Plain Language Summaries for Publications from the IL UCEDD/LEND

Kate Caldwell and Carli Friedman, University of Illinois at Chicago

September 10, 2015

 Kate Caldwell
Former LEND and UCEDD Trainee
Postdoctoral Research Fellow, CEED Project
University of Illinois at Chicago 

 Carli Friedman
UCEDD Trainee and former LEND Trainee
Doctoral Candidate, Disability Studies
University of Illinois at Chicago

As researchers working in the field of disability, we want the work that we produce to have an impact. To do this we must reach other researchers, practitioners, policymakers, people with disabilities and their families to share our findings. However, a lot of content published in academic journals is written a high literacy level, containing "jargon" that renders it inaccessible. For many disciplines, this jargon may be inescapable in order for the work to be properly contextualized within the existing body of literature. For example, the work The CEED Project publishes on disability and entrepreneurship must speak to both disability employment research as well as business research. In order to make our findings articulable to these two audiences, we use language that is recognizable and relevant to policies and programs in those areas. However, we also want entrepreneurs with disabilities and their support persons to be able to understand and use our work. Ideally people should be able to pick up our work and understand what our research found, and also be able to use it in advocating for themselves with providers and policymakers. From a social model perspective of disability, this means recognizing that our use of language is inadvertently creating a barrier in effectively translating research to practice. It bears mentioning here that support persons (e.g. family, friends, job coaches, or personal support workers) may have lower literacy levels or may use English as a second language.

To address these concerns as a disability access issue, we have started the practice of creating a plain language summary for every article that we publish. We discuss the origin of the idea for plain language summaries in a post on the AUCD Early Career Professionals blog. The plain language summaries are provided open-access on our website, along with an audio version, and hyperlink to where the full text of the article can be found from the journal publisher.  You can see several examples on the CEED Project website.

This effort in knowledge translation also has the benefit of addressing copyright issues that arise when providing resources in an open-access format. Many people with disabilities, their families, and also practitioners encounter barriers of institutional access when trying to find full-text articles from academic publications available through university library networks. However, researchers who want to provider their full-text publications online face possible copyright violation as many journal publishers restrict how such articles may be shared.1 For some, authors can share a copy of the article that includes a special watermark. For others, they provide authors with a web link where up to fifty individuals can download the article for free. Otherwise, publishers require that institutions/universities or individuals pay to access their content. This has ignited a debate, particularly among disability studies scholars, over the importance of providing open-access as a disability issue. Currently, however, there is concern that a majority of open-access journals do not yet have the same reputation as established peer-reviewed journals that are ranked and/or have an impact factor. Providing a plain language summary of published articles addresses these issues because it can be provided freely online and in a way that does not infringe upon the publisher's copyright. In fact, it can actually draw more traffic to their journal.

How to Make a Plain Language Summary

The goal of this knowledge translation strategy is to distill information into plain language summaries. To this end, it is important to first abstract the core ideas from the publication. As with any summary, it is helpful to re-read the publication and note key concepts with which to make an outline of the publication. This outline should be targeted towards the audience you are writing the plain language summary for, and accordingly may differ from the original outline used to write the article. The core ideas, key concepts, and outline can then be used to create the plain language summaries:

graph outlining steps: find core areas, note key concepts, make an outline

In writing the summary content, it is important to continuously question, "Can this be explained any further" and, "Is it explained in the most basic form possible?" Sometimes this requires breaking a concept down into a more in-depth explanation. Other times it simply requires changing the language used. For language that seems particularly difficult to change, looking at a word's definition can help one refocus on exactly what information they are trying to express and how to do it in the simplest terms possible. Even concepts that may seem apparent should be defined. For example, the meaning of the word "citizenship" may seem obvious given its common use in every-day conversation. Yet, "citizenship" becomes much more complex and abstract within the context of academic conversations about rights, participation, and disability. However, even when dealing with abstract and complex theories and constructs, people with intellectual and developmental disabilities want to be and can be involved in the conversation. That is, as long as the information is presented in more accessible language such as in this summary on the Potential of Social Entrepreneurship, published in the journal Intellectual and Developmental Disabilities.

Another important part of knowledge translation is conciseness. The ideal length of a plain language summary is one-page. Both long sentences and large paragraphs of text, even text that is in plain language, can be overwhelming. It may be easier to write summaries using bullet points and descriptive headings. For example:

10 Steps to Making a Plain Language Summary:

  1. Find the core ideas and note the key concepts
  2. Make an outline
  3. Break down concepts into their most basic form
  4. Be concise by using language that is shorter and to the point
  5. Bullet points and pictures may help
  6. Include a full reference to the original article
  7. Check with self-advocates and their families to see if there is anything you need to change
  8. Check with others in your field to see if there is anything that you need to change
  9. Make sure the summary can be used by people using screen readers
  10. Make an audio version of the summary

However, since a bullet point format may not be appropriate for all content it is particularly important to be mindful of sentence and paragraph length. Long paragraphs may be better suited as multiple paragraphs or reduced to remove extraneous information. Long sentences may also indicate that concepts need to be further refined. Keep in mind that pictures may prove useful for explaining some concepts. Here are two resources that provide helpful guidelines for writing in plain language:

Once a plain language summary has been drafted it is important to member-check with self-advocates with disabilities and their families to ensure that the information is understandable. It is also important to member-check with one's research team and others working in your field to ensure that the summary still reflects the basic content of the article. As a result, changes should be made in response to feedback.

Take care to include a full reference to the original article somewhere on the plain language summary itself. Doing so serves a dual purpose in not only directing readers to where they can find more in-depth information if desired, but also upholds your copyright agreement with the journal publisher.

Finally, using plain language only partly ensures that disability access needs are met. To provide greater disability access, make sure that the document is formatted to be read by people who are using screen readers. Microsoft Word and Adobe Acrobat both have useful tools for creating accessible documents. Also, upload an audio version of the plain language summary. You can listen to an example audio file here on Accessing Social Entrepreneurship, from the journal Vocational Rehabilitation. 

Footnotes

  1. To further complicate the issue of access, some states have recently passed laws that require open-access to publications for research conducted at public universities. For example, Illinois' Open Access to Research Articles Act (Public Act 098-0295). At this point, it is not clear whether or to what extent these laws conflict with publisher copyright agreements. Further, it is not clear whether or to what extent providing plain language summaries of published articles would contribute towards compliance with such laws.

 


Debugging Information
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