"Brainsuckers": The Changing Face of the 21st Century Patient
The appearance of the typical patient in the 21st Century departs significantly from that of the average patient in the 20th Century. These days, many patients visit their medical providers armed with diagnosis and treatment options in one hand, and pricing information kept secret for years in the other--most of which is information obtained from a slew of sources on the internet. Individuals from all ends of the spectrum have come together to discuss the pros and cons of these "brainsuckers" (a phrase coined by Dr. Scott Haig for those patients who research their symptoms). By all accounts, it seems that the United States Congress will take the opportunity to chime in on the debate, too.
An article published by American Medical News entitled "Bill Aimed to Improve Health Literacy," caught my attention today because it discussed legislation introduced in the United States Senate directed to further educate consumers about their health. S.2424 aims "to ensure that all Americans have basic health literacy skills to function effectively as patients and health care consumers."
According to American Medical News, the legislation, if passed, "would establish a health literacy implementation center to gather and disperse information and to devise national improvement strategies." The center would be charged with the development of a health literacy curriculum for elementary and secondary schools, colleges and adult education programs. According to the article, the American Medical Association backs the legislation.
I'm generally a proponent of the educated consumer and believe that there could be far-reaching benefits to the legislation. Given the lively debate on these issues, however, I'd be interested in hearing the opinions of others who disagree.
As currently written, the Act is open to counter-productive misinterpretations and potential lawsuits to limit the Act's effectiveness on several issues. Specifically, the current wording of the Act can be construed as:
-Limiting activities to only those that target the public. Missing is any explicit legal authority to target the skills of health care professionals and improve their abilities to successfully interact with individual patients or the public at large.
-Lacking explicit support for efforts that move beyond simply providing understandable information. The Act can be (and will be by those whom it serves politically) read as not enabling the proposed state centers to work toward use of health information to change attitudes and behaviors. In terms used at the World Health Organization, this will preclude any efforts to solve the “Know-Do" gap, or the often substantial gap between what we know and what we actually do. As written, the legislation only explicitly supports efforts targeting the 'know' but not the 'do' component that is so necessary to improve health and reduce inequities in health.
-Lacking explanation of how “appropriate" is to be defined. As appropriateness is a function of value systems and is impossible to validly and reliably evaluate as a programmatic function, the reference should be removed from the Act.
-Missing an opportunity to draw on the spirit and language of Executive Order #12898 of 1994 to support explicitly targeting not only improvements in health literacy and health, but to also target reduced inequities in health.
The Act should use a more complete and easier to read definition (thus living up to the principles of health literacy). Suggested wording is, "Health literacy is the range of skills and competencies used to find, understand, evaluate, and use information to make decisions about health. Health literacy is a critically important social determinant of health that can be used by health professionals and the public to improve individual, family, and community health and reduce inequities in health."
Finally, a more strategic use of the data gathered by the health literacy component of the National Assessment of Adult Literacy is to accurately report that 88% (nearly 9 of 10) of the participants in that survey are below the “proficient" level in health literacy. This use of the data is most effective if cast in light of the knowledge from over 300 studies of the complexity of information about health. These studies indicate that successfully navigating health information and the health care system requires a proficient level of health literacy.
Additional suggestions include (but are not limited to):
-Removing all use of the word "comply" and replace with the phrase 'informed decision making'.
-Add reference to a goal of developing and disseminating health literacy interventions and tools, including curricula and quality improvement measures for medical and nursing schools.