Crowdsourcing health literacy: The case of an online community

Rubenstein, Ellen L.

doi:10.1002/meet.14505001119

Cited by 10 publications

(14 citation statements)

References 22 publications

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“…Websites that allow interaction and crowdsourcing the collective wisdom of others [3] can help patients manage their own health by providing tools for health promotion and disease self-care, decision support, support for behavior change, and access to online communities [4]. Online communities can support health literacy by crowdsourcing information to support medical decision making [5,6]. Although many patients are using online information and communities to improve health [7] and engagement, how online activity affects health outcomes is poorly understood, and measuring meaningful eHealth engagement can be difficult [8].…”

Section: Introductionmentioning

confidence: 99%

Effect of Diabetes Online Community Engagement on Health Indicators: Cross-Sectional Study

Litchman¹,

Edelman²,

Donaldson³

2018

JMIR Diabetes

126

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BackgroundSuccessful diabetes management requires ongoing lifelong self-care and can require that individuals with diabetes become experts in translating care recommendations into real-life day-to-day diabetes self-care strategies. The diabetes online community comprises multiple websites that include social media sites, blogs, and discussion groups for people with diabetes to chat and exchange information. Online communities can provide disease-specific practical advice and emotional support, allow users to share experiences, and encourage self-advocacy and patient empowerment. However, there has been little research about whether diabetes online community use is associated with better diabetes self-care or quality of life.ObjectiveThe aim of this study was to survey adults with diabetes who participated in the diabetes online community to better understand and describe who is using the diabetes online community, how they are using it, and whether the use of the diabetes online community was associated with health indicators.MethodsWe recruited adults diagnosed with diabetes who used at least one of 4 different diabetes-related online communities to complete an online survey. Participants’ demographics, reported glycated hemoglobin (HbA1c), health-related quality of life (SF-12v2), level of diabetes self-care (Self-Care Inventory-Revised), and diabetes online community use (level of intensity and engagement) were collected. We examined the relationships between demographics, diabetes online community use, and health indicators (health-related quality of life, self-care, and HbA1c levels). We used binary logistic regression to determine the extent to which diabetes online community use predicted an HbA1c <7% or ≥7% after controlling statistically for other variables in the model.ResultsA total of 183 adults participated in this study. Participants were mostly female (71.6%, 131/183), white (95.1%, 174/183), US citizens (82.5%, 151/183), had type 1 diabetes (69.7%, 129/183), with a mean age of 44.7 years (SD 14) and diabetes duration of 18.2 years (SD 14.6). Participants had higher diabetes self-care (P<.001, mean 72.4, SD 12.1) and better health-related quality of life (physical component summary P<.001, mean 64.8, SD 19; mental component summary P<.001, mean 66.6, SD 21.6) when compared with norms for diabetes. Diabetes online community engagement was a strong predictor of A1c, reducing the odds of having an A1c ≥7% by 33.8% for every point increase in diabetes online community engagement (0-5). Our data also indicated that study participants are oftentimes (67.2%, 123/183) not informing their healthcare providers about their diabetes online community use even though most (91.2%, 161/181) are seeing their healthcare provider on a regular basis.ConclusionsOur results suggest that individuals highly engaged with diabetes online community are more likely to have better glycemic levels compared with those with lower engagement. Furthermore, diabetes online community users have high health-related quality of life and ...

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Section: Introductionmentioning

confidence: 99%

Effect of Diabetes Online Community Engagement on Health Indicators: Cross-Sectional Study

Litchman¹,

Edelman²,

Donaldson³

2018

JMIR Diabetes

126

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“…24 Previous work has suggested online health forums help support people to better understand health information. 25 As a health information source, the internet is here to…”

Section: Discussionmentioning

confidence: 99%

Understanding the use of heart failure online health forums: a qualitative study

Farnood

Johnston

Mair

2021

European Journal of Cardiovascular Nursing

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Aims Heart failure is a major public health challenge and is described as an epidemic. Many people resort to the internet as a source of health information and online health forums have become an increasingly common way to obtain information and support regarding health-related issues. This study aims to explore what information people concerned about heart failure seek from online health forums, and how this shapes decision-making, trust, and interactions with healthcare professionals. Methods and results Widely available internet search engines (Google, Yahoo, and Bing) were used to identify online health forums, accessed by people seeking information on heart failure. Comments posted between 2016 and 2019 were screened, downloaded, and analysed thematically. Normalization Process Theory provided the underlying conceptual lens to inform analysis. Ten online health forums were identified, and 204 individual posts analysed. Three themes were identified [(information and support needs; online diagnosis; and relationship with healthcare professionals (HCPs)]. The most common purpose for using online health forums was to plug information/knowledge gaps surrounding diagnosis or treatments (e.g. discussion of results, medication/health insurance queries). They were used as a tool to aid decision-making regarding, (i) whether to seek further medical attention and (ii) lifestyle choices, medications, and other advice surrounding concerns. Negative experiences with HCPs were discussed, and sometimes online health forums appeared to promote distrust with HCPs. Conclusion Online health forums offer a supportive platform and help fill key informational gaps. However, online forums may amplify distrust with HCPs.

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“…This form of crowdsourcing has proven to receive better quality feedback for class projects from classroom peers [16,80]. Moreover, researchers have discussed the efcacy of crowdsourcing peer-based altruistic support in critical contexts, such as to reduce depression and to promote engagement [64], for generating behavior change plans [1,17], to exchange health information [71], etc. Although friendsourced answers often contain personal or contextual information that improves their quality, in some cases people do not consider social network as an appropriate venue for asking questions due to high perceived social costs, limiting the potential beneft of friendsourcing [6,12,75].…”

Section: Community-situated Crowdsourcing: Generic Platforms Versus Targeted Online Communitiesmentioning

confidence: 99%

Comparing Generic and Community-Situated Crowdsourcing for Data Validation in the Context of Recovery from Substance Use Disorders

Rubya

Numainville

Yarosh

2021

Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems

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Targeting the right group of workers for crowdsourcing often achieves better quality results. One unique example of targeted crowdsourcing is seeking community-situated workers whose familiarity with the background and the norms of a particular group can help produce better outcome or accuracy. These communitysituated crowd workers can be recruited in diferent ways from generic online crowdsourcing platforms or from online recovery communities. We evaluate three diferent approaches to recruit generic and community-situated crowd in terms of the time and the cost of recruitment, and the accuracy of task completion. We consider the context of Alcoholics Anonymous (AA), the largest peer support group for recovering alcoholics, and the task of identifying and validating AA meeting information. We discuss the benefts and trade-ofs of recruiting paid vs. unpaid community-situated workers and provide implications for future research in the recovery context and relevant domains of HCI, and for the design of crowdsourcing ICT systems. CCS CONCEPTS• Human-centered computing → Empirical studies in collaborative and social computing.

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Crowdsourcing health literacy: The case of an online community

Cited by 10 publications

References 22 publications

Effect of Diabetes Online Community Engagement on Health Indicators: Cross-Sectional Study

Effect of Diabetes Online Community Engagement on Health Indicators: Cross-Sectional Study

Understanding the use of heart failure online health forums: a qualitative study

Comparing Generic and Community-Situated Crowdsourcing for Data Validation in the Context of Recovery from Substance Use Disorders

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