Survey of consumer informatics for palliation and hospice care

Palliation in patient care is under-utilized in part because many patients have insufficient knowledge about this management option. Information technology can improve awareness by providing access to numerous sources of trustworthy information.

To estimate what a patient interested in palliation might find online, online resources were searched in July 2010, using terms relevant to palliation. PubMed was searched for publications relevant to discussed topics.

Search engines returned vast numbers of hits, and identifying trustworthy sites was difficult. Products judged as trustworthy were classified as information, decision tool, or extended interaction tool. Sites with useful educational material were relatively plentiful; decision guides or interactive tools were much rarer. Available consumer informatics did not address some terminal illnesses very well, and some subpopulations such as children, nor was there sufficient attention to literacy levels or principles of instructional design. Online or published information about usage numbers, effectiveness, and cost/benefit considerations was scant. Many sectors, including commercial, government, healthcare, research, and wellness/advocacy groups, have created consumer informatics for palliation.

Online information about palliation is available, although identifying trustworthy sources can be problematic. General information sites are relatively plentiful, but more tools for decision making, and interaction would increase value of web resources. More attention to literacy levels, instructional principles, and needs of special populations would improve products. Research to measure usage of such tools, ability to influence behavior, and cost/benefit issues is needed.