Principal Findings
Our findings demonstrated that online ethnography has great potential in the field of chronic disease research and has yielded beneficial outcomes in many chronic disease studies. This method has also attracted more attention from scholars in the field of chronic diseases. Most of the included articles in this scoping review were conducted from 2009 onward, and the number of included studies gradually increased with time, which may indicate growing interest in this area of research, especially since 2019. The included articles covered various chronic conditions, such as mental illness, neurological disorders, common chronic diseases, cancer, rheumatic immune system diseases, autoimmune disorders, hereditary diseases, female reproductive diseases, and HIV. These articles showed that online ethnography could highlight the patients’ experiences with disease and demonstrated new insights into improving medical practice from a patient-centered perspective. These diseases are characterized by long-term physical health conditions and the high mental health needs of the patients. In our scoping review, youth with mental illnesses and women with reproductive diseases were the most concerned population, which is consistent with Bour et al’s [56] study. These categories of patients are among the most stigmatized, marginalized, and vulnerable members of society and suffer from discrimination in many areas of their daily life. Online forums and social media can be a user-friendly environment where individuals can normalize their illness, assert their voice and identity with each other by validating shared experience with peers, and form social ties with a broad audience [57]. HIV patients and youth with mental illness affected by COVID-19 were also discussed in our study [44,49]. COVID-19 possibly shifts from an acute to chronic disease and also causes political controversy [58-60], while HIV has long been recognized as a health and political challenge [60,61]. Since online ethnography is currently a well-established method, which involves the social, cultural, and structural dimension of a given phenomenon [44], it is particularly well suited to dealing with personally or politically sensitive topics or illegal acts in online communities [19].
Online ethnography showed great contribution toward understanding how online users acquired health information, emotional support, and interaction with health providers, which provides thoughts on how to improve internet-based medical practices. First, the data showed that online users possibly sought health information and emotional support from peers instead of health care professionals. This could be because people tend to trust others who have similar challenges more than figures of authority from business, government, or mass media. However, there exists a controversy between the untrusted face-to-face patient-provider relationship and online support needs from health care professionals. Second, online ethnography can investigate the online health care pathways among chronically ill patients, which include individual and collective self-management and empowerment processes [53]. In addition, online ethnography can be used to evaluate social and experiential aspects of health technologies, such as deep brain stimulation and the Open Artificial Pancreas System (OpenAPS) do-it-yourself artificial pancreas technology [36,45,62], which could promote offline promotion of new medical technologies. In summary, online ethnography is a bridge that connects online and offline cultures, which affect offline-online social and medical practices among people with chronic conditions. It is also noteworthy that most of the studies were conducted in Western cultures. Therefore, there is need for research from other countries.
We also highlighted some characteristics and issues regarding the methodology and implementation process which should be dealt with. We identified online forums as the main data source, followed by Facebook, but the majority of the studies did not describe the immersion process. These data sources of online ethnography are broad and constantly evolving. Keim-Malpass et al [31] searched for blogs that explored the experience of women with cancer in the past, and now the use of online health forums for data collection for online ethnography is steadily increasing. This is because online forums can provide a rich source of primary naturalistic data about the perspectives and experiences of users with a particular health issue and can offer additional insights compared with traditional interviews [63,64]. Our analysis showed that Facebook has many users, and thus a large amount of data can potentially be harnessed. Although Facebook users’ activity consists of creating written posts, the potential use of text data for research is enormous, and thus online ethnographers are increasingly using it for research [49,65]. Instagram is pictorial, Reddit is text-based, and Twitter comprises short posts, all of which can facilitate sustained discussions where people share their in-depth experiences. Additionally, YouTube and video websites are public video-sharing platforms which may serve as important avenues to gain an understanding of people’s viewpoints [66-68]. Online ethnographers could choose one or more platforms as data sources depending on the research objectives. Moreover, using more than 1 research method was associated with superior outcomes compared to using a single study method. A combination of 2 methods can compare and explore deeper experiences and value perspectives [69]. For example, Lee et al [34] gathered narratives through interviews to circumvent the limitation of online ethnography where some women would keep silent or express false feelings in the infertility forum. The research methods for online ethnography are constantly evolving, and now it can stand alone or be combined with other research methods including offline interactions [70]. Furthermore, the majority of the studies did not describe the immersion process, a component that should be considered in future studies. Theoretically, the main researchers need to be immersed in the online culture of the targeted group prior to sampling. In our scoping review, only 8 articles described the immersion process; however, developing competencies as an online ethnographic fieldworker (immersive depth, prolonged engagement, researcher identification, and persistent conversations) is a key strategy for learning socially relevant events [71]. Reading relevant posts for several weeks or months, engaging researchers who are familiar with a given online environment, and being involved in the online community are 3 approaches to achieve a high quality of immersion. In addition, various qualitative data analysis methods were chosen based on specific research questions in the articles included, while quantitative methods need further exploration. Researchers believe that thematic analysis, lexical analysis, content analysis, grounded theory, narrative analysis, and “netnography” can be selected according to the research purpose [46,48]. In the future, there is a possibility that quantitative analysis could be combined with netnography [72]. Online ethnographers should take advantage of online software in data analysis under the condition that they follow the principles of ethnography.
We also highlighted 5 aspects of ethical issues and relevant limitations in the application processes of online ethnography for people with chronic conditions. First, the majority of our included studies were conducted using public data to avoid ethical controversy, which meant that individuals who had posted public messages did not have a reasonable expectation of privacy. However, such public data could lead to research bias, as passive patients with chronic conditions could have contrary opinions. Moreover, administrators of online communities sometimes would remove messages that were sad, shocking, or in violation of the group’s code of conduct, and, therefore, researchers could not capture a true and meaningful experience. Second, although it seemed justifiable to waive informed consent for observational research in a public space in the past [73], Hetland et al [74] recently suggested that informed consent was one way that ethnographers could handle potential risks in internet research. In our study, we discovered that some investigators had posted announcements or contacted users by email to protect users’ rights, which could be one form of balancing the issue of informed consent. Third, to protect the identities of a vulnerable population, all names were removed and post titles or specific demographic characteristics were not reported. We further recommend concealing discriminative descriptions because search engines are often capable of finding statements used in research reports, making it difficult to conceal certain data in certain avenues. Lastly, our finding showed that there was no consensus research among various national ethical committees regarding online ethnography [75]. Based on the literature, it was acknowledged that the ethics surrounding internet research is complex and multifactorial because internet research is a multidisciplinary project and has different types of environments [76,77]. Therefore, we suggest that online ethnographers should follow guidelines of local ethical committees. In conclusion, we recommend using public and private data as well as preserving patient anonymity, privacy, and confidentiality through removal of identified information when performing online ethnography among people with chronic conditions [78].