European Conference on Information Literacy 2016, in Prague. Shaheen Majid presented a paper coauthored with Venkata Ratnadeep Suri, Hannah Trinity Javier, Yun Ke Chang; and Schubert Foo Exercising Critical Health Literacy Skills: A Qualitative Study of how Patients Make Sense of their Information Landscape.
The study (in Singapore) looked at how patients and their care givers find information, focusing on diabetes and cardiovascular diseases. Both of these are highly prevelant diseases, especially in Singapore. They wanted to find out why health literacy is important, what information patients and caregivers use, and what would help them. There was both qualitative and quantitative research and this was a presentation of the qualitative part. There were 13 focus groups (44 patients and 26 caregivers) and they used Grounded Theory to analyse the transcript data.
The participants agreed that they need health literacy because: interactions with doctors are very short (so people cannot get all the information from doctors and nurses); health information is broad and contradictory (so abilities in filtering and evaluating is needed to find the contextually relevant information). In terms of preference for finding information, participants want authoritative information. Doctors are seen as top of the hierarchy; after that come Singapore official and health sites, international official sites and certain news information (e.g. in special health supplements). Other people (family, friends and fellow sufferers from an illness) came after that. However, participants had quite simple ways of evaluating information e.g. has it got a lot of links or hits? what do my friends recommend?
The length of time that people have been suffering from an illness has an impact on their information behaviour - they may identify good information over time.
The participants said that they would LIKE the ability to question conflicting health information coming from authoritative sources (ie the conflicting information was particularly confusing when the contradictory sources were all authoritative). They also wanted to be able to find the connections between information on different illnesses (as they might have more than one illness - e.g. diabetes and heart problems). The last thing they identified was the ability to identify whether or not the information was relevant to their own particular context.
The speaker finished by saying that there remained the issue of how these needs could be met - who should act and how. He himself felt that having additional information filtered and provided by the doctor him/herself (so that the relevance and authority was stronger) would be helpful.