Background: The content that cancer patients and their relatives (ie, posters) share in online cancer communities has been researched in various ways. In the past decade, researchers have used automated analysis methods in addition to manual coding methods. Patients, providers, researchers, and health care professionals can learn from experienced patients, provided that their experience is findable.
Objective: The aim of this study was to systematically review all relevant literature that analyzes user-generated content shared within online cancer communities. We reviewed the quality of available research and the kind of content that posters share with each other on the internet.
Methods: A computerized literature search was performed via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect. The last search was conducted in July 2017. Papers were selected if they included the following terms: (cancer patient) and (support group or health communities) and (online or internet). We selected 27 papers and then subjected them to a 14-item quality checklist independently scored by 2 investigators.
Results: The methodological quality of the selected studies varied: 16 were of high quality and 11 were of adequate quality. Of those 27 studies, 15 were manually coded, 7 automated, and 5 used a combination of methods. The best results can be seen in the papers that combined both analytical methods. The number of analyzed posts ranged from 200 to 1,500,000; the number of analyzed posters ranged from 75 to 90,000. The studies analyzing large numbers of posts mainly related to breast cancer, whereas those analyzing small numbers were related to other types of cancers. A total of 12 studies involved some or entirely automatic analysis of the user-generated content. All the authors referred to two main content categories: informational support and emotional support. In all, 15 studies reported only on the content, 6 studies explicitly reported on content and social aspects, and 6 studies focused on emotional changes.
Conclusions: In the future, increasing amounts of user-generated content will become available on the internet. The results of content analysis, especially of the larger studies, give detailed insights into patients' concerns and worries, which can then be used to improve cancer care. To make the results of such analyses as usable as possible, automatic content analysis methods will need to be improved through interdisciplinary collaboration.
Keywords: cancer; internet; support groups; survivors.
©Mies C van Eenbergen, Lonneke V van de Poll-Franse, Emiel Krahmer, Suzan Verberne, Floortje Mols. Originally published in JMIR Cancer (http://cancer.jmir.org), 03.04.2018.