Informed Consent and Health Literacy: Workshop Summary by Joe Alper

Author:Joe Alper
Language: eng
Format: epub
Tags: ebook, book
Publisher: The National Academies Press
Published: 2015-03-25T00:00:00+00:00

6

Reflections on the Workshop

Cindy Brach started this session by recounting what she heard regarding the tools that are available to create a new culture in health care organizations. Her list started with medical and continuing education, IRB education in the case of research, and legislation and regulations, including those that state which standard applies and that mandate access to language-appropriate documents or translators. Malpractice suits and the threat they hold are also a potential tool, and she asked Christopher Trudeau if he would provide a list of the most salient cases in that area after the workshop’s conclusion. She thinks that efforts to empower patients to demand change and to support leadership that drives change should also become part of the toolkit for culture change. Brach asked if there are other things that leadership cares about that can be a driver for change, such as patient-centered care or shared decision making. She also commented on the need to “hardwire” these change agents through sustained attention and the role that better consent forms, communication tools, supervision, and documental and other structural processes can play as levers in that regard.

Kim Parson commented that what she heard was that the current system for informed consent is not effective for any person, no matter the health-literacy level. She noted that there have been many attempts at making processes and documents more patient friendly, that these efforts should be applauded, and that the lessons learned from those efforts should be applied going forward. The unintended complexity that results from the intended protections put in place by state departments of insurance and through multiple regulations from federal agencies has a disproportionate impact on patients, caregivers, and providers, she said. Parson thought that the day’s discussions were a good starting point for further exploration of the impact of rules and regulations on organizations’ abilities to act in a health-literate manner. Parson also heard that the opportunity exists to compile best practices for informed consent that are built on the concepts of simplicity, human-centered design principles, and, above all, partnerships with patients and participants. “By co-creating with patients who have experienced the informed consent process and with people who are potential participants in the process, we will discover their needs and how they want those needs to be met. The results will be a more knowledgeable, willing, and engaged end user while we are achieving the goals of those seeking consent,” said Parson. George Isham added the comment that the next step may be for the roundtable to convene a conversation around determining needs and wants and design principles.

Lori Hall commented that she is often inspired by sources outside of health care and noted a book called A Whole New Mind by Daniel Pink. In this book, Pink talks about how in this age of information overload, although it is possible to create efficiencies and streamline processes, the power of empathy should not be overlooked. With that in mind, she noted that nothing replaces the power of human engagement to induce change.

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