Conceptualising health literacy from the patient perspective

Abstract

Objective

A person's health literacy, i.e., their ability to seek, understand and use health information, is a critical determinant of whether they are able to actively participate in their healthcare. The objective of this study was to conceptualise health literacy from the patient perspective.

Methods

Using comprehensive qualitative methods 48 individuals were interviewed across three distinct groups in Australia: those with a chronic condition, the general community and individuals who had recently presented to a metropolitan public hospital emergency department. Purposeful sampling was employed to ensure a range of experiences was captured.

Results

Seven key abilities were identified: knowing when to seek health information; knowing where to seek health information; verbal communication skills; assertiveness; literacy skills; capacity to process and retain information; application skills.

Conclusion

This study identifies key abilities patients identified as critical to seek, understand and utilise information in the healthcare setting. These abilities are not reflected in existing measures for health literacy. Future measures of health literacy could consider incorporating abilities identified in this study and may provide guidance in developing health interventions to assist patients to participate effectively in their health.

Practice implications

More comprehensive measures to assess patient's health literacy are needed.

Introduction

We live in an information-rich environment in which daily activities are negotiated through competing and sometimes contradictory sources of information [1]. This is particularly relevant in the healthcare setting where the advent of patient-centred care means that information seeking practices and patient actions and reactions towards information take on greater importance in managing their own healthcare [2], [3]. This process assumes that patients have adequate ‘health literacy’. The term health literacy encompasses an individual's ability to seek, understand and utilise health information. Research has shown that individuals with inadequate health literacy have less knowledge of their diseases and treatments and a lack of skills needed to negotiate the healthcare system [4], [5], [6], [7], [8]. As such, health literacy has gained prominence amongst governments, health professionals and researchers. A report by the United States Institute of Medicine (IOM) identified health literacy to be one of the most important opportunities to improve population health [9].

Health literacy is a rapidly developing area and its meaning has expanded to encompass a range of concepts. Landmark reports such as the IOM recognise health literacy as a complex phenomenon that has moved from a narrow conceptual focus on patient literacy skills such as reading to being a far more multi-dimensional construct where patient skills or abilities interact with education, health, social and cultural influences [10], [11], [12]. Similarly the World Health Organisation, describes health literacy as “the cognitive and social skills that influence peoples’ motivation and ability to gain access to, understand and use information in ways which promote and maintain good health” [13]. However as highlighted by Baker, the lack of a shared understanding of the central term in a field is problematic, particularly in the area of measurement. There is continuing debate as to the underlying constructs that should be measured based on whether health literacy is a capacity of a person or dependent on the relationship between individual capacities, the healthcare system and broader society [14].

An apparent gap exists between current definitions and measures of health literacy. The predominant approach to assessment has been direct testing of individual literacy (reading comprehension) and numeracy abilities, as assessed for example by the Test of Functional Health Literacy in Adults (TOFHLA) [15]. However these constructs do not reflect the range of attributes implied in existing definitions related to an individual's ability to seek, understand and utilise health information [10], [13], [16]. Future research directions in the health literacy field have consistently identified the need to develop broader measures [11], [17], [18], [19].

In developing new measures, it is important that the assessment reflects aspects or constructs that are most important to the population of interest [20]. Qualitative research is advocated as the optimal approach to establish face and content validity of an assessment and ensure greater relevance of the content. Current views of health literacy encompass the larger concept of patient-centred care which is responsive to patients’ needs and values and encourages active participation [21]. Despite increased utilisation of informal sources of information external to the healthcare setting such as the internet, the patient–health professional interaction still represents a critical juncture for the exchange of health information [22], [23]. To support this exchange, abilities that are deemed important to patients in terms of seeking, understanding and utilising information, i.e., health literacy, need to be explored, understood and represented.

This study involved in-depth qualitative interviews to identify and understand what health literacy represents from the patient perspective and identify potential constructs for a broader measure of health literacy.