The perfect storm of personalized medicine, a stronger understanding of how people make healthcare decisions, and new challenges created by replacing face-to-face conversations with phones and screens has made it more important than ever to combat complexity in healthcare communications. Unfortunately, people with learning disabilities, low literacy levels, poor health literacy, and nonnative language skills are often excluded from the routine health monitoring that patient reported outcomes (PROs) can provide.
Health Literacy
Whenever possible, PROs must be developed for use by patients with different backgrounds, computer skills, health literacy, and languages. We’ve discussed the importance of using principles of health literacy earlier in this space. There are various ways to overcome issues of literacy and health literacy to promote participation of underserved groups in PROs:
Adhere to basic accessibility principles when designing PROs, including easy-to-read versions, large fonts, and ample white space.
Allow patients to choose where they want to complete PROs and encourage them to ask for help from friends, family, or professionals.
Clearly communicate the purpose and value of PROs to patients to reduce pressure and frustration caused by filling out health forms.
Use questionnaires administered through verbal interviews (though this in turn could introduce bias).
Conduct readability assessments like Flesch-Kincaid grade level or SMOG index score to ensure that participants with different literacy levels and educational experience can easily understand your content. But use these tools with caution. Flesch-Kincaid gives the sentence, “A risk averse mien has been his staple since high school,” a grade of 2.6—which means a second grader should be able to understand it.
Employ copy editors who are well versed in plain language and health literacy principles.
Cultural Needs and Languages
People from different cultures may describe their symptoms differently and may have unique preferences. Efforts to capture PRO need to accommodate the needs of all users. To ensure you can generalize your results across all groups and subgroups, consider these actions to include individuals from relevant cultures within the target population:
Be attuned to cultural values and preferences, including whether PRO captures key concepts or your data collection method considers the needs of the target population.
Use international cultural guidelines for the translation and cultural adaptation of PRO measures.
Use interpreters or translators during interviewer-led assessments.
Implement usability testing to identify the needs of these individuals and empower them to accurately report their health.
Develop a user-centered system (i.e., a process conducted with users that involves continual refining or tweaking) to help create functional tools for patients.
Why it Matters
The Patient Voice Consortium at Syneos Health Communications is dedicated to bringing the patient voice into every aspect of drug development. That includes an accommodation of cultural differences and adherence to principles of health literacy.
The Consortium brings together plain language, behavioral insight, and actionable steps to help patients and advocates make personal decisions with confidence. Our plain language summaries (PLS) are designed for patients and their supporters who are actively seeking scientific information. They translate dense clinical publications into non-technical language to fuel understanding by people of various backgrounds and literacy levels.
