Communicating Clearly About Medicines Proceedings of a Workshop (2017) / Chapter Skim
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2 Patient and Caregiver Perspectives
2 Patient and Caregiver Perspectives
Pages 5-16
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1 This section is based on the presentations by Bobbie Reed, the mother and caregiver of a kidney transplant recipient and the Pennsylvania Kidney Advocacy Committee Liaison for the National Kidney Foundation; Caleb Sexton, a patient with psoriatic arthritis, an advocate with the National Psoriasis Foundation, and a designer who focuses on health literacy technology research and human-centered design; and Darvece Monson, a nurse, patient with chronic kidney disease waiting for a kidney transplant, and founder of the advocacy organization More Than Your Kidneys. The statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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'" Sexton, who has been dealing with the life-changing experience of having psoriatic disease for the past 10 years, agreed with Reed that services such as specialty pharmacies can play an important role in providing patients with a better foundation for understanding their medications. Such services can help patients learn how to communicate the issues that can arise when someone takes multiple medications and has to deal with
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From page 7... ...
She polled her fellow patients at her local dialysis center and found out that 87 percent of them did not know about this type of medication complication. She also noted that most of her fellow dialysis patients were coming from nursing homes and acute care centers and were drained by the experience of traveling to the center and undergoing dialysis.
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She then asked the panelists to state the one question they wish their prescribing clinicians would ask them when prescribing medications or changing a medication regimen. Sexton said he wanted to be asked what his biggest fear was, for in his mind this would have conveyed empathy regarding the challenges he would face and a willingness to help him, both then and in the future, deal with the unknowns regarding the many medications he would be taking for the rest of his life.
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From page 9... ...
Next, Parnell asked the panelists for their ideas on what clinicians can do to enhance communication, whether written or oral. One suggestion Reed had specific for kidney dialysis patients, which she heard from her son's posttransplant coordinator, is for there to be multiple education sessions for patients during which they would gradually learn about their medications.
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From page 10... ...
She said that care team members need to do more to raise awareness of those assistance programs, other safety net programs, and even clinical trials that can help patients deal with the cost of their medications. Sexton said one of the most fundamental and simple innovations would be to reframe the perspective of care providers when thinking about these long-term chronic conditions.
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DISCUSSION Terry Davis from the Louisiana State University Health Sciences Center began the discussion by recounting a story told by her research assistant, who said she was tired of the health care system thinking of her solely as a patient with type 1 diabetes who should be treated with the standard evidence-based treatment protocol and not as a 28-year-old who runs marathons, goes camping, and drinks beer with her friends. She then asked the panelists if they had any idea how to get clinicians to think beyond the standard treatment protocols and consider how individuals lead their lives.
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From page 12... ...
When she suggested afterward that it might be better if the transplant center could hold a series of mini-workshops at which potential patients and their caregivers could be given the same amount of information at a more reasonable pace and in a more interactive learning environment, she was shot down. Reed also noted that while her son's experience at the dialysis center was largely positive, the experience of being on the transplant waiting list was "a horrendous experience" that involved interacting with five different transplant coordinators.
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She noted that she and her husband are proactive parents who make sure that their son has regular dental appointments as well as an annual dermatology exam because of his elevated risk of developing skin cancers as a result of the medications he takes. Laurie Francis from the Oregon Primary Care Association commented that the remarks so far point to the convergence of patient care, humancentered design, and health literacy, and their impact on medication compliance.
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Robert Logan from the National Library of Medicine noted that there are medical centers in the United States that specialize in listening to a patient's life and journey stories and embrace diverse comments as a foundation of patient-centered clinical care. Logan cited the Nuka System of Care model practiced by the Southcentral Foundation in Anchorage, Alaska,5 as an example of how innovative approaches to listening to patients also are 5 See https://www.southcentralfoundation.com (accessed on March 31, 2017)
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From page 15... ...
He added that while technology, data, and social media are important elements to caring for patients with complex illnesses, personal involvement, concern, and communication remain key elements.
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