Building the Case for Health Literacy Proceedings of a Workshop (2018) / Chapter Skim
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2 The Patient Perspective on the Need for Health Literacy
2 The Patient Perspective on the Need for Health Literacy
Pages 5-14
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From page 5... ...
Ratermann's less-than-satisfactory journey in the health care system began in 2001, when at age 49 he had his first colonoscopy at an academic teaching hospital and had a 1-inch malignant polyp removed from his rectum. At the time, nobody told him that he needed to be seen on a regular basis going forward, and even when his wife, who was employed at this same institution, asked if her husband should get a second opinion, she was told by the chief executive officer -- a gastroenterologist -- that he was in capable hands.
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From page 6... ...
A whole academic health care system failed, and I nearly died because I did not speak up and ask questions. Because I finally decided to ask questions and speak up, I find myself here today." Ratermann recalled that when he began his career as a woodworker, a noted British furniture maker told him that a good and successful commission starts out with good conversation.
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From page 7... ...
We are human, and things do go wrong, and how we deal with error and mistakes is the real measure of who we are as human beings." Noting that he has seen both the finest in health care and some things that are unacceptable, he wondered how different his family's life would have been had his doctors taken a little more time and focused less on the bill. "Change has to come from the top, but the catalyst for change has to come from the bottom," he said, referring to his new and reluctant role as an advocate for patient safety.
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From page 8... ...
The first, she said, is that efficiency has been allowed to supplant empathy, something she learned in the summer of 1991 when she was battling what had been initially diagnosed as whooping cough and syphilis, then a blood cancer, and finally systemic lupus. She recalled asking the nurse who phoned her
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From page 9... ...
Pearce called lesson three "labeling at the expense of connecting." "Every organization I have worked in has a unique vocabulary, and health care is no different." What labels such as "noncompliant" and "frequent flyer," and medical acronyms such as "DVT" (a blood clot)
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From page 10... ...
In her mind, health literacy is not just about words but about the experience of health care, raising the question of how health literacy can infuse humanity into health care. "I am talking about creating health literate health care experiences, ones where people feel better when they come out instead of worse," said Pearce, who offered three steps for how health literacy can lead to better care.
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From page 11... ...
Pearce replied that Donald Berwick, the Institute for Healthcare Improvement's founder and current Senior Fellow, has written about the three eras of health care, starting with the paternalistic era that is ending, albeit slowly. The second era, which represents today's health care, measures everything, regardless of whether it needs to be measured.
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From page 12... ...
"We know that our current situation certainly makes it very difficult for both the patients and the providers," said Bakken. She then asked the speakers if they had any experience with the OpenNotes movement in health care (Leveille et al., 2012; Trossman, 2013)
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From page 13... ...
Pearce remarked that the health care system can and needs to do better than "care by accident." Earnestine Willis from the Medical College of Wisconsin thanked the two speakers for "letting us as physicians see a mirror of our system and the consequences of what can happen with these errors." She then commented on the fact that Ratermann's wife was his strongest advocate at a pivotal time in his journey and the importance of patients having an advocate when receiving critical information at times when it may be hard to comprehend or even hear that information. Her question to Pearce was whether the institution she worked at before becoming a consultant had a system for incorporating advocacy for patients at critical times in their care when it is easy to miss some of the finer pieces of information that are critical for making good medical decisions.
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From page 14... ...
As part of that project, the researchers did qualitative work with patients regarding what they want to see in a more understandable, actionable after-visit summary and found that there was little flexibility in the common EHR platforms to produce that type of information. Wilma Alvarado-Little from the New York State Department of Health noted that Ratermann's wife worked for the organization that mis iagnosed him and commented that just because someone works for a d health care organization does not mean that they are going to be getting honest responses.
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