by Jessica Ridpath, senior research communications consultant at Kaiser Permanente Washington Health Research Institute
October is a busy month at my house. Both school and football season are finally in full swing. Plus, my three kids and I all have birthdays in a span of less than three weeks. There’s a lot to celebrate.
Another reason to celebrate in October is Health Literacy Month — an opportunity to promote the importance of communicating health information in a way that’s clear and understandable to everyone. As a health research writer who specializes in plain language, clear communication is a passion of mine. It’s also a key ingredient in patient-centered care — one that gained prominence after the 2004 Institute of Medicine report, “Health literacy: A prescription to end confusion,” showed that most health information given to patients is too complex for them to understand.
In the research world, health literacy has implications for the very foundation of ethical research: informed consent. Unless researchers communicate in a way that everyday people can understand, how can consent be truly informed?
To tackle this challenge, Kaiser Permanente Washington Health Research Institute established the Program for Readability In Science and Medicine (PRISM) in 2005, shortly after the IOM report was released. PRISM provides plain language editing services to KPWHRI research teams and offers two free resources customized for the research community:
While the PRISM toolkit and training provide a comprehensive look at strategies for using plain language in research, you don’t need a deep dive to get started. Here are five quick tips you can use next time you’re writing for a lay audience:
1. Use common, everyday words.
This can be a challenge when you write scientific grants and manuscripts for a living. Try thinking about how you would explain your study to a friend or family member who doesn’t have a scientific background.
2. Use examples and analogies to help explain complex concepts.
For example, you can describe randomization by saying it’s “like flipping a coin” (when your study has two groups) or “like drawing names out of a hat” (when your study has more than two groups).
3. Write in a conversational style, as if you were speaking.
This is easier to accomplish when you use active voice and write in the first person. For example: “We will collect information from your medical records,” instead of “Information will be collected from your medical records.” It’s also helpful to step away from the computer and simply speak your thoughts. Take note of what you say and how you say it — then jot it down.
4. When you’re done writing, read your document out loud.
This is probably the best way to identify convoluted language that might creep into your writing. When you hear the words being said, you’re more likely to notice areas for improvement.
5. Ask a non-scientist to read what you’ve written.
This is especially important because, in research, we often use familiar words that have a specialized meaning. A health literacy researcher once told me about an interesting experiment: She gave a research consent form to a group of 8th graders. Their #1 question? “When do the police get involved?” She was perplexed until her eyes landed on the word “principal investigator” at the top of the form … and the popular TV show “CSI” (short for “Crime Scene Investigator”) flashed across her mind.
It’s no secret that plain language is easier for everyday folks to understand. But it also has the potential to help engage participants in research. Effective engagement is essential when it comes to things like genetic research and personalized medicine — where long-term success depends on millions of people agreeing to donate blood or other samples to a biobank.
Biobanking is among the most complex concepts to describe in a research consent form. That’s why I was so pleased to stumble upon a recent study that looked at using plain language materials to supplement the biobank informed consent process.
Published in the Journal of Cancer Education, the study is based on the same plain language strategies that PRISM uses: active voice, short sentences, familiar words, etc. In fact, study authors cited the PRISM toolkit among the guidelines they used to develop their materials.
Participants in the study not only found the plain language consent materials to be clear and understandable — they also felt the content had been written with their needs in mind. I can only imagine this would be a positive factor in a potential donor’s decision to share their sample for research.
On the flip side, it’s all too easy to turn people off to our research when we use language that’s confusing. My favorite example of this comes from a consent form that described ongoing data collection as “following participants for two years.” Who would want to volunteer for a research study if they think it literally involves being “followed” by an “investigator”?
Health Literacy Month is a reminder that we can all be more thoughtful and engaging in how we communicate. I hope you’ll join me in making plain language a priority in research — it’s the least we can do for the many generous study volunteers who make our research possible.