The development and diffusion of communication technologies has increased expectations in all sectors of our lives, including the health sector. The web is ever-present; smart phones and computers are ubiquitous. We are urged to go to a particular site, to tweet, to post, to instant message, and to engage [see you online].' Innovative programs reach out to participants at various times of day; medical records are being posted; questions are posed and answers provided; discussions take place unencumbered by geographic distance. We speak easily of the 'information age' to describe our times with its instant access to information.
Because of such instant availability, adults are increasingly being asked to assume responsibility for acquiring and using information related to many aspects of their own health and that of loved ones as well as for the well-being of their communities.'
People are expected to be aware of scientific and medical findings as well as of emerging issues and new processes and products. They are expected to engage in a wide array of health related activities at home, at work, in the community, in health care settings, and in the policy arena.
With instant information comes instant responsibility. Every day we expect patients to be responsible for the breadth of information at their fingertips.
They are asked to use information to modify daily habits and engage in health promoting activities, to use caution and protect their health, to be proactive and make use of disease prevention and early screening opportunities, to access care when needed and engage in directed follow-up, and to monitor their health trends and the developments in their communities.
After all - knowledge is at their fingertips.
Has access to health information, to scientific and medical findings, to explanations and directions, to warnings and action plans truly opened and expanded?
In some ways, of course, it has. However, there is no indication that information is any more accessible than previously provided in black and white print on the page. We certainly know from over 1,500 published studies that written health materials have been and continue to be assessed at levels that far exceed the average reading skills of U.S. adults. Increasingly, we are learning from new studies focused on the oral exchange that words used in discussions often get in the way. We have learned that labels on foods, products, and drugs are not clear and not designed for easy use.
When words, numbers, concepts, organization, and format are not well designed with the user in mind, then ' despite the knowledge contained within ' the information is not accessible.' It's easy to forget how much our language has transformed as a result of our training. Words, concepts, numbers, visuals, and data displays are essential to communication but can, at the same time, erect barriers to understanding.
This is not a call for increased use of readability formulas even though the number of words in a sentence and the number of syllables in a word may offer a hint about the probable difficulty of English texts. We know that a good deal of public health, medical, nutrition, or dental jargon will not be identified through such assessments.
Consider words such as risk, stool, portion, or tissue. We use words that we rarely explain and yet assume common understanding. We intend to instruct and to motivate others to take action but do not consistently provide coherent instructions and clear explanations. Consider the notion of 'being at risk because test results are outside the normal range'. 'Risk', 'normal', and 'range' are mathematical concepts we rarely define. Other aspects of our sophisticated new media require a careful assessment of barriers as well.
The current literature indicates that we in the various health disciplines provide texts that are poorly written and organized, web sites that are hard to navigate, as well as charts and graphs that are difficult for many to interpret and use.
We need to move beyond the easy count and formulaic assessment tools and more closely examine the clarity of the words we use, the assumptions we make, and how we structure and display our information. We need, most of all, to engage in discussions and analyses with our intended audiences.
Those working in health must insist on greater rigor in the development of messages, materials, postings, and tools. Well-articulated protocols for the development of any health materials are readily available. Government and private institutions must insist on specified rigorous processes and that, at minimum, all materials undergo pilot testing with potential users. On the practical side, we know from health education and health communication studies that engaging members of the intended audience in the development, design, and piloting of materials subsequently offers a better fit. In addition, such processes represent respectful engagement with members of the public we wish to serve and safeguard.
Change is difficult.
It's easy to forget how much our language has transformed as a result of our training.
We may not recognize that we often speak and write in a specialist's English that the layperson does not understand. It is too easy to push the 'print' button feeling that the directions we just wrote or the trend lines we plotted are worthy of distribution and use.
Findings from health literacy studies over the past decade have provided us with clear evidence that our assumptions are faulty and that a mismatch between actual skills of users and the content and format of provided information leads to untoward health outcomes, measured in terms morbidity and mortality. The adult literacy surveys conducted in 1992 and again in 2003 and the subsequent analyses conducted and published provided clear indications of the literacy skills of the U.S. public and, yet, our field has done little to change our communication efforts to match even the average skills of the public.
It is time for action.
We can make information truly accessible and usable by adding needed rigor to our work.
Question: How do you work (or will you work) with users and laypeople to ensure what you create is truly clear and understandable?
This post originally appeared at EngagingthePatient.com
- Understanding Your Medical Risk: Nice or Necessary?
- Are We All Ready for Do-It-Yourself Health Care? - Jessie Gruman
- Informed Consent & Doctor-Patient Communications in the News
- Say What? Do Patients Really Hear What Doctors Tell Them? - Carolyn Thomas
- Pothole Forming Ahead: Aging and the Migration of Health Services and Information Online - Jessie Gruman