Investigating barriers to accessing online palliative care information

Health information for health consumers and health professionals is now readily available on the web. The growth in the numbers of Internet users, and the volume of content held on the web, demonstrates its increasing role in contemporary society. Health services and organisations actively use the web as a medium to enable ready access to, and facilitate the dissemination of, health information. In palliative care, online resources can inform patients and their families as well as support health professionals providing care to these patients. However, availability of online information does not necessarily equate to access and use.

The emerging field of Knowledge Translation looks at the processes that encourage use of health care evidence in practice. The Knowledge to Action (KTA) cycle outlines a series of stages for developing evidence and information resources to increase the likelihood of its use in clinical practice and health care. Barriers analysis is one of these stages. Barriers analysis aims to identify and assess factors preventing or slowing the uptake and use of health evidence. For resources delivered through the web, there can be specific barriers that relate to the nature of the medium as well as to the characteristics and circumstances of intended and actual users. Eysenbach has described a conceptual model of barriers, which categorises the types of barriers that may need to be considered in ensuring that web-based health information is “accessible”.

The aim of this PhD research was to identify and characterise barriers that may be experienced by health consumers and health professionals in identifying, accessing and using online palliative care information. The five studies explored possible barriers relating to the characteristics of intended users of an online palliative care knowledge resource as well as investigating elements associated with presentation of health information and issues relating to search and retrieval. The studies reflected the following barriers in Eysenbach’s model - user factors, physical accessibility, “findability” and reading level.

Understanding whether intended users have physical access to, as well as the interest and competence to engage with, web-based resources is fundamental to the development of appropriate resources. Three studies investigated elements associated with user characteristics and attitudes to web-based palliative care information. Two of these three studies focused on health professionals. These aspects could influence how content is presented, approaches to navigation as well as avenues for promotion of the resource.

As the use of information is dependent on it being able to be found, understanding how users come to a website and how they search for information is important. A study using web-log data investigated patterns of referral and search term usage. Findings could be used to enhance the efficiency of search and retrieval, and improve page tagging and website linkages.

The final study looked at readability, which is closely linked with health literacy concerns for health consumers. Reviewing existing palliative care web content could inform readability standards for online resources to improve its accessibility.

The findings of these studies informed the development of a palliative care information website, www.caresearch.com.au.