A study has been published that investigates patients’ use of medical terms in patient–patient online communication, where communication is not mediated by a health-care professional, and where patients communicate with each other without expert moderation or intervention.
The authors theorise that growing numbers of ‘e-patients’ use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums.
The paper aims to promote theoretical understandings of patients’ evolving health literacy, given that it may be positively affected by Internet use. The researchers argue that understanding developments in patients’ health literacy is important, as high health literacy is associated with greater patient confidence and greater patient participation in health. Also, the fact that health literacy is promoted through supportive social networks is very relevant for the online forum setting, where patients learn from each other.
The findings reveal that patients repeatedly use dictionary-defined medical terms like hematoma, papillary carcinoma thyroid cancer and tauopathies. The authors conclude that it would appear that many e-patients are familiar with these medical terms and are happy to use them actively in public forums. And that health-care professionals need to be able to assess this and tailor their use of terminology to the individual patient.
The findings also reveal that e-patients use a variety of medical terms without glossary or further explanation, on participatory media, which suggests that other patients’ knowledge of these terms or their ability to cope with them is assumed.
The authors highlight that e-patients’ health literacy could be ‘high’ in relation to knowledge of their own specific condition, without necessarily being high when dealing with wider health related topics. This is described in the study as ‘a deep vertical knowledge of a health issue that is relevant to the patient’. They suggest this should be addressed within definitions of health literacy.
The authors suggest an adaptive approach, where patients’ needs and abilities are established and addressed in a patient-centred way. Appropriate pitching of terms can avoid the potentially damaging effects of poor communication brought about by inappropriate (too complex or too simple) use of terms. Tailoring the terminological level to meet patients’ needs and expectations becomes all the more important as health-care professionals increasingly use written media such as email to communicate with patients.
You can read the full study here.
Fage-Butler, A. M. and Nisbeth Jensen, M. (2015), Medical terminology in online patient–patient communication: evidence of high health literacy?. Health Expectations. doi: 10.1111/hex.12395