Writing Factsheets for Patients & Families: Guidelines for NeuroDevNet



November 11, 2010


Table of contents:


Part One: Overview

Part Two: Guidelines


Part One: Overview

This Section gives an overview of the literature on translating science writing for patients and family.

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1. The Need

NeuroDevNet is the first trans-Canada initiative dedicated to studying children’s brain development from both basic and clinical perspectives. NeuroDevNet plans to provide consumer information to meet patient and family needs.

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2. Purpose

The purpose of this document is to bring together existing best practices and guidelines for writing scientific factsheets for patients and family. The end result is a guideline for translating science writing into plain language factsheets for patients and families.

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3. Literature Search

A literature search was conducted of health databases (Medline, CINAHL, Cochrane Reviews) and the Internet.

Search terms included, but were not limited to:

  • Patient information/education, consumer information/education, teaching materials, consumer health information, information resources, parent/caregiver information
  • Communicating information, knowledge/science/genetics transfer/translation/synthesis/communication
  • Printed/written education materials, pamphlet, brochure, material, handout, leaflet, print materials
  • Toolkit, guideline, best practice, value, effective, benefit
  • Autism, fetal alcohol, cerebral palsy, neurodevelopment, developmental neurology, genetics, developmental biology, brain imaging, brain development

Websites consulted included, but were not limited to:

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4. Themes in the Literature

Three overlapping areas emerge in the literature on science writing in plain language:

  • Knowledge translation, which is primarily concerned with a culture and process for synthesizing research and using it to improve health care. It frequently involves the translation of research into practice, with clinicians or policy makers as the primary audience. The Canadian Health Services Research Foundation has good information on writing in plain language for these audiences. As part of an overall knowledge translation strategy, an organization may make available information to patients and families. In general, there was little literature on writing plain language materials for patients and families from this perspective.
  • Science communication, which is concerned with media writing for a general public audience, often with the aim of affecting public policy.
  • Development of health education materials, which may involve (1) general information for patients and family, (2) patient education information designed to assist patients making choices or changing behaviours, (e.g., online patient decision aids) and (3) health marketing designed to make health practices more acceptable to patients (Paul, 2004). Reading health education materials can help patients to make their own informed decisions, involve them in their treatment decisions (and improve health outcomes), and help them to feel empowered about their health care (NHS, 2003). This area has been extensively researched (Centre for Literacy, 2003; Hoffman, 2004; Raynor, 2004) and many guidelines have been written by both health and literacy organizations to ensure that health information can be easily communicated to multiple audiences. Because this area focuses on an organization’s creation of materials for patients and families, it is considered the most relevant for creating guidelines for NeuroDevNet.

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5. Sample Guidelines

Examples of guidelines from each of the themes described above follow:

Knowledge Translation Guidelines

The Cochrane Collaboration provides consumer-level summaries of its systematic reviews. For example, the recommends 3 ways of informing patients: (1) relevance tables, (2) graphical displays using face figures, and (3) consumer summaries and patient decision aids (Santesso, 2006). Acknowledging the large literature on how to present information to consumers, they distill the elements needed into these four, all relating to writing the content:

  • Set the stage
  • Use a question and answer format
  • Use an active voice
  • Use short sentences and paragraphs
  • Present a balance of information

CMSG also recommends presenting information in different levels by producing multiple versions with increasing levels of detail, versions that would take a certain amount of time to read: a 1 minute, 5 minute, 15 minute, and 45 minute version. The longest version is designed to assist consumers in decision-making.

By contrast, CanChild creates only one document written in plain language for a range of target audiences and in it informs each group about how the research relates to them and to other groups with whom they work (Canadian Institutes of Health Research, 2006, p.99; Law and Kertoy, 2004). The guiding principles for CanChild written materials are:

  • Use language that is easy to understand by all audiences; avoid jargon and acronyms
  • Include recommendations that are written specifically for each target group
  • Use questions as headings to stimulate interest and provoke thinking
  • Use consistent formats and official logos to make documents recognizable

CanChild gives a broad overview of knowledge transfer in health care (Law et al, 2003) and in it recommends “Writing Health Information for Patients and Families” by Wizowski (2006) as an appropriate guide to use when writing for patients and family.

Science Communication Guidelines

Guidelines for science communication tend to focus on communicating with the media through print, radio and television. The reasons for communicating with the public via the media are often different than the reasons for providing patient and family information, the process is focused on media needs, and the end result may be a 30 second sound bite. Nevertheless, there are still similarities such as the need to communicate in plain language, communicating risk appropriately (Holland, 2008), and the use of visuals and storytelling which can be a particularly engaging way of reaching patients and family. For example, guidelines for researchers on communicating science to the public (National Sciences and Engineering Research Council of Canada, n.d.) include these:

  • Focus on a few central messages, using plain language to communicate them
  • Make stories relevant to the public, explaining how their lives will be affected
  • Use visuals such as photographs, illustrations, videos, models and charts

In the specific case of communicating the results of a particular research study to the public (as opposed to gathering together information to write a topical fact sheet), the Society for Research in Child Development (n.d.) gives guidelines, an outline, and examples for writing public summaries for a lay audience. Their guidelines are:

  • Summaries should be 300-500 words (12 point font, double spaced)
  • Create a user-friendly, catchy title that highlights the key study finding
  • Be sure that your summary answers: "What do the results mean?" and "Why is this study important to the public?"
  • Keep your language simple and non-technical-no jargon!
  • Use short, clear sentences
  • Do not use references in the text
  • Define any scientific terms critical to the context of the study that are unavoidable
  • Write as if you are explaining your study results to a non-academic neighbor

In some situations, public perception of an issue may differ from the professional, evidence-based view. Strategic Frame Analysis ™ (2010), developed by FrameWorks Institute, offers a systematic way to understand both sides of the story in order to narrow the gap in perception. Frameworks has investigated Child and Family Mental Health (2010) using their methodology since 2008.

Strategic Frame Analysis™ asks the following questions and develops answers based on a rigorous research process:

  • How does the public think about a particular social or political issue? What cultural models guide their reasoning?
  • What is the public discourse on the issue? How is this discourse influenced by the way media frames that issue?
  • How do these frames affect public choices?
  • How can an issue be reframed to evoke a different way of thinking, one that illuminates a broader range of alternative policy choices?

Conducting this type of analysis, particularly for issues where stakeholder perceptions may differ, may be a useful way to determine content for written materials and effective ways to communicate it. More information can be found at http://www.frameworksinstitute.org/ezine41.html

Patient Education Materials Guidelines

There are numerous guides on how to develop patient education materials. They stress the need for guidelines on content, design and processes.

The guidelines that follow in Part Two are primarily adapted from these sources:

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Part Two: Writing for Patients & Families

This section gives guidelines on how to write materials for patients and families. There are three overlapping areas on which to focus: developing content, ensuring a good design, and developing a good process. While the focus is on writing print materials, some reference is made to writing for websites and developing multimedia resources. Refer to the resources listed on page 8 for more detailed information.

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Developing Content:

1.1 Write in Plain Language

Why is it so important to write in a way that is easy to read, understand and use? It is well-documented that most print and web-based health information is too difficult for many people to comprehend (Wisowski, 2006). Plain language can help anyone understand health information, and especially those with low literacy skills . In Canada, 40% (9 million) adults struggle with low literacy and fall below a high school reading level, while over 3 million Canadians are below middle-school literacy skills (ABC Canada, n.d.). In addition, literacy and health are linked: those with higher literacy scores are more likely to be healthy, and people over age 65, recent immigrants and those with low income, low education or low capacity in English or French are most likely to have low levels of health literacy (Canadian Council on Learning, 2008).

Plain language writing is a patient-centred approach to writing, not a “dumbing down.” It is essential to understand the patient population and their needs. The Canadian Public Health Association (CPHA) recommends a Grade 8 reading level for the general public (Canadian Public Health Association, n.d.). For some target audiences, a reading level of grades 4-6 is recommended. CPHA offers a plain language writing service to organizations.

Much written information ultimately finds its way to the web. Sadly, health information on the web is most often written at university level (Sabo, 2008). One study reviewed websites on child development and found that while they were accurate, they were incomplete, unclear or difficult to access (Williams, 2008). Reading online is different than reading print materials. We know that most web users (79%) scan a web page for relevant words that match information they are seeking, reading only 20-28% of words on a page (Usability.gov, n.d.).Writing for the web involves similar principles as those given here but for more detailed information, see the following guidelines:

Follow these tips for writing in plain language:

  • Use common, simple words rather than jargon and acronyms
  • Explain difficult terms
  • Use active rather than passive voice, and present rather than past tense
  • Use short words and short sentences (less than 10 words per sentence), varying sentence length so that writing flows
  • List important points separate from the text or in a box
  • Write in conversational tone, using words like “I”, “you” and “we”, encouraging interaction with the reader
  • Write in a positive tone, avoiding frightening language
  • Make ideas stick by making messages simple, concrete, credible and emotionally evocative; stories can be effective (Canadian Health Sciences Research Foundation, 2008)
  • Use the same terminology through a document or series of documents. Develop an internal style guide with lists of terms that will be used within the organization, their capitalization, etc. (refer to 3.2.)
  • Use numerals for numbers rather than words (1 instead of one)

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1.2 Write for a target audience and address their needs

It is important to consider the age, gender, education level, support systems, learning disabilities and sensory impairments of the potential audience. Establishing a working group of 4-6 members of your target audience may be helpful in determining what interests them; likewise, focus groups of 5-15 people can help you to evaluate materials. In cases where there may be gaps between the target audience and the content expert’s understanding of issues, it may be helpful to conduct an analysis such as a Strategic Frame Analysis ™ (described in Part One).

Questions to ask when determining the target audience’s needs are:

  • Who is the target audience?
  • What is their previous experience?
  • Are there special characteristics of the target audience that are important to know about (e.g., age, gender, culture, religious beliefs, disabilities, health issues, motivations)
  • What do they already know? Some patients and family members may be well-informed, whereas others may not have background knowledge.
  • What does your target audience want to know? How will this information benefit them?
  • What do you want your target audience to know? Is there a difference between that and what they want to know? How will providing this information benefit your organization?
  • What, if anything, do you expect your target audience to do with the information? (e.g., make a decision, do something differently, reduce their anxiety)

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1.3 Ensure writing is bias-free and culturally relevant

  • Use language free of bias from sex, ethnicity, lifestyle, socioeconomic status, or career stereotypes
  • When writing about people with disabilities, refer to the person first and a disability second (e.g., children with Autism, not Autistic children) (Research and Training Center on Independent Living, 2001)
  • Check for bias towards commercial products or endorsements
  • Will materials be written in languages other than English? Consider whether translation from English into another language will provide a culturally-sensitive context or whether materials should be developed in consultation with a particular cultural group. Refer to Wizowski (2008) pages 69-74 for guidelines on translation:
  • Refer to NHS, 2003 Appendix 2 for additional information on how to meet special needs

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1.4 Organize the content

  • Organize the content to meet the target audience’s needs
  • State the purpose at the beginning
  • Use a logical, easy-to follow sequence, with a table of contents when there are many pages
  • Use small blocks of text
  • Use question and answer format or subheadings
  • Introduce one idea per paragraph
  • Use point form but include no more than seven bullets per topic

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1.5 Include References

It is important to reference materials in order to show the currency of the content, especially in areas where research changes quickly. It also is helpful to have the existing references readily available when revising materials. Also, some patients and family members will want to follow up by reading original research or in-depth sources on their own.

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1.6 Give additional information sources, such as local resources and supports or ways to find more detailed information

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1.7 Use illustrations

Using pictures or diagrams can help to enhance or explain the text. When presenting statistical information (such as risk), a picture is worth a thousand words.

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1.8 Use multi-media formats

It is now easy to create podcasts, videocasts and screencasts and incorporate them into a website. Multi-media content can encourage patient and families to engage with the information in different ways. For example, a scientist may explain a key point in a short (no more than 2 minute) audio or video segment as an introduction to a print document on the website. The Great Ormond Street Hospital for Children in the UK introduced audio and video podcasts to its suite of patient information materials (Moult et al, 2009). If accompanying multimedia materials exist, list them in the print material and vice versa. For an example of a web document that uses multi-media to create an online, interactive annual report, see the Mental Health Commission of Canada’s 2009/10 Annual Report http://www.mentalhealthcommission.ca/English/Pages/Annualreportviewingrequirements.aspx

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2. Design:

Clear design refers to the way the content is arranged and presented on the page in order to make it easy to follow and understand.

  • Use a simple font (e.g., Arial). 70% of patients preferred to read text in Arial rather than Times New Roman (Eyles, 2003 as cited in Wizowski, 2006, p. 39)
  • Use no more than 2 fonts in a document
  • The font size should be between 12 point (minimum) and 14 point. In one study, 83% of patients preferred a 14 point size (Doak, 2006 as cited in Wisowski, 2006, p.39). For elderly people or those with sight impairments, always use 14 point or larger.
  • Use a light background with dark print for best contrast
  • Justify the text to the left for easy reading
  • Use white space – white space is created with margins, space between sections and using point form
  • Use pictures to illustrate points from the text

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3. Process:

Develop organizational processes to take materials from the concept stage through to production. They may link with existing communications processes.

Should patients and family be involved in the process? A 2009 Cochrane review found moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This ‘consumer-informed’ material can also improve patients’ knowledge (Nilsen, 2009). A simple “Tell us what you think” survey can be used to solicit patient and family opinion, such as that provided by Wizowki (2008, pages 106 and 107).

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3.1 Planning

  • Determine who will be involved at each stage of producing the material, their roles and responsibilities (e.g., working group, content developer, writers, editors, reviewers, focus group, design, production, evaluators)
  • Determine the purpose of the material and the target audience(s) – refer to section 1.2. above
  • Will materials need to be written in languages other than English? Can they be translated? (refer to 1.3. above)
  • Conduct a literature review and determine what other materials exist on the topic
  • Give content developers instructions on how to write (e.g., these guidelines) and submit content (e.g., formats for document files, image files, video, copyright approvals, etc)
  • Set up a system for keeping track of versions of documents both internally (e.g., draft versions stored on file servers) and on the final document (so it can be withdrawn when out of date), and schedule regular content updates
  • Establish how the information will be made available to the target audience and whether additional formats are required – web site (html, pdf), print, multimedia
  • Determine a distribution and promotion strategy as part of this early planning process
  • Determine an evaluation strategy as part of this early planning process
  • Address budget or funding issues

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3.2 Writing

  • Produce a draft and check against the various checklists given above in 1 and 2
  • Develop a consistent template, such as key questions and answers that would be relevant for all materials being produced (e.g., What do we know? How does it work? Who does it help?)
  • Use a style guide to ensure consistent use of terminology and punctuation across all materials produced (e.g., Canadian Style, Canadian Press, Vancouver, AMA). Add to it words or phrases that are unique to your organization. Ensure material is referenced using a consistent style
  • Check your document’s readability to ensure it is written at the right grade level (grade 8 or lower). Use a tool such as the CLAD Reading Effectiveness Tool
    http://www.eastendliteracy.on.ca/ClearLanguageAndDesign/readingeffectivenesstool/start.htm or a SMOG calculator http://www.wordscount.info/wc/jsp/clear/analyze_smog.jsp
  • Obtain necessary copyright permissions when you are using content that is copyrighted and place permissions on file
  • Write on the document the date plus relevant version or updating information (e.g., Published September 2009, last updated September 2010, updated annually)
  • State the authorship and any other attributions (e.g., copyright permissions obtained) on the document, along with the organization’s name, address, phone number and website
  • State the copyright status of the document (e.g., ©All rights reserved). Clearly state whether you will allow others to use any part of the contents; use a Creative Commons license to specify the conditions of use: http://creativecommons.ca/index.php?p=explained
  • Follow an editing process, with appropriate consultation (as determined in 3.1.) to ensure the content is relevant, accurate, timely and representative of the organization

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3.3 Testing

  • Obtain feedback from professional staff as well as from patients and family
  • Pretest materials with focus groups (5-10 people) of the target audience. For a helpful tool to use with a focus group, refer to “Patient/Client Evaluation of Health Information Material” http://www.calgaryhealthregion.ca/yourhealth/guidelines/Forms/PtCl-Eval.pdf
  • Give a final draft to everyone involved and set a short deadline for them to respond

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3.4 Printing/Distribution Process

  • Ensure materials are branded consistently with the organization’s logo, colours, etc.
  • Give instructions for production, such as numbers to print or type of paper for print production, or graphic formats and web design specifications for web production
  • Review the final proof before print or release on the website
  • Follow the original distribution and promotion strategy (3.1.), revising as necessary, to make materials available to the target audience

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3.5 Evaluation Process

It is important to evaluate the materials produced. An evaluation gives you insight into whether to revise the material and other ways to make it available to your target audience.

  • Did the material meet the purpose for which it was designed? ( as determined in 3.1. and 1.2.)
  • How often is it used? (number distributed, website hits)

If a more comprehensive evaluation is to be undertaken, consider evaluation tools such as the Suitability of Assessment of Materials (SAM) with six evaluation areas: content, literacy demand, graphics, layout and typography, learning stimulation and motivation, and cultural appropriateness. (Shieh, 2008).

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