Engaging the disability community in informatics research: rationales and practical steps

Valdez, Rupa S.; Lyon, Sophie E; Wellbeloved-Stone, Claire A.; Collins, Mary; Rogers, Courtney C.; Cantin-Garside, Kristine D.; Fortes, Diogo Gonclaves; Kim, Chung; Desai, Shaalini S; Keim‐Malpass, Jessica; Kushalnagar, Raja

doi:10.1093/jamia/ocac136

Cited by 11 publications

(3 citation statements)

References 47 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This may reflect a high level of organization and advocacy among the PWD community, as well as a growing movement for disability justice focusing on health care-related institutions and policies. Recent work in this area has advocated for the involvement of PWD in disaster planning to address the needs of PWD better, 74 more accurate data collection about PWD to quantify COVID-19-related disparities better and disparity reduction strategies, 75 engagement with the disability community on the development of informatics-based solutions for health disparity reduction, 76 explicit efforts to identify and eliminate structural ableism within health care including medical rationing, 77 and rethinking of the field of bioethics’ reflexive disregard for PWD. 78 …”

Section: Discussionmentioning

confidence: 99%

The lived experience of people with disabilities during the COVID-19 pandemic on Twitter: Content analysis

et al. 2023

View full text Add to dashboard Cite

Objective People with disabilities (PWDs) are at greater risk of COVID-19 infection, complications, and death, and experience more difficulty accessing care. We analyzed Twitter tweets to identify important topics and investigate health policies’ effects on PWDs. Methods Twitter's application programming interface was used to access its public COVID-19 stream. English-language tweets from January 2020 to January 2022 containing a combination of keywords related to COVID-19, disability, discrimination, and inequity were collected and refined to exclude duplicates, replies, and retweets. The remaining tweets were analyzed for user demographics, content, and long-term availability. Results The collection yielded 94,814 tweets from 43,296 accounts. During the observation period, 1068 (2.5%) accounts were suspended and 1088 (2.5%) accounts were deleted. Account suspension and deletion among verified users tweeting about COVID-19 and disability were 0.13% and 0.3%, respectively. Emotions were similar among active, suspended, and deleted users, with general negative and positive emotions most common followed by sadness, trust, anticipation, and anger. The overall average sentiment for the tweets was negative. Ten of the 12 topics identified (96.8%) related to pandemic effects on PWDs; “politics that rejects and leaves the disabled, elderly, and children behind” (48.3%) and “efforts to support PWDs in the COVID crisis” (31.8%) were most common. The sample of tweets by organizations (43.9%) was higher for this topic than for other COVID-19-related topics the authors have investigated. Conclusions The primary discussion addressed how pandemic politics and policies disadvantage PWDs, older adults, and children, and secondarily expressed support for these populations. The increased level of Twitter use by organizations suggests a higher level of organization and advocacy within the disability community than in other groups. Twitter may facilitate recognition of increased harm to or discrimination against specific populations such as people living with disability during national health events.

show abstract

Section: Discussionmentioning

confidence: 99%

The lived experience of people with disabilities during the COVID-19 pandemic on Twitter: Content analysis

et al. 2023

View full text Add to dashboard Cite

show abstract

“…Identity-based barriers to engagement were seldom mentioned by partners in the present study. However, future research should investigate how to meaningfully engage partners with physical disabilities, as certain partners with disabilities may uniquely benefit from the remote setting (remote PD requires less mobility) while others may find it more complicated (remote PD is often dependent on visual media) [56]. PD.…”

Section: Maximizing Community Partner Outcomesmentioning

confidence: 99%

Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers (Preprint)

Jolliff,

Holden,

Valdez

et al. 2024

Preprint

View full text Add to dashboard Cite

BACKGROUND Digital health interventions are a promising method for delivering timely support to under-resourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in their design through Participatory design (PD). Recent years have seen a shift towards conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers. OBJECTIVE The objective of the present study was to 1) understand the context, quality, and outcomes of family caregivers’ engagement experiences in remote PD, and 2) learn which aspects of the observed PD approach facilitated engagement or need to be improved going forward. METHODS We analyzed qualitative and quantitative data from evaluation and reflection surveys completed by research partners and community partners (family caregivers) across four separate remote PD studies conducted between 2021-2023. Each study focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4-5 design sessions over the course of 6 months. After each design session, community partners completed an evaluation survey. Additionally, after one of four studies, research and community partners completed a reflective survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while thematic analysis was used to understand all qualitative evaluation and reflection survey data. RESULTS The average effectiveness and satisfaction ratings for each session ranged between 4 and 5 on a five-point scale. Qualitative data relating to the Engagement Context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of Engagement Quality, relationship building and co-learning; satisfaction with pre-work, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Data pertaining to Partner Outcomes indicated that partners felt ongoing interest in the project after its conclusion, felt gratitude for participation, and gained a sense of meaning and self- esteem from engaging in remote PD. CONCLUSIONS These results point to high satisfaction with remote PD processes and few losses specific to remote PD. Results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach to be used, and their roles within the project. Throughout the design process, virtual tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power sharing. Emphasis should be placed on increasing psychosocial benefits of engagement (e.g., sense of community, purpose) and increasing opportunities to participate in disseminating findings and future studies.

show abstract

“…This agency includes customizable features related to what types of data are shared and to whom as well as how this data can be used for research. Lastly, these technologies also need to be designed to be accessible for all disability types and responsive to intersectional identities ( 28 , 41 ).…”

Section: Ethical Considerationsmentioning

confidence: 99%

Designing mobile health to align with the social determinants of health

Rogers

Jang

Tidwell

et al. 2023

Front. Digit. Health

View full text Add to dashboard Cite

The maternal health crisis in the United States is becoming increasingly worse, with disparities continuing to escalate among marginalized populations. mHealth can contribute to addressing the Social Determinants of Health (SDOH) that produce inequities in maternal morbidity and mortality. Reducing inequities through mHealth can be achieved by designing these technologies to align with SDOH. As mHealth developed to support maternal health has primarily supported the extension of clinical care, there is an opportunity to integrate frameworks and methods from human factors/ergonomics and public health to produce thorough comprehension of SDOH through intentional partnerships with marginalized populations. Potential for this opportunity is presented through a case study derived from a community-based participatory research process focused on transportation access to maternal health services. Through multi-faceted, interdisciplinary, and community-based approaches to designing mHealth that attends to the systemic factors that generate and escalate inequities, improvements in the maternal health crisis could be realized.

show abstract

Engaging the disability community in informatics research: rationales and practical steps

Cited by 11 publications

References 47 publications

The lived experience of people with disabilities during the COVID-19 pandemic on Twitter: Content analysis

The lived experience of people with disabilities during the COVID-19 pandemic on Twitter: Content analysis

Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers (Preprint)

Designing mobile health to align with the social determinants of health

Contact Info

Product

Resources

About