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.

4) I will get unnecessary treatment or treatment that will harm me. Harmful overuse of procedures in the U.S. healthcare system is not uncommon. The idea that ‘more is better’ is not easy to displace. Fee-for-service invites perverse incentives to do more than the patient actually needs.

5) I will be denied needed care.  Necessary care is sometimes denied to patients, often by medical insurance companies. Treatment may also be effectively denied because of the high costs of drugs that patients cannot afford. For example, one-third of patients without health insurance cannot pay for their drugs as prescribed. Likewise, fear of high medical bills, especially from out-of-network billing, may cause enough fear in a person that he or she does not seek necessary medical care.

6) I will not be given all the information I need to make a good medical decision. Incomplete informed consent is commonplace in healthcare and typically falls short of what a reasonable or prudent patient would expect to know before agreeing to an invasive procedure. Although shared-decision making is slowly replacing informed consent as the benchmark for clinicians to engage patients, time constraints on busy clinicians may make this ideal a challenge to achieve, especially in patients with several comorbidities.

Our survey was initiated via email on November 24, 2018 and closed on March 1, 2019. Our demographics included age, gender, and type of health insurance. The 1133 responses to six questions were analyzed using non-parametric Kruskal-Wallis one-way analysis of variance by rank sum. Locations within the U.S. from which responses were received based on zip codes were well dispersed. For all questions, more than 50% of the responders indicated that they were somewhat worried or very worried about a quality factor (range 54 % to 59 %). Statistical analyses revealed several significant differences. Across all questions, women were more worried than men, and those who did not want to reveal their sex were most worried of all. People without health insurance were consistently more worried than other insurance groups, especially when it came to being denied needed care.

Below we discuss some potential improvements to patient worries, especially their greater involvement in care experiences at all levels, that may mitigate worries.

Trust of doctors may be improved by widespread use of communication platforms such as OpenNotes. Patients that have full access to what their doctor is thinking trust more. At another level, state medical boards must become more vigilant in dealing with physicians that harm patients. One approach to improving physician accountability is to welcome more patient advocates to state medical boards. Policies that insist on shared-decision making between patient and doctor when an invasive procedure is an option must become the norm. Reducing misdiagnosis may yield to technical solutions, such as artificial intelligence; however, immediate changes based on patient experience should happen. For example, because of second opinions, patients know when an initial diagnosis was mistaken. Healthcare systems must make patient feedback on misdiagnosis a cornerstone of their quality improvement strategies.

Reducing infection risks is a prime target for the Centers for Disease Control and Prevention. Unfortunately, over-prescribing of antibiotics that leads to resistant infections continues to happen too often. Patients may take an active role in reducing resistant infections by asking about the necessity of an antibiotic when one is prescribed. Likewise, unnecessary or harmful treatment may be reduced when patients become better informed about all their options, know the right questions to ask, and learn to avoid unnecessary screening. An intentional educational module for high-school and college students about avoiding overuse should be part of the curriculum of health classes. There should also be improved education of older adults when end-of-life treatments are based on what can be done to the patient rather than what can be done for and with the patient.

Obtaining needed medical care can be a challenge for those without health insurance or those living in remote areas. Note that 82% of our respondents without insurance worry about being denied needed care. When patients experience exclusion from healthcare, they should make appeals to healthcare leaders for changes to a more equitable system. Making an informed medical decision depends on sufficient information reaching the patient. This will not only improve doctor trust, but is more likely to lead to less overuse and better outcomes. Patients should know to ask about decision aids. Our survey was administered via email and in English. It depended on access to email and the ability to read English. Disadvantaged groups may be underrepresented.

Ideally, patients should never have to worry about the quality of care they receive when they are ill or have a serious disease. Our study has shown that Americans worry about the quality of healthcare. These worries are not ill-founded. In fact, they underscore reports in medical literature and the media calling for improvements in healthcare quality. Our survey has given direction to what the American healthcare industry must change to earn back the trust of patients it is supposed to serve.

The authors are the Leadership Team of the Lown Institute’s Right Care Alliance Patient Council. Lead authors are John James, Patient Safety America, and Robert R. Scully; associate authors are Casey Quinlan @MightyCasey, Bill Adams @Poorcountryboy2, Helen Haskell @hhask, and Poppy Arford.