Helping ‘super-utilizers’, fake orphan drugs, and more

January 19, 2017

We’ve changed our format so you can now read shorter summaries of more top stories. As always, we continue providing links to the many other articles relating to moving our health care system toward the right care for all patients.

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Over Martin Luther King Day weekend, 36 emerging leaders of the Right Care movement attended an intensive, three-day leadership training in Boston. The training brought together clinicians, patients, former health professionals, and advocates from 12 councils, growing chapters, and 15 states. Participants learned how to craft an engaging story, expand their networks effectively, strategically plan a campaign, and build a public narrative. “The training showed me that I am not alone. I am proud to tell others that I’m a part of Right Care,” said Randi Oster, RCA council member and President of Help Me Health.

“Super-utilizers,” patients with complex problems who frequent ERs for their care, make up only five percent of the U.S. population, but account for half of all health care spending. Jeffrey Brenner, MD, who heads the Camden (NJ) Coalition of Healthcare Providers, complains in a PBS NewsHour interview that we have been “medicalizing and criminalizing social problems” that affect these patients. The CCHP is reaching out to these individuals in local neighborhoods, and helping them access primary care, social services and housing—keys to improving health and containing costs.

A report from the Massachusetts Health Policy Commission, a statewide watchdog agency tracking health costs, finds that most of the state’s large physician and hospital networks regularly ordered unnecessary tests and procedures. The results, featured in the Boston Globe, included 2013 data from insurance claims. Coincidentally, the analysis was released last week after the launch of our  Right Care Series in The Lancet, which found that overuse, as well as underuse, are factors leading to widespread poor health care across the globe.

This week, JAMA features a series of four studies examining financial conflicts of interest in certain organizations, specialties, and guidelines. The series includes investigations of COIs in patient advocacy organizations, hematologist-oncologists on Twitter, organizations commenting on the 2016 CDC opioid prescription guideline, and in Hepatitis C and cholesterol management guideline committees. Among the most concerning findings—out of a national sample of 439 patient advocacy organizations, 67% received funding from for-profit companies in 2013-2014, with nearly 12% receiving more than half their funding from industry.

A Kaiser Health News investigation finds widespread abuse of the Orphan Drug Act, a law designed to incentivize research toward rare and neglected disease. Rather than develop necessary drugs to treat rare conditions, drug makers are repurposing drugs already approved for mass market use, to take advantage of the financial incentives and exclusive rights granted by the ODA. Out of about 450 drugs approved under the law since 1983, a third are not “true orphans,” Kaiser reports.


For the Lown Institute’s second annual Right Care Vignette Competition, we are seeking clinical vignettes written by trainees describing harm or near-harm from medical overuse. Winners will have the opportunity to submit their vignettes to the JAMA Teachable Moment series for review and potential publication, as well as receive a scholarship to the Lown Institute Conference. The deadline to submit a vignette is February 28, 2017. Submit your vignette here.

If you have a teammate or colleague in the Right Care Alliance who has demonstrated extraordinary passion and dedication to right care, nominate them for a Right Care Alliance Award. The award recipients will be recognized at the Lown Institute Conference. Early bird registration for the conference closes February 11, 2017 so register now!





Conflicts of interest



End of life



Lancet Right Care series

Med ed


Public health

Social determinants



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