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Right Care Action Week events, guidelines for incidental findings, and unproven treatments used

September 1, 2016

In order to bring you more of the news you want to read, RightCare Weekly summarizes and interprets three important articles and provides headlines linking to the many other articles and editorials you’ll find interesting. As always, RightCare Weekly presents articles related to moving our healthcare system toward the right care for all patients.

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Right Care Action Week is right around the corner. This year’s theme is listening, the bedrock of good care. During the week of October 16-22, clinicians, patients, and community members around the country are planning events to demonstrate how much better health can be. For example, doctors like Murray Levin, from Highland Park, IL, will be holding a Listening Booth to learn from passersby about their health care experiences. (Read more about Levin’s event in an upcoming feature.) In Indianapolis, Melissa Adams VanHouten, a gastroparesis patient and online support group administrator for people with this chronic illness, has organized a RCAW event that encourages people to listen to patients’ personal health stories. For their second year participating in RCAW, VanHouten’s online group, Gastroparesis: Fighting for Change (GFC), will be hosting a Story Slam and Photo Blitz on their Facebook page. Participants will post stories and photos throughout the week about their experiences with the health care system. Gastroparesis patients experience vomiting, and stomach pain, making it difficult to work or even to leave the house; having an online event gives home-bound patients a chance to participate in RCAW and share valuable stories. By listening to these patients, physicians can learn how to enhance the care they provide. And sharing stories benefits patients as well. “It helps patients to know that others are willing to listen to their stories,” says VanHouten. Read the full blog about VanHouten’s event, and stay tuned for more RCAW profiles. And don’t forget to join us. Sign up now!

Imaging tests, such as x-rays, CTs, and MRIs, can help physicians diagnose disease, but they may also present radiologists with a dilemma. Scans often show unsuspected lesions or tumors, called  “incidental findings.” The vast majority of incidental findings, sometimes called “incidentalomas,” will never harm the patient. Yet radiologists have generally felt compelled to tell the patient and referring physician about them. As a recent paper in the Journal of the American College of Radiology points out, these low-risk findings can lead to “unnecessary testing, invasive procedures, and overtreatment.” Incidental findings have increased due to more precise scanning technology, creating a snowball effect of additional tests and procedures (such as skyrocketing treatment of thyroid tumors, as recently reported in The New York Times). In an article in the The Wall Street Journal, two of the paper authors, Stella Kang, MD, and Arthur Caplan, PhD, argue for a different way to handle incidental findings: Rather than disclose and treat all incidental findings automatically, there should be guidelines that take patient preferences and risk factors into account, to help radiologists and referring doctors decide whether or not to disclose. Kang and Caplan acknowledge that more research is needed to create effective guidelines, and even with guidelines, patients and doctors will still worry about incidental findings. “We are not that great at living with uncertainty,” said Caplan.

In STAT this week, Sheila Kaplan writes about families of children with DIPG, a rare form of brain cancer, who have appealed to their congressional representatives for access to an unapproved treatment provided by a Houston cancer clinic.  The clinic is run by Stanislaw Burzynski, MD, who has been skirting the FDA for decades in order to sell his unapproved – and unproven – treatment. The federal agency and state medical board have received numerous complaints about the doctor’s practice, including reports of deaths of patients from the treatment. Yet, 37 lawmakers wrote to the FDA from 2011 to 2016, intervening on the behalf of their constituents for the drugs, which family members have been led to believe can cure their loved ones. Critics have called for Burzynski’s clinical trials of his treatment to be shut down. “If Burzynski’s concoction actually cured cancer, we’d know it by now,” said Shannon Brownlee, MSc, senior vice president of the Lown Institute. “I’d be shocked if he’s actually conducting a real clinical trial, so I’m not sure what members of Congress think they are doing for their constituents.” The FDA acknowledged that it grants nearly all appeals for patient access to experimental treatments. Meanwhile, according to STAT, the Texas Medical Board has accused the doctor of “unethical and unprofessional conduct regarding clinical trials of gravely ill patients, including improper care, deceptive advertising, and the use of unlicensed staff.”

Announcement:

The First Annual Conference launching the National Center for Complex Health and Social Needs will take place December 8-9, 2016 at the Sheraton Society Hill in Philadelphia. The conference will focus on how to deliver better care through coordinated, data-driven, and patient-centered approach with attention to the social correlates of health: housing, transportation, hunger, and education. Learn more here.

Headlines

Overuse

Ethics

Disparities

Clinician health

Medical studies

Evidence

Access

Pharma

Health care model

Aging

Prisons

Doctor-Patient communication

Mental health

Organizing

Med ed

End of life

RightCare Weekly is made possible through the generous support of the Robert Wood Johnson Foundation.