Like government, academic institutions are a source of high quality health information. Much of it is focused on supporting and reporting on research. Consumers receive health information from academic about:
- New treatments – academic medical institutions partner with other organizations, such as pharmaceutical and medical device companies, to conduct clinical trials.
- Research opportunities – researchers design and conduct studies at academic institutions examining a wide variety of health topics with funding from private, non-profit and government sources.
- Research results – researchers report results to funding agencies, study participants and institution donors.
In order to recruit and enroll participants, researchers must clearly and compellingly communicate study goals and objectives. Studies must recruit and enroll diverse participants in order for research results to be generalizable to the population. This requires culturally and linguistically appropriate recruitment messaging and enrollment practices.
Academic institutions and their Institutional Review Boards (IRBs) are also responsible for communicating and protecting the rights of people involved in research. Research participants are generally asked to give “informed consent” prior to joining a study. Unless consent forms are written in plain language and easy to understand, participants may not be fully informed about what they’re agreeing to, including potential risks and benefits. In a representative subsample of informed consent materials gathered from 24 U.S. medical schools, the mean score for readability was 13.1 Almost half of adults in the U.S. read at or below the 8th grade level.2 It is no wonder that even after signing a consent form, people often do not understand the risks, benefits, and alternatives.3
- Paasche-Orlow, MK, Taylor, HA, Brancati, FL. (2003). Readability standards for informed-consent forms as compared with actual readability. New England Journal of Medicine. 348:721–726.
- Communicating with patients who have limited literacy skills: report of the National Work Group on Literacy and Health. (1998). Journal of Family Practice. 46:168-176.
- Shoemaker, S, Brach, C, Edwards, A, Chitavi, S, Thomas, R, Wasserman, M. (2018). Opportunities to Improve Informed Consent with AHRQ Training Modules. The Joint Commission Journal on Quality and Patient Safety. 44:343-352.