Challenges in Navigating the Health Care System: Development of an Instrument Measuring Navigation Health Literacy

Due to their rapid expansion and complexity, it is increasingly difficult for patients to orient themselves in health care systems. Therefore, patients require a high degree of health literacy, or more precisely, navigation health literacy (HL-NAV). The actual extent of HL-NAV of patients and citizens is still largely unknown due to the lack of adequate measurement instruments. Thus, within the new international Health Literacy Population Survey 2019 (HLS₁₉), one aim was to develop a suitable instrument for measuring HL-NAV in the HLS₁₉ the HL-NAV-HLS19. The item development was conducted by an international working group within the HLS₁₉ Consortium led by the first and last authors. Methodologically, it is based on a scoping literature review, development of a conceptual framework for HL-NAV, and first item formation, as well as an evaluation by experts, stakeholders, focus groups, pre-test interviews, and continuously feedback from the HLS₁₉ Consortium. HL-NAV was defined as the ability to access, understand, appraise, and apply information on navigational issues, drawing on ten selected publications and the health literacy definition of the HLS-EU Consortium. Main tasks of HL-NAV at the system, organization, and interaction level were identified, to which first related items were assigned. Based on the feedback from experts, the focus group discussions, and the HLS₁₉ Consortium, the instrument was slightly revised. Finally, twelve items proved to be feasible in the pre-test. The instrument will be used for the first time in the HLS₁₉ survey and will provide first data on HL-NAV in general populations for the countries participating in HLS₁₉. It is suited for cross-country comparisons and monitoring, as well as for intervention development. However, the instrument should be translated into and validated in further languages and countries for population samples.