I just finished re-reading “The Immortal Life of Henrietta Lacks” by Rebecca Skloot (Broadway Books, 2010). This book is a must-read if you work in human laboratory research, clinical research, and/or bioethics. I originally bought (and read) the book the day it was published, having waited for months in anticipation for its print. Reading it now, five years after its original release, I was struck most about what this book means in the era of “patient-centric” research.
According to the 2003 National Assessment of Adult Literacy (NAAL), only 12% of American adults have a “proficient” level of health literacy, while over one-third (77 million), have difficulty with basic health tasks, such as following directions on a prescription drug label (http://health.gov/communication/literacy/issuebrief/). Breaking proficiency down by racial/ethnic groups, almost 60% of Blacks (the racial background of Henrietta Lacks and her descendants) have a basic or below basic health literacy.
Health literacy is also correlated with age. A basic or below basic health literacy is seen in 50-70% of people age 65 or older. Since this population is a large consumer of health care, ensuring that they properly understand their condition(s), medications, and needed course of action must be a thoughtful and intensive practice for people interacting with these patients.
Of course, health literacy extends beyond clinical care and into biomedical research. Researchers must realize who their research populations are and their level of health literacy. “The Immortal Life of Henrietta Lacks” highlights this issue. This book illustrates that, while we have made great strides in medicine over the last 50 years, we have not made similar strides in public education on medicine or research.
There is plenty of literature and recommendations regarding health literacy in practice (for example, the recommendation by many IRBs that informed consent forms be written in 6th to 8th grade language), but these are not systematically implemented. The Institute of Medicine has a roundtable dedicated to health literacy, publishing approximately two dozen reports on the topic in both clinical practice and research (explore the Institute of Medicine’s reports from their Roundtable on Health Literacy).
Five years after Ms. Skloot introduced Henrietta and her family to the world through her book, highlighting the consequences of miscommunication (and non-communication) between the scientific community and public, we have not seen much change towards modifying research materials to be more understandable to the health illiterate. It is the scientific community’s duty to be transparent, ensuring that the public is aware of the research being done, can contribute ideas and opinions regarding the design and conduct of research, and can trust the scientific community in the processes used to answer valuable health questions. To best answer the questions that mean the most to the community, the researcher must embrace the public as a partner in the research process. To effectively partner with the public is to educate them in a manner they can understand.
What are your thoughts? How have you been successful in partnering with the public? Please share your story in the comments section below.