Over the past several years, there has been a proliferation of health insurance benefit designs and tremendous growth in new care delivery settings that have moved health care beyond the traditional brick-and-mortar physician offices to retail and even virtual settings. In the face of these rapid changes, consumers encounter many more choices when they are shopping for their health insurance and health care.

To better understand this evolving landscape, the Robert Wood Johnson Foundation (RWJF) awarded grants for eleven research studies in 2015, under a funding opportunity managed by AcademyHealth. These studies are concluding in 2017, and they sought to better understand how consumers are navigating the health care system, with a particular focus on consumers’ experiences, preferences, and values. The studies cover a diverse array of topics, from the physician and hospital qualities that consumers value to whether consumers are engaging in cost-conscious, or value-promoting, behaviors in high-deductible health plans.

While trust was not the explicit focus of any of the eleven studies, this portfolio has generated some enlightening early observations and findings around consumers’ trust in the health care system.

People First

One area of consensus across many of the RWJF grantees is that when it comes to making decisions about their health care and health insurance, most consumers rely on close personal relationships, with physicians being the top-reported trusted source across a number of projects. David Schleifer and colleagues surveyed people who had recently experienced type 2 diabetes care, joint replacement surgery, or maternity care and found that the most common interpersonal quality that people across all three groups say is very important for high-quality care is that a doctor makes time for patients’ questions and concerns.

Beyond doctors, consumers also reported trusting friends and peers. For example, in her study examining adolescents’ perceptions of telemental health, Tammy Toscos and colleagues found that while most adolescents are dealing with stress on their own, when they need to talk about stress, they strongly prefer to talk with friends or peers versus family members, parents, teachers, coaches, school counselors, or health care providers. More than half of those surveyed prefer face-to-face communication over telemental health options (such as online chat, video chat, and so forth).

In his study comparing the experiences of enrollees in California’s health insurance marketplace, Covered California, to similar people with employer-sponsored insurance (ESI), Patrick Romano and colleagues found that ESI participants turned to their network of trusted work colleagues and human resource professionals to support their health plan selection. Conversely, consumers in the California marketplace often lacked these trusted sources and relied on outside sources (for example, the Internet, the Covered California telephone hotline, independent insurance agents, and so forth), and consequently they reported less satisfaction with their decision-making support.

Interestingly, when Kathryn Kietzman and colleagues interviewed people dually eligible for Medicare and Medicaid, the researchers found notable differences in the information sources whom dual eligibles identified as trustworthy when choosing between a fee-for-service or managed care plan. While older adults, people with complex care needs, and Spanish-speaking participants tended to trust information provided by people with whom they had long-standing relationships, younger adults and English-speaking consumers were more likely to seek out multiple sources of information, including sources provided by the state of California or the Cal MediConnect health plan.

Anne Libby and colleagues surveyed and interviewed Medicaid enrollees who chose the emergency department over a primary care medical home for a low-acuity condition and found that some respondents reported trust in the hospital or health system over the individual provider or care team. Since these enrollees’ access to health care had always been hospital based, they felt attached to the overall institution based on prior, positive experiences.

The Source Matters

The studies described above demonstrate that access to trusted sources of information is essential in supporting consumers as they consider treatment options, shop for health care, and select, buy, and use their health insurance. Yet, notably, many of the trusted sources fall outside the traditional health care system, demonstrating that not just the information but also the information source matters.

Multiple grantees found that consumers report distrust in their health insurer. Romano and colleagues noted that participants in both Covered California and ESI found navigating health plan selections to be complex and difficult, which engendered feelings of distrust in the health plans. In past RWJF-supported work, Schleifer and colleagues found that most Americans—68 percent—think insurance companies are mostly interested in making money. They also found that nearly 40 percent of Americans think that of hospitals, and more than 25 percent think that of physicians.

From this portfolio of projects, it’s clear that the information source matters. And it’s not just who presents the information that is important, but also where the information originally comes from, as well. David Auerbach and colleagues examined consumer trust in potential sources of hospital quality information and found that many consumers expressed doubt about the source of quality information behind the Centers for Medicare and Medicaid Services’ hospital “star” ratings. In particular, they doubted whether insurers actually used quality information to make network/tiering decisions. Overall, 50 percent of consumers trusted hospital quality information coming from doctors, compared with 13 percent if it came from health plans, and an even smaller percentage if it came from employers or government websites.

Within the area of mental health care, James Boswell and colleagues found that nearly 80 percent of community mental health center patients surveyed indicated that they would trust information on mental health providers’ track records based on routinely collected patient-reported outcome measures if that information were made available. However, patients did express concerns about how that quality information might be used, including a concern that provider performance data may be weighted too heavily by health systems and could be used to unfairly punish providers.

How To Build Trust And Respect For Patients In The Health Care System?

Findings from this portfolio of projects reveal that consumers’ trust in the formal health care system is nuanced. While most report trusting their individual physicians, friends, and family, few report trusting their health insurer or other segments of the health care system.

Other, recent RWJF-funded work from Oliver Wyman and Altarum Institute indicates that there is also an important relationship between trust by patients and respect for patients, which informs how patients perceive medical advice. They found that patients who feel disrespected by doctors are far less likely to trust doctors overall and are less likely to take their prescription medications as directed, which has important implications for health care quality, outcomes, and costs.

Little evidence exists on how to build trust and mutual respect to improve health care and to address and overcome the health disparities that exist across different patient populations, including diverse racial and ethnic populations, lower-income populations, the uninsured, people with complex health and social needs (including people with acute behavioral health needs or multiple chronic conditions), and others.

A new Call for Proposals (CFP) from the RWJF seeks to address this gap in the evidence base and will fund empirical research studies to better understand how to build patients’ trust and foster mutual respect across the many facets of the health care system. The CFP has a particular focus on vulnerable populations. The CFP, managed by AcademyHealth, is open until 3 p.m. (EDT) on October 13, 2017.

What are the health consequences of patients’ perceptions of health system trustworthiness? How can trust be measurably built and maintained? Apply with your ideas.