 5 (May 2008): 485–93, doi:10.1016/S1470-2045(08)70128-1.

[5] Sue Stableford and Wendy Mettger, “Plain Language: A Strategic Response to the Health Literacy Challenge,” Journal of Public Health Policy 28, no. 1 (January 1, 2007): 71–93, doi:10.1057/palgrave.jphp.3200102.

[6] Alan R Tait et al., “Improving the Readability and Processability of a Pediatric Informed Consent Document: Effects on Parents’ Understanding,” Archives of Pediatrics & Adolescent Medicine 159, no. 4 (April 1, 2005): 347–52, doi:10.1001/archpedi.159.4.347.

[7] JB Green et al., 2003.

[8] Michael Jefford and Rosemary Moore, 2008.

***

This post is an excerpt (heavily edited to provide context) of a paper I wrote for one of my courses about the role of plain language in health literacy. Plain language experts might find some of the references useful in their advocacy work.

Access to information: The role of editors (EAC-BC meeting)

At the November EAC-BC meeting, Shana Johnstone, principal of Uncover Editorial + Design, moderated a panel discussion that offered rich and diverse perspectives on accessibility. (She deftly kept the conversation flowing with thematic questions, so although her words don’t show up much in my summary here, she was critical to the evening’s success.)

Introductions

Panel members included:

The Crane Library, Nygard explained, is named after Charles Crane, who in 1931 became the first deafblind student to attend university in Canada. Over his life he accumulated ten thousand volumes of works in Braille, and when he died, his family donated the collection to the Vancouver Public Library, which then donated it to UBC. Paul Thiele, a visually impaired doctoral student, and his wife, Judith, who was the first blind library student (and later the first blind librarian) in Canada, helped set up the space for the Crane Library, including a Braille card catalogue and Braille spine labels so that students could find materials on their own. Today the Crane Library is part of Access and Diversity at UBC and offers exam accommodations, narration services (it has an eight-booth recording studio to record readings of print materials), and materials in a variety of formats, including PDF, e-text, and Braille.

Gray, who has a background in recreational therapy, used to work with people who had brain injuries, and for her, it was “a trial-and-error process to communicate with them just to do my job,” she said. Through that work she developed communication strategies that take into account not only the language but also formats that will most likely appeal to her audience. To reach a community, Gray said, it’s important to understand its language and conventions. “It’s about getting off on the right foot with people. If you turn people off with a phrase that is outside their community, they stop reading.” It’s also important to know who in a community is doing the reading. In the Down syndrome community, she said, “people are still writing as if the caregivers are the ones reading” even though more people with developmental disability are now reading for themselves.

Booth works with forty-five groups (such as the Writers’ Exchange) that provide literacy support in the Downtown Eastside, which he emphasized is “a neighbourhood, not a pejorative.” He defined literacy as the “knowledge, skills, and confidence to participate fully in life,” and he told us that “There is more stigma around illiteracy than there is around addiction.”

Busting misconceptions

Within the Downtown Eastside, said Booth, there are “multiple populations with multiple challenges and multiple experiences—sometimes bad—with learning.” Residents may be reluctant to get involved with structured educational opportunities, and so they rely on community organizations to reach out to them. The media does the Downtown Eastside a disservice by portraying it as the “poorest postal code in Canada,” Booth says. To him, all of his clients, regardless of their background, bring skills and experience to the table.

Gray agreed, adding that it’s easy to make judgments based on appearance. She knows that her three-year-old son, who has Down syndrome, is taking in more than he’s putting back out. The same holds for people who have had strokes or people with cerebral palsy. Some people may not speak well, but they may read and understand well. She acknowledges that we all bring preconceptions to every interaction, but it’s important to set them aside and ask questions to get to know your audience.

“What do we think of, when we think of a person with a disability?” said Nygard. “Not all disabilities are visible.” People assume that text-to-speech services are just for the visually impaired, but often they are for students with learning disabilities who prefer human voice narration. The students who use the Crane Library’s services are simply university students who need a little more support to be able to do certain academic activities. They are people with access to resources and technology that will help them get a university education.

People also assume that technology has solved the accessibility problem. Although a lot of accessibility features are now built into our technology, like VoiceOver for Macs and Ease of Access on Windows, computers aren’t the answer for everyone. For some people, technology hasn’t obviated Braille.

Their work—The specifics

Gray said that although she works primarily with print materials, she’s started writing as though the text would destined for the web. “I’m no longer assuming that people are reading entire chunks of material. I’m not assuming they’re following along from beginning to end or reading the whole thing. I’m using a lot more headings to break up the material and am continually giving people context. I’m not assuming people remember the topic, so I’m constantly reintroducing it.” People with Down syndrome have poor short-term memory, she said, so she never assumes that a reader will refer to earlier text where a concept was first introduced. “Don’t dumb it down,” she said, “but use plain language. Keep it simple and to the point.” Some writers enjoy adding variety to their writing to spice things up, she said. “Take the spice out. Keep to the facts.”

That said, editors also have to keep in mind that when people read, they’re not just absorbing facts; they’re approaching the material with a host of emotions. For people who have children with Down syndrome, she said, “everything they’re reading is judging them as a parent.”

“We don’t know where people are at and where their heads are when they’re taking the materials in,” Gray said.

To connect with the audience, said Booth, listening is a vital skill to develop. “Storytelling is a really important art form. Everybody has a story, and everybody will tell you their story if you give them the opportunity.”

Nygard compares her work to directing traffic—making sure resources flow to to people who need them. She explained the process of creating alternate formats: students have to buy a new textbook and give Nygard the receipt, at which point she can request a PDF from the publisher. But is it fair, she asked, to make these students buy the book at full price when their classmates can get a used copy for a discount? Another inequity is in the license agreement; often they allow students to use the PDF for the duration for the course only, when other students can keep their books for future reference. Image-only or locked PDFs are problematic because text-to-speech software like JAWS can’t read it.

For books that exist only in print, the conversion process involves cutting out the pages and manually scanning them to PDF, then running them through an OCR program to create a rough Word document. These documents then get sent to student assistants who clean them up for text-to-speech software. Otherwise, columns, running heads, footnotes, and other design features can lead to confusing results. We get a lot of context from the way text is laid out and organized on the page, said Nygard, but that context is lost when the text is read aloud.

Editors as advocates

Gray said she’d never considered herself an advocate per se. “I do think it’s part of my role to advise clients about the level of content and the way it’s presented. We need to make sure we can reach the audience.”

When we make decisions, said Nygard, we have to look out for people in the margins that we might not be addressing.

Booth said, “We’re all very privileged in this room. We have a responsibility to be advocates. Our tool is language.” As he spoke he passed out copies of Decoda Literacy Manifesto to each member of the audience.

Resources on accessibility

Nygard suggested we check out the Accessibility for Ontarians with Disabilities Act. Ontario has been a leader in this arena. She also mentioned the National Network for Equitable Library Service (NNELS), which allows collection sharing between various libraries. Many public libraries don’t find out about the Crane Library’s services, because it’s at an academic institution, but its collection is available to the general public. The NNELS site also has a section of tutorials for creating alternate-format materials. SNOW, the Inclusive Design Centre at OCAD, also has some excellent resources.

Compared with Ontario, said Nygard, BC lags behind in its commitment to accessibility. The BC government released Accessibility 2024, a ten-year plan to make the province the most progressive within Canada. But both Nygard and Booth call it “embarrassing.” “How they’ve set their priorities is a horror show,” said Nygard. One of the benchmarks for success in this accessibility plan, for example, is to have government websites be accessible by 2016, without addressing the concerns of whether people with disabilities have the skills, literacy, or access to technology to use that information. Meanwhile, disability rates haven’t gone up since 2007.

Booth agreed. The province has cut funding for high-school equivalency programs (GED), ESL, literacy, and adult basic education, choosing instead to focus on “job creation in extractive industries and training people to do specific jobs. What’s going to happen in a decade from now for people who don’t have education?”

In response to a question from the audience, Nygard acknowledged that  Project Gutenberg and Project Gutenberg Canada are great for accessible text of works in the public domain. She also mentioned that LibriVox has public domain audiobooks.