Knowledge Is Power: Improving Health Care Information For The Most Vulnerable

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In health care, being an informed consumer is essential to promoting positive outcomes. Whether the issue is finding affordable care where prices vary widely, minimizing harm from medical errors, or just finding a provider, knowledge is power. Navigating the health care system is hard enough, even for health care professionals. Our most vulnerable—the uninsured, those in poverty, family caregivers, and non-English speakers—are at high risk of receiving lower-quality care, in part, because they lack the information to make choices that work for them.

To address this problem, the Robert Wood Johnson Foundation has launched Right Place, Right Time, a special research initiative to better understand the challenges that vulnerable patients face in accessing health care information and to create recommendations for improving access to such information.

To investigate the health care information needs of vulnerable patients, this project includes three coordinated studies over the spring and summer of 2016. To understand vulnerable patients’ experiences, Altarum Institute conducted semistructured interviews and focus groups with sixty-five vulnerable health care consumers (including the low-income people, caregivers, and Spanish speakers mentioned below), in addition to interviews with middle-income patients and Medicare retirees for comparison. A national survey will soon follow to quantitatively measure the prevalence of the challenges as well as reception to the possible solutions that emerged from the interviews. To hear the marketplace perspective, the consulting firm Oliver Wyman is interviewing leaders at more than 100 health care organizations, including providers, health plans, employers, and others, to learn about their experiences and challenges in serving the vulnerable.

This blog post will review five recurring themes that have emerged from patient interviews and focus groups. Subsequent blog posts will explore each theme in greater detail.

Accessing health care information

Many lower-income patients described their friends and family as being their most important source of health care information, but they often went online to search for such information. Participants often did not know of specific health care information resources and used relatively generic search terms rather than specific search terms, and doing so often limited the success of their searches. Simply put, many vulnerable patients do not know about the health care resources available and do not know to look for them.

However, when vulnerable patients would discover a resource, such as patient reviews or medication price comparisons, they found these resources invaluable. However, they often did not know of these resources before their search.

In comparison, while many middle-income people also did not know of specific health care tools, their searches were precise enough to find helpful resources quickly. This suggests a possible solution: in response to nonspecific health care searches, search engines or other sites could recommend links to high-value resources that users may not know to look for, such as tools for finding the right doctor, comparing prices, or comparing quality of care.

Additionally, while many lower-income people do not have regular access to a computer at home or work, they very often have access to the Internet through mobile phones. Making health care information that is online mobile-friendly is essential to empowering lower-income patients.

Trust and respect between patients and providers

A persistent theme from our interviews and focus groups is the pervasive role of trust and respect between providers and patients. For many lower-income patients, respect was their primary concern regarding their health care. Lower-income patients often went to patient reviews to look for indicators of poor treatment of patients like them. Many patients sought out provider photos in an attempt to determine which providers would treat them with the most respect. Participants described looking for a “friendly face” but may have been using additional visual cues to anticipate their prospects in the patient–provider relationship.

Patients cited concerns about receiving lower-quality care because of their income status, race, and insurance status. Several participants refused to visit particular facilities because of past negative experiences. In particular, lower-income patients reported experiencing rude staff, condescending providers, and a feeling that their health concerns and physical pain were disregarded.

Because we did not study patient–provider interactions directly, we can only report patient perceptions of these negative encounters. However, these perceptions are discouraging many patients from seeking the care they need. While middle-income patients expressed a desire to be treated well, few reported such negative experiences, and they rarely influenced their care decisions.

Health care from nonphysicians

We also observed how frequently vulnerable patients met their care needs through nonphysicians, such as friends with some medical training and pharmacists. This was often because patients could not afford a visit to a doctor, could not get time away from work, or did not have childcare available to see a doctor during regular business hours. Participants often told us of relying on home remedies and self-care recommended to them for most of their care. For many participants, their pharmacist acted similarly to a primary care provider. Pharmacist consultations, which are free and available without an appointment, overcome two of the largest barriers to lower-income people accessing medical care—cost and time. Many lower-income patients actually reported more loyalty to their pharmacist than to their doctors. We did not hear of similar experiences from middle-income patients.

Family caregivers’ concerns

In speaking with sixteen family caregivers, we observed that caregivers were often pushing the frontiers of health care information by adopting new tools, such as patient portals to view medical records; using health apps; and gathering as much health care information as possible—more than most middle-income patients were doing. Many caregivers expressed frustration about the resources available to support them. For many, other caregivers were the most valued resource for both informational and emotional support. One particular problem we observed is that foster parents are not allowed to access their foster children’s medical records, despite being responsible for the health care of their foster children. This presents enormous challenges to foster parents in advocating for their foster children’s health needs when the child’s medical history is kept secret.

Spanish-speakers’ concerns

We also spoke with fifteen Spanish-speakers to understand their experiences and concerns. For many, the language barrier was a concern, but surprisingly, many participants reported that their limited English had not been a barrier to receiving good health care information or good quality of care. Overall, Spanish-speakers looked for less information online and reported that their most common sources of health information were friends and family, Spanish-language television, and flyers in Spanish-speaking areas. We did observe that, as supported by prior research, many Latino immigrants perceived the role of medical care as primarily for acute injuries and illnesses, rather than for preventive care or chronic disease management. Many with chronic disease, such as diabetes or high blood pressure, were not seeking or receiving regular care and did not perceive this as problematic.

This post has briefly reviewed some of the recurring themes from our interviews and focus groups with sixty-five vulnerable patients. We will explore each of the issues above in greater detail and bring in survey results where available in future blog posts hosted at Altarum’s Health Policy Forum. Updates will be posted below as they are published.

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