The workshop’s last session had the members of the roundtable providing their reflections on what they learned over the course of the day’s proceedings. Kim Parson said that the entire process has to be thought of in the context of a partnership between health care providers and their patients, a comment reiterated by Betsy Humphries, deputy director of the National Library of Medicine. “If we want these [discharge instructions and after-visit summaries] to be of value to patients, we need to engage them in the design of them,” said Parson, adding that the work presented at the workshop showed the value of moving away from a check-the-box mentality. “We need to recognize that one size does not fit all,” said Parson. Lori Hall, consultant for health education at Eli Lilly and Company, added that the discharge plan is a tool and cannot replace the human element when educating patients about the various aspects of their care after discharge. She also commented that it is important to remember that information overload is real and that handing a patient a thick booklet of instructions without having a person there to explain important items is likely to lead to more problems than it solves.
Laurie Myers, leader of Health Literacy Strategy for Merck & Co., Inc., thought that the roundtable needs to bring a broader range of people to the table, including pharmacy representatives. Her colleague at Merck, Margaret Loveland, said that the presentations and discussions made it clear that, above all, discharge instructions have to be meaningful, succinct, up to date, and accurate and that they have to account for cultural and language issues specific to individual patients. She also noted that it is important to remember that discharge instructions are not just a document
to hand to the patient. “We have to do education prior to discharge, and we have to follow up postdischarge,” she said. Terri Ann Parnell agreed with Myers and added that it is easy to lose sight of the fact that these documents are the patient’s and that they have to be created and used with the patient always at the center of the process. Laurie Francis noted, too, that discharge summaries can be an important part of the process that helps patients navigate the system by increasing health literacy.
Cindy Brach remarked that the CMS readmission payment incentives make hospitals a more responsive audience for this work. “I think we have less traction in the outpatient setting, which is where a lot of the care that is delivered keeps patients out of [the] hospital, so we need to think more about that,” she said. Brach also reminded the roundtable of another workshop on patient-centered prescription labels at which a speaker challenged the attendees to step up and use the models that had been developed and tested. “U.S. Pharmacopeia stepped up to the plate and proceeded to assemble an advisory group to come up with standards that they then published as recommendations for a patient-centered label,” she recounted. “I think that we are at that point with this topic, and I think that the IOM Roundtable on Health Literacy could be moving this forward. Getting vendors, clinician associations, and patients together to help the market realize this opportunity is something where we could make a contribution as a group.”
Benard Dreyer said, “I do feel that the train is leaving the station on this issue. EHR vendors and hospitals are well into this, and it is going to be much harder to get them to change once it is established. This is the time to intervene, rather than to wait until it gets solidified. I would urge us to think about how we can do that and maybe have a serious discussion,” he said.
Robert Logan said that as someone who approaches health literacy from a nonclinical perspective, the workshop’s presentations reminded him of the importance of comprehensive data integration and assessment of a patient’s condition. He was reminded, too, that discharge information and health education are a shared responsibility that involves primarily physicians, but also includes nurses, community health workers, and health coaches, and that the design of this tool needs to consider all of these as both sources of information and health educators. He also noted that a key piece of information for many patients is what is new or different about their condition and what to do about that.
Bernard Rosof proposed that there be a framework to discuss the issues of health literacy and discharge summaries that involves the National Quality Strategy and the IOM. “I think we can put this together in terms of patient safety, family- and patient-centered care, care coordination, and decreasing the leading causes of mortality in a framework of a learning health system; then we will accomplish a lot of what we have said around the table,” Rosof stated.
Andrew Pleasant noted that he heard a concern about the balance between regulation of these documents and the information they contain but that this concern disappeared when the conversation shifted to one focusing on learning what the patient wants first. He noted that “even the best document process, if it is in a misaligned system, will be limited in its effectiveness. To just focus on the document or to just focus on the process without also focusing on the larger system and the culture that supports that system would be an incomplete solution.” Champions, he added, are going to be important for accomplishing the system and culture changes that are needed to create a health-literate system that is more effective for patients.
Pleasant added that he did not hear much at the workshop about the role of theory in informing the design of discharge instructions and after-visit summaries. “There is a true role for theory so that you know why you are doing what you are doing. It’s called the scientific process, and it works pretty well,” he said. Patrick McGarry was concerned that there was no mention at the workshop of how the Health Insurance Portability and Accountability Act affects the transmission of electronic data in EHRs. He also echoed the concern of his roundtable colleagues that the effectiveness of these documents to truly inform a patient must be demonstrated. “If people don’t understand what is in those documents, they are going to go to the Internet. That is where they are going to get their information, which may or may not be accurate,” he said.
Rima Rudd was encouraged by the signs that the field is turning a corner. “We are moving away from a myopic focus on the patient’s capability of accessing information. Instead, we are focusing on our creation of accessible information,” she said. She, too, was worried that scientific rigor might suffer in the haste to develop better discharge instructions. “We are too accepting of shortcuts when it relates to information exchange. We have to insist on scientific rigor,” she said. Part of being scientifically rigorous is to build on accumulated knowledge, something that the field needs to do better. As a result, she said that she was coming away from this workshop as a stronger supporter of regulations than ever before. “Not regulations on the content of what goes into the after-visit protocol but on the process of how these are developed,” said Rudd.
Steven Rush, director of the Health Literacy Innovations Program at UnitedHealth Group, cautioned that in the rush to ask patients to use websites, portals, smartphones, and other forms of electronic communication, it is important to teach them how to use these valuable tools. He mentioned research showing that unless there is a personal touch that goes along with these electronic tools, many people will stop using them in about 2 weeks.
Making the final comments, George Isham said that he was struck by the fact that the after-visit summary is only a fragment of what the patient
needs in order to achieve good health. “I can’t get away from that thought that the after-visit summary is part of something larger, or ought to be part of something larger, in terms of what we are trying to do to help the patient get information, access services, and so forth.” He also acknowledged the frequently voiced concern that health care providers and health care systems are overwhelmed by the information they have to convey as much as patients are overwhelmed by the information they need to absorb. “That is a sign that our health systems need to approach patients differently in the modern age. You cannot do it the same old way with the same old technology and the same old professional skills in the complex modern world and not feel overwhelmed,” said Isham. “That means the way we are going about it is wrong, not that we need to dumb down the approach.”
