By CASEY QUINLAN, HELEN HASKELL, BILL ADAMS, JOHN JAMES, ROBERT R. SCULLY, and POPPY ARFORD
Last year, the Patient Council of the Right Care Alliance conducted a survey in which over 1,000 Americans answered questions about what worried them most about their healthcare. We asked questions about access to care, concerns about misdiagnosis, and risks of treatment, which we reported on in our last THCB piece about the What Worries You Most survey.
We also asked people to rank their concerns about the costs of their care, in five questions that covered cost of care, cost of prescription drugs, cost and availability of insurance, and surprise billing. In the time since we ran the survey, everything has changed in American healthcare. The COVID19 pandemic is filling emergency rooms wherever the epidemic arrives. Bills are likely to be high, for both patients and insurers, and it is still far from clear how they will be paid. Americans are likely to continue to worry deeply about healthcare costs, with good reason, since it’s only in America that someone can go bankrupt due to seeking medical care.
By JOHN JAMES, ROBERT R. SCULLY, CASEY QUINLAN, BILL ADAMS, HELEN HASKELL, and POPPY ARFORD
Political forces trying to shape and reshape American healthcare without hearing the voice of patients provided the rationale for this work. Our experiences as patients, caregivers, and users of media sources cause us to worry. The Patient Council of the Right Care Alliance developed 6 questions to form a national survey of Americans to guide policy makers. The questions and our rationale were as follows:
1) Finding a doctor I can trust. Trust in our doctors is not as high as it once was. There are stories of serious patient abuse that appear in the media; two of the more notorious examples include a neurosurgeon harming many patients before being stopped and an oncologist who was deliberately misdiagnosing cancer to sell chemotherapy. Patients perceive this as the reluctance of the physician community to effectively ‘police their own.’
2) I will be misdiagnosed. Misdiagnosis happens far too often at all levels of healthcare. The problem is so common that the National Academy of Medicine turned its attention to the problem and published Improving Diagnosis in Health Care in 2015. The solution to the misdiagnosis problem is complex and has yet to arrive at the clinician-patient interface.
3) I will get an infection while receiving treatment. Healthcare-associated infections have dropped somewhat in the past decade, yet there are still about 720,000 infections and 75,000 deaths per year from healthcare-associated infections. Many of these are becoming nearly impossible to effectively treat. The improper use of ordinary antibiotics continues to be a problem in clinical settings.