Superusers’ Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study

De Simoni, Anna; Shah, Anjali T.; Fulton, Olivia; Parkinson, Jasmine; Sheikh, Aziz; Panzarasa, Pietro; Pagliari, Claudia; Coulson, Neil S.; Griffiths, Chris J.

Abstract

Background:
Superusers, defined as the 1% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalysing engagement and influencing other users’ self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20-30 superusers active on a weekly basis among 3,345 users in the nation-wide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting to research these highly skilled individuals can be challenging and little is known about superusers.

Objective:
To explore superusers’ motivation to actively engage in OHCs, the difficulties they may face, and their interactions with healthcare professionals (HCPs).

Methods:
Asynchronous online structured interview study. Questions were developed based on OHCs literature, our previous studies and face-to-face discussions with superusers. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using qualitative content analysis.

Results:
17 superusers were recruited (15 patients with asthma, 2 carers), 15/17 were female; age range: 18-75y, were active in OHCs over 1-6 years, spending between 1-20 hours/week (median 2 hours) reading and 1-3 hours/week (median 0.75 hours) writing posts. 10/17 users participated in two or more OHCs. Superusers’ participation in OHCs was prompted by curiosity about asthma and its medical treatment and by availability of spare time when they were off-work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs, their interest in community members, and their knowledge of asthma and its self-management. Superusers were altruistic: financial or social recognition of superuser role was not important; their reward came from helping, and interacting with, others. According to the replies provided, they showed careful judgement to distinguish what can be dealt with through peer support/advice and what needs input from HCPs. Difficulties were encountered when dealing with: misunderstandings about asthma and its treatment; patients not seeking advice from HCPs when needed; “miracle cures” or dangerous ideas. 3/17 stated their HCPs were aware of their engagement with OHCs. All superusers thought HCPs should direct patients to OHCs, provided they are well-trusted and moderated. 9/17 felt HCPs themselves should take part in OHCs.

Conclusions:
Superusers from a UK-wide online community comprising thousands of patients with asthma and carers are altruistic, mostly female individuals who exhibit judgement about the complexity of coping with asthma and the limits of their advice. Future research should explore how to address their difficulties and unmet needs, their interactions with HCPs and the potential integration of OHCs in traditional healthcare. Clinical Trial: n/a

Citation

De Simoni, A., Shah, A. T., Fulton, O., Parkinson, J., Sheikh, A., Panzarasa, P., …Griffiths, C. J. Superusers’ Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study

• Other Type: Other
• Deposit Date: Jan 7, 2021
• DOI: https://doi.org/10.2196/preprints.18185
• Public URL: https://nottingham-repository.worktribe.com/output/4736976
• Related Public URLs: https://preprints.jmir.org/preprint/18185
• Additional Information: JMIR preprint. Final article can be found at https://nottingham-repository.worktribe.com/output/4736986