Among many health disparities which mar healthcare quality in the United States, there’s another one to add to the list: health and healthcare information access.

Access to health care is underpinned in large part on a health consumer’s access to information about available health care services, their location, price, and if the patient is very fortunate to glean, quality. As people take on more responsibility for managing their health care utilization and financing in America, their access to information that is easy-to-find, clear, comprehensive and current is critical to personal and public health outcomes.

But consumers are dissatisfied with the state of health care information in their lives, discovered through a survey supported by Robert Wood Johnson Foundation and Oliver Wyman, and conducted by the Altarum Institute. Results of this study were published in the report, Right Place, Right Time: Health Information and Vulnerable Populations.

Oliver Wyman featured these findings in a conversation held at the World Economic Forum in Davos week titled, Vulnerable Populations and the Great Health Divide.

The study’s top-line insight was that vulnerable US health citizens are health information-compromised. This group of people tends to be uninsured, Spanish-speaking, caregiving, and enrolled in Medicaid. The lack of health/care information access jeopardizes care access and quality, putting people at-risk for worse health outcomes, eventual higher costs, and greater burden of disease compared with people who enjoy health information access. Health consumers want financial transparency; simpler, direct language; mobile-friendly formats; and, respect. This is a lightbulb moment finding in the survey; see the Hot Points, below.

The study’s key findings were that:

  • Consumers demand cost information and mobile-friendly websites
  • Consumers seek improvements to information about cost of care, accessibility, and comparisons
  • Caregivers use the most health care information but struggle to find resources to helpthemselves
  • Uninsured people have greater difficulty accessing health care information
  • Spanish speaking people struggle with language barriers, and rely on friends and family to offer advice and remedies
  • Patients who feel disrespected by providers are less likely to trust health care information or follow medical advice.

For the poll, Altarum Institute interviewed 4,068 consumers via a mail and web survey, and conducted interviews and focus groups with 65 consumers. Research was fielded between June and August 2016.

Health Populi’s Hot Points:  The role of respect in the relationship between patient-consumer and provider cannot be underestimated, based on the clinical evidence found in this study. Specifically: feeling disrespected was linked to medication non-adherence.

32% of people without health insurance feel disrespected, this study found. People who are sicker tend to feel less respected, as well as those with lower incomes.

The Rodney Dangerfield feeling of “can’t get respect” leads to health consumers being three times less likely to trust information provided by their doctors. Furthermore, patients who feel disrespected by providers are twice as likely to be non-adherent to medication regimens. For example, people with diabetes (PWD) who do not feel respected are one-third more likely to have poorly-controlled diabetes compared with PWDs who feel respect from their providers. 

User-centered design is mandatory for the health information economy. Health information portals are poorly utilized because they lack good design informed by patients’ values, digital literacy, and life-flows. Empathy is part of this ethos. The report notes that, “Good patient-provider relationships are not just part of good bedside manner…positive patient-provider relationships should be considered a medical priority, and should be encouraged through training, education and, potentially, compensation changes.”

Throughout the health/care ecosystem, as we work to incorporate health in all policies and cultures of health, we must be mindful that empathy, caring, and respect are key ingredients in user-centered design. Check out the approach of Dignity Health’s #hellohumankindness as an example of branding and delivering on empathy in healthcare.