Patient Engagement

A growing body of evidence shows that people with higher patient activation (i.e., the knowledge, skills, and confidence to become actively engaged in their health care) have better health outcomes. Ongoing research seeks to determine the relative contribution of measures of patient activation and health literacy to these improved outcomes.

Some conceptualizations of health literacy include aspects of motivation and self-efficacy. However, other conceptualizations limit health literacy to a more skills-based construct that involves the reading, math, speaking, and listening abilities needed to make informed health decisions. While an individual’s motivation and confidence to engage in health self-management are often not measured as part of health literacy, they are included in measures of patient activation.

Below is a summary of research into these constructs, how they relate to each other, and their potential for improving outcomes such as

• Health information seeking, comprehension, and use
• Mental and physical health
• Patient self-advocacy
• Costs

Health literacy, patient activation and health information seeking, comprehension and use

A study published in 2014external icon investigates the relative contribution of patient activation and functional health literacy to the seeking and use of health information among adults in The Netherlands. While the researchers acknowledge alternative definitions of health literacy, such as broader definitions that include aspects of motivation, skills and self-efficacy, they employ a functional definition limited to the basic reading and numerical tasks required to function in a health environment. Among a sample from a consumer panel, they find patient activation to be a stronger predictor for seeking and using health information than functional health literacy.

Patient activation is a strong predictor for seeking and using health information.

Two of the three items used to measure functional health literacy were significantly related to patient activation. Those who were more confident with filling out medical forms had higher patient activation scores. Those who agreed with having problems learning about their medical condition because of difficulty understanding written information had lower patient activation scores. Patient activation was not significantly related to receiving help from others with reading.

Hibbard, Peters, Dixon and Tusler (2007)external icon assess the contribution of health literacy, numeracy and patient activation to the comprehension of comparative hospital performance reports, as well as quality choices based on that information. They found numeracy skill to be the strongest predictor of both comprehension and quality choices. Health literacy was also a strong predictor of both. Patient activation was only moderately predictive of comprehension and quality choices. However, activation was found to contribute more to the outcomes for those with lower numeracy and health literacy skills, compared to those with higher skills. Thus, higher activation may compensate for lower skills.

Health literacy, patient activation and mental and physical health

A 2021 study published in Health Literacy Research and Practice assessed whether cancer health literacy and patient activation are related to health-related quality of life (HRQoL) in patients with breast cancer. The researchers had study participants complete

• The 6-item Cancer Health Literacy tool to assess cancer health literacy
• The 13-item Patient Activation Measure to assess patient activation
• The 27-item Functional Assessment of Cancer Therapy to assess HRQoL

High patient activation was a statistically significant positive predictor of HRQoL but adequate cancer health literacy was not.

The authors suggest that the lack of a statistically significant relationship between cancer health literacy and HRQoL could be due to the two-category nature of results on the 6-item Cancer Health Literacy tool (limited cancer health literacy vs. adequate cancer health literacy) and the fact that 92% of the patients in the study had adequate cancer health literacy. The authors recommend that future research should use the longer 30-item Cancer Health Literacy tool or other instrument that measures health literacy along a continuum rather than one that has only two categories of results.

A study published in 2013external icon examines the association between health literacy and patient activation as they are most commonly measured among a cohort of older adults. They measured health literacy with the Test of Functional Health Literacy in Adults (TOFHLA) and measured patient activation with the Patient Activation Measure (PAM). The relationship between health literacy and patient activation was weak, but significant. The researchers also examine the independent and combined associations of health literacy and patient activation with physical and mental health. Lower health literacy was associated with worse physical health and depression. Lower patient activation was associated with worse physical health and depression, as well as anxiety. Patient activation was the stronger predictor of the two measures for all health outcomes.

Health literacy and patient self-advocacy

Martin et al (2011)external icon examine whether reading, numeracy, speaking, and listening skills are associated with patient self-advocacy when faced with a hypothetical barrier to scheduling a medical appointment.

Patient self-advocacy includes participating in decisions about one’s care.

They define patient self-advocacy as the extent to which individuals demonstrate an increased assertiveness or willingness to challenge providers or other medical authority, and to actively participate in decision-making to ensure they receive the treatment they feel best meets their needs.

They found all literacy skills to be significantly associated with advocacy when examined in isolation. However, greater speaking and listening skills remained significantly associated with better patient advocacy when all four skills were examined simultaneously.

Patient activation and health outcomes and costs

A study published in 2015external icon examines the extent to which a single assessment of patient engagement, the Patient Activation Measure, was associated with health outcomes and costs over time. The Patient Activation Measure is scored on a scale of 0 to 100 and indicates four levels of activation which reflect a progression from being passive with regard to one’s health to being proactive. They found an association between higher activation and improved health outcomes, as well as lower costs, two years later.

Hibbard & Greene (2013)external icon review the available evidence of the contribution of patient activation makes to health outcomes, costs, and patient experience. In addition to finding evidence of higher activation being associated with better health outcomes and care experiences, they also find evidence that patient activation can be increased through intervention.

Health literate organizations and patient engagement

Howe, et al. (2020)external icon assessed organizational focus on health literacy in North Texas hospitals. This was a mixed-methods study, conducted with a convenience sample of 74 key informants from 13 hospitals across five health care systems. Study findings indicated limited leadership and little systemic promotion of efforts to ensure health-literate health care organizations, although individual health literacy champions sometimes stepped up with creative initiatives. In addition, informants reported very few instances of patient inclusion in the development, implementation, or evaluation of health information and services. The authors provide actions that clinicians, midlevel managers, and executive leaders can take to make their organizations more health literate.

Koh, Brach, Harris & Parchman (2013)external icon propose a Health Literate Care Model that would infuse health literacy into all aspects of a health care organization, including planning and operations, self-management support, delivery systems design, shared-decision making support, clinical information systems to track and plan patient care, and helping patients access community resources. Central to this model is the support of productive interactions at both the individual and organizational levels. Perhaps most aligned with the concept of patient activation, the self-management support element of the Health Literate Care Model encourages patients to be empowered and prepared to manage their own health and health care.