Collective empowerment of an online patient community: conceptualizing process dynamics using a multi-method qualitative approach

Abstract

Background Online communities for patients with chronic conditions are becoming healthcare providers. They gather to offer support and services, and to become a collective oppositional force. We found, however, that these communities and their collective power are rarely studied in the health services management literature, which focuses more on the empowering practices of healthcare professionals or patient participation. The aim of this study is thus to build a better understanding of the nature of patients’ collective empowerment and the processes underlying it. We carry out two exploratory qualitative studies to examine the motivations that drive chronically ill patients to engage in an individual and then collective empowerment process. Methods The first qualitative study involves four semi-structured interviews with experts. The second is a netnographic study carried out over a year on an online forum for people with thyroid disease. The latter has two phases: an immersion phase followed by one that traces the path of 21 forum members from their first message to their recognition as active members or even forum moderators. The data are analyzed through thematic and lexical content analyses. Results We were able to identify the different stages of the collective patient empowerment process and the criteria for progression though this process. Specifically, the first study sheds light on the unmet individual and collective needs of the patients. The second emphasizes the essential role of active contributors and their impact on the growth and power of the community. Conclusions This study looks at patient communities as a self-contained system and identifies the stages of collective empowerment that match the organization’s declared priorities: community, collaborative, productive, and societal. These results should help health professionals better take these online communities into account in patient care, improving their practices, and carrying out their policies. We call for future research into collective empowerment and its influence on patient behavior, the transformation of healthcare institutions, and the health services market.

Online Ethnography for People With Chronic Conditions: Scoping Review

“…Most studies concentrated more on exploring the experience among the targeted population. Table 2 displays the distribution of articles by the continent of publication: 40.7% (11/27) of the articles [ 24 , 26 , 30 - 38 ] were from the United States, 29.6% (8/27) from England [ 25 , 39 - 44 ], 14.8% (4/27) from France [ 45 - 47 ], 7.4% (2/27) from Brazil [ 48 , 49 ], 3.7% (1/27) from Austria [ 50 ], and 3.7% (1/27) from Canada [ 51 ].…”

“…On the basis of the report of the National Health Council [ 55 ], we classified the included chronic conditions into mental illness [ 24 , 41 , 44 , 51 ], female reproductive diseases [ 25 , 34 , 38 , 42 ], neurological disorders [ 40 , 45 , 46 , 50 ], cancer [ 31 , 32 , 39 , 53 ], rheumatic immune system diseases [ 33 , 37 , 43 ], common chronic diseases [ 26 , 36 , 48 ], autoimmune disorders [ 30 , 35 ], hereditary diseases [ 54 ], HIV [ 49 ], and thyroid disease [ 47 ]. Table 3 displays the distribution of articles by the domains of chronic conditions.…”

“…In our study, 4 online ethnographers collected data from more than 1 platform [25,26,38,41] (4/27, 14.8%), and most of them collected data from just 1 source. Among the retrieved articles, most data (10/27, 37.0%) were collected from online forums [33,34,40,[43][44][45][46][47]50,53], 18.5% (5/27) were from Facebook [30], 11.1% (3/27) were from websites [30,39,54], 14.08% ((4/27) were from multisources, 7.4% (2/27) were from blogs [31,32], 3.7% (1/27) was from Instagram [37], 3.7% (1/27) was from Twitter [36], and 3.7% (1/27) was from Youtube [24].…”

“…Only 11.1% (3/27) of the articles did not mention any issues on ethics [26,45,50]. In general, there were 5 ethical issues in the included studies, which included public data [24,25,[30][31][32][33][35][36][37]40,41,44,46,48,51,53], informed consent [38][39][40]42,43,47,49,51], privacy and confidentiality [31,32,40,41,44,46,47], naming [24,31,[39][40][41]44,46,47,51,54], and legal consideration [24,25,[30][31][32][33]…”

“…the distribution of articles by the continent of publication: 40.7% (11/27) of the articles[24,26,[30][31][32][33][34][35][36][37][38] were from the United States, 29.6% (8/27) from England [25,39-44], 14.8% (4/27) from France[45][46][47], 7.4% (2/27) from Brazil[48,49], 3.7% (1/27) from Austria[50], and 3.7% (1/27) from Canada[51].…”