Ensuring full participation of people with disabilities in an era of telehealth

Valdez, Rupa S.; Rogers, Courtney C.; Claypool, Henry; Trieshmann, Lucy; Frye, Olivia; Wellbeloved-Stone, Claire A.; Kushalnagar, Poorna

doi:10.1093/jamia/ocaa297

Cited by 104 publications

(104 citation statements)

References 14 publications

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“…Office for National Statistics figures published in February showed that 6 of 10 people who died with covid-19 were disabled 10. In November 2020 a report funded by the US Agency for Healthcare Research and Quality and the National Institutes of Health11 warned that video calls made it harder for people with communication related disabilities such as deafness, blindness, and speech disabilities to access healthcare.…”

Section: Dangers Of Technophiliamentioning

confidence: 99%

Universal access to the digital NHS—but only if you have a smartphone

Armstrong¹

2021

BMJ

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As covid-19 accelerates the NHS's shift to a high tech future, Stephen Armstrong considers the patients being left behind by the digital gold rushStephen Armstrong freelance journalistThe pandemic has already substantially worsened existing health inequalities, says Helen Barnard, director of poverty research charity the Joseph Rowntree Foundation. "We came into covid-19 with the grim statistic that a baby girl born in the poorest part of the country could expect to live in good health for 51 years and poor health for 21, while a girl born in the richest part could live 71 healthy years and 15 years in poor health," she says."Under covid-19, better paid jobs were more likely to accommodate working from home, while poorly paid jobs were more likely to expose people to the virus at work. Rent arrears built up, creating stress, anxiety, and depression. This translated into a big picture of deaths from covid-19 in deprived communities, which was even worse for people in ethnic communities."Digital exclusion has made that worse: it's harder to access what support is out there if a parent has two kids trying to home school using the limited data on their smartphone." Accelerating NHS transformation"Digital government-the ongoing use of digital technology and techniques to transform how government delivers public services, provides information, and functions as an organisation-has played a key part in the [pandemic] response, ensuring the continuity of existing services and the creation of new ones," wrote the Institute for Government think tank last year. 1

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Section: Dangers Of Technophiliamentioning

confidence: 99%

Universal access to the digital NHS—but only if you have a smartphone

Armstrong¹

2021

BMJ

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Section: Introductionmentioning

confidence: 99%

“…Although these advancements can improve health outcomes for some, research suggests that they exacerbate health disparities for many, including those with disabilities [ 6 - 11 ]. The COVID-19 pandemic again exposed these inequities as it “ushered in a new era of telehealth” [ 11 ]. This has resulted in an increased need for medical visits provided through virtual options [ 11 , 12 ] and the dissemination of information through web-based sources [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

“…The COVID-19 pandemic again exposed these inequities as it “ushered in a new era of telehealth” [ 11 ]. This has resulted in an increased need for medical visits provided through virtual options [ 11 , 12 ] and the dissemination of information through web-based sources [ 13 ]. During the rapidly evolving health crisis, those with disabilities were left behind, with critical health information often not made available in other languages or access options [ 14 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

“…For example, the White House did not include American Sign Language (ASL) interpreters at their COVID-19 press briefings [ 14 ]. Telehealth options remained mostly inaccessible to those with disabilities or without reliable internet access [ 11 ]. Hence, a health infodemic was born, in which health information available on the internet often contained incorrect or outdated recommendations [ 13 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

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Using Gaze Tracking as a Research Tool in the Deaf Health Literacy and Access to Health Information Project: Protocol for a Multisite Mixed Methods Study and Preliminary Results

Champlin¹,

Cuculick²,

Hauser³

et al. 2021

JMIR Res Protoc

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Background Previous studies have identified the internet as a major source of health information. Reliable and accessible sources of web-based health information are critical for cultivating patient-centered care. However, the accessibility and use of web-based health information remains largely unknown for deaf individuals. We used gaze-tracking technology to understand the navigation and use of web-based health information by deaf adults who communicate with sign language and by hearing adults. Objective This paper discusses our protocol for implementing gaze-tracking technology in a study that included both deaf and hearing participants. We report the preliminary results and lessons learned from the implementation of the protocol. Methods We conducted gaze-tracking sessions with 450 deaf signers and 450 hearing participants as a part of a larger, multisite mixed methods research study. Then, we conducted qualitative elicitation interviews with a subsample of 21 deaf and 13 hearing participants, who engaged in a search task and reviewed their gaze recordings. To our knowledge, no study has implemented a similar research protocol to better understand the experiences of deaf adults. As such, we also examined research staff notes and observations from team meetings regarding the conduct of gaze-tracking data to delineate lessons learned and best practices for research protocols in this area. Results Findings from the implementation of this study protocol highlight the use of gaze technology with deaf participants. We developed additional protocol steps to minimize gaze disruption from either lipreading or communicating in sign language. For example, research assistants were often unable to maintain eye contact with participants while signing because of the need to simultaneously point at the computer monitor to provide instructions related to gaze study components, such as the calibration process. In addition to developing ways to effectively provide instructions in American Sign Language, a practice exercise was included in the gaze tracker session to familiarize participants with the computer and technology. The use of the playback feature permitted a deeper dialogue between researchers and participants, which we found vital for understanding the experiences of deaf participants. Conclusions On the basis of our experience using the study protocol through a large research project, incorporating gaze-tracking technology offers beneficial avenues for better understanding how individuals interact with health information. Gaze tracking can determine the type and placement of visual content that attracts attention from the viewers of diverse backgrounds, including deaf individuals. The lessons learned through this study will help future researchers in determining ideal study designs, such as suitable protocols and participant characteristics (eg, deaf signers), while including gaze trackers in their projects. This approach explored how different ways of presenting health information can affect or enable visual learners to engage and use health information effectively. International Registered Report Identifier (IRRID) RR1-10.2196/26708

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Telehealth follow‐up consultations for melanoma patients during the COVID‐19 pandemic: Patient and clinician satisfaction

Al‐Rikaby,

Sulaiman,

Thompson

et al. 2023

Cancer Medicine

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IntroductionThe COVID‐19 pandemic caused rapid implementation of telehealth for melanoma follow‐up care in Australia. This study explores Australian melanoma patients and clinicians' level of satisfaction with telehealth.MethodsA cross‐sectional study was conducted across three specialist melanoma centres in Sydney, Australia. Melanoma patients (all stages) and clinicians completed mixed methods surveys seeking socio‐demographic and clinical information and questionnaires to assess satisfaction with telehealth. Additionally, patients completed measures of quality of life, fear of cancer recurrence and trust in their oncologist. Patients and clinicians provided open‐ended responses to qualitative questions about their perceptions of telehealth.ResultsOne hundred and fifteen patients and 13 clinicians responded to surveys. Telephone was used by 109 (95%) patients and 11 (85%) clinicians. Fifty‐seven (50%) patients and nine (69%) clinicians preferred face‐to‐face consultations, 38 (33%) patients and 3 (23%) clinicians preferred a combination of face‐to‐face and telehealth consultations. Five (4%) patients and nil clinicians preferred telehealth consultations. Patients diagnosed with early‐stage melanoma, using telehealth for the first time, who have lower trust in their oncologist, and having higher care delivery, communication and supportive care concerns were likely to report lower satisfaction with telehealth. Open‐ended responses were consistent between patients and clinicians, who reported safety, convenience and improved access to care as major benefits, while identifying personal, interpersonal, clinical and system‐related disadvantages.DiscussionWhile telehealth has been widely implemented during COVID‐19, the benefits identified by patients and clinicians may extend past the pandemic. Telehealth may be considered for use in conjunction with face‐to‐face consultations to provide melanoma follow‐up care.

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Ensuring full participation of people with disabilities in an era of telehealth

Cited by 104 publications

References 14 publications

Universal access to the digital NHS—but only if you have a smartphone

Universal access to the digital NHS—but only if you have a smartphone

Using Gaze Tracking as a Research Tool in the Deaf Health Literacy and Access to Health Information Project: Protocol for a Multisite Mixed Methods Study and Preliminary Results

Telehealth follow‐up consultations for melanoma patients during the COVID‐19 pandemic: Patient and clinician satisfaction

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