scholarly journals 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 (Preprint)

2020 ◽  
Author(s):  
Sara Champlin ◽  
Jessica Cuculick ◽  
Peter C Hauser ◽  
Kelley Wyse ◽  
Michael M McKee

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 RR1-10.2196/26708

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Laura Jadwin-Cakmak ◽  
Sari L. Reisner ◽  
Jaclyn M. W. Hughto ◽  
Liz Salomon ◽  
Miguel Martinez ◽  
...  

Abstract Background In the U.S., transgender and gender diverse (TGD) populations face structural, interpersonal, and individual barriers to healthcare. Less is known, however, about the HIV prevention and treatment experiences of TGD youth in the U.S. The current study was developed to fill this research gap. Methods This article describes the research protocol for a multi-site, U.S.-based mixed-methods study that sought to identify the multi-level facilitators and barriers that influence participation of TGD youth in various stages of the HIV prevention (e.g., pre-exposure prophylaxis uptake) and care continua. A sample of diverse TGD youth ages 16–24 was recruited from 14 U.S. sites. TGD youth participants completed a one-time, in-person visit that included an informed consent process, computer-based quantitative survey, and in-depth qualitative interview assessing experiences accessing HIV prevention and/or care services. Providers serving TGD youth were recruited from the same 14 sites and completed a one-time visit via phone that included informed consent, demographic questionnaire, and in-depth qualitative interview assessing their experiences providing HIV prevention or treatment services to TGD youth. Results Overall, 186 TGD youth ages 16–24 and 59 providers serving TGD youth were recruited and enrolled from across the 14 U.S. sites. TGD youth participants had a mean age of 20.69; 77.3% youth of color; 59.7% trans-feminine; 15.5% trans-masculine; 24.9% non-binary; 53.6% family income under poverty level. Providers included medical and mental health providers as well as case manager/care coordinators, HIV test counselors, and health educators/outreach workers. Providers were 81.3% cisgender and 30.5% people of color. Successes with community-engagement strategies and gender-affirming research methods are reported. Conclusions This study addresses critical gaps in current knowledge about the HIV prevention and care experiences of TGD youth. Findings have implications for the development of HIV interventions across levels to support the health and well-being of TGD youth. Future research is warranted to replicate and expand on lessons learned regarding recruitment and engagement of communities of TGD youth, including longitudinal designs to assess engagement across their developmental stages. Lessons learned working with TGD youth through developing and implementing the study protocol are shared. Trial registration Registered on ClinicalTrials.gov on 05/20/2015 (NCT02449629).


10.2196/14889 ◽  
2019 ◽  
Vol 8 (10) ◽  
pp. e14889 ◽  
Author(s):  
Michael M McKee ◽  
Peter C Hauser ◽  
Sara Champlin ◽  
Michael Paasche-Orlow ◽  
Kelley Wyse ◽  
...  

Background Deaf American Sign Language (ASL) users often struggle with limited health literacy compared with their hearing peers. However, the mechanisms driving limited health literacy and how this may impact access to and understanding of health information for Deaf individuals have not been determined. Deaf individuals are more likely than hearing individuals to use the internet, yet they continue to report significant barriers to health information. This study presents an opportunity to identify key targets that impact information access for a largely marginalized population. Objective This study aims to elucidate the role of information marginalization on health literacy in Deaf ASL users and to better understand the mechanisms of health literacy in this population for the purpose of identifying viable targets for future health literacy interventions. Methods This is an exploratory mixed methods study to identify predictors and moderators of health literacy in the Deaf population. These predictors of health literacy will be used to inform the second step that qualitatively explains the findings, including how Deaf individuals access and understand Web-based health information. Multiple interviewer- and computer-based instruments underwent translation and adaptation, from English to ASL, to make them accessible for the Deaf participants in our study. A planned sample of 450 Deaf ASL users and 450 hearing native English speakers, aged 18 to 70 years, will be recruited from 3 partnering sites: Rochester, NY; Flint, MI; and Chicago, IL. These individuals will participate in a single data collection visit. A subset of participants (approximately 30) with key characteristics of interest will be invited for a second data collection visit to observe and inquire more about their ability to directly access, navigate, and comprehend Web-based health information. The study will help assess how the ways health literacy and information are visualized may differ between Deaf individuals and hearing individuals. The study will also survey participants’ ownership and use of computer and mobile devices and their level of Web-based information use, including health information. Results Adaptation and translation of protocols and instruments have been completed and are now in use for the study. Recruitment is underway and will continue until late 2020. Results from this study will be used to provide a guide on how to structure Web-based health information in a way that maximizes accessibility and improves health literacy for Deaf individuals. Conclusions The results from this mixed methods proposal will advance what is known about health literacy and health information accessibility for Deaf individuals. This innovative study will generate rich data on how to formulate health information and health literacy interventions more accurately to take advantage of visual learning skills. International Registered Report Identifier (IRRID) PRR1-10.2196/14889


2019 ◽  
Author(s):  
Jeffrey C Greene ◽  
Jolie N Haun ◽  
Dustin D French ◽  
Susan L Chambers ◽  
Robert H Roswell

BACKGROUND The association between health literacy and health care costs, particularly for hospitalizations and emergency room services, has been previously observed. Health information interventions aimed at addressing the negative impacts of inadequate health literacy are needed. The MedEncentive Mutual Accountability and Information Therapy (MAIT) Program is a Web-based system designed to improve health and lower costs by aligning patient-doctor incentives. OBJECTIVE In this mixed methods study of a Web-based patient-doctor aligned-incentive, information therapy program conducted in an 1800-member employee health plan, we aimed to (1) determine the program’s quantitative impact on hospitalization and emergency room utilization and costs, and (2) assess survey responses about the program’s perceived value. METHODS We used a mixed methods, single within-group, pre-post, descriptive study design. We analyzed quantitative data using pre-post mean utilization and cost differences and summarized the data using descriptive statistics. We used open-ended electronic survey items to collect descriptive data and analyzed them using thematic content analysis. RESULTS Hospitalizations and emergency room visits per 1000 decreased 32% (26.5/82.4) and 14% (31.3/219.9), respectively, after we implemented the program in 2015-2017, relative to 2013-2014. Correspondingly, the plan’s annual per capita expenditures declined US $675 (95% CI US $470-865), or 10.8% ($675/$6260), after program implementation in 2015-2017 (US $5585 in 2013-2014 dollars), relative to the baseline years of 2013-2014 (US $6260; <italic>P</italic>&lt;.05). Qualitative findings suggested that respondents valued the program, benefiting from its educational and motivational aspects to better self-manage their health. CONCLUSIONS Analyses suggested that the reported reductions in hospitalizations, emergency room visits, and costs were associated with the program. Qualitative findings indicated that targeted users perceived value in participating in the MAIT Program. Further research with controls is needed to confirm these outcomes and more completely understand the health improvement and cost-containment capabilities of this Web-based health information, patient-doctor, aligned-incentive program.


10.2196/14772 ◽  
2019 ◽  
Vol 21 (10) ◽  
pp. e14772 ◽  
Author(s):  
Jeffrey C Greene ◽  
Jolie N Haun ◽  
Dustin D French ◽  
Susan L Chambers ◽  
Robert H Roswell

Background The association between health literacy and health care costs, particularly for hospitalizations and emergency room services, has been previously observed. Health information interventions aimed at addressing the negative impacts of inadequate health literacy are needed. The MedEncentive Mutual Accountability and Information Therapy (MAIT) Program is a Web-based system designed to improve health and lower costs by aligning patient-doctor incentives. Objective In this mixed methods study of a Web-based patient-doctor aligned-incentive, information therapy program conducted in an 1800-member employee health plan, we aimed to (1) determine the program’s quantitative impact on hospitalization and emergency room utilization and costs, and (2) assess survey responses about the program’s perceived value. Methods We used a mixed methods, single within-group, pre-post, descriptive study design. We analyzed quantitative data using pre-post mean utilization and cost differences and summarized the data using descriptive statistics. We used open-ended electronic survey items to collect descriptive data and analyzed them using thematic content analysis. Results Hospitalizations and emergency room visits per 1000 decreased 32% (26.5/82.4) and 14% (31.3/219.9), respectively, after we implemented the program in 2015-2017, relative to 2013-2014. Correspondingly, the plan’s annual per capita expenditures declined US $675 (95% CI US $470-865), or 10.8% ($675/$6260), after program implementation in 2015-2017 (US $5585 in 2013-2014 dollars), relative to the baseline years of 2013-2014 (US $6260; P<.05). Qualitative findings suggested that respondents valued the program, benefiting from its educational and motivational aspects to better self-manage their health. Conclusions Analyses suggested that the reported reductions in hospitalizations, emergency room visits, and costs were associated with the program. Qualitative findings indicated that targeted users perceived value in participating in the MAIT Program. Further research with controls is needed to confirm these outcomes and more completely understand the health improvement and cost-containment capabilities of this Web-based health information, patient-doctor, aligned-incentive program.


2019 ◽  
Author(s):  
Michael M McKee ◽  
Peter C Hauser ◽  
Sara Champlin ◽  
Michael Paasche-Orlow ◽  
Kelley Wyse ◽  
...  

BACKGROUND Deaf American Sign Language (ASL) users often struggle with limited health literacy compared with their hearing peers. However, the mechanisms driving limited health literacy and how this may impact access to and understanding of health information for Deaf individuals have not been determined. Deaf individuals are more likely than hearing individuals to use the internet, yet they continue to report significant barriers to health information. This study presents an opportunity to identify key targets that impact information access for a largely marginalized population. OBJECTIVE This study aims to elucidate the role of information marginalization on health literacy in Deaf ASL users and to better understand the mechanisms of health literacy in this population for the purpose of identifying viable targets for future health literacy interventions. METHODS This is an exploratory mixed methods study to identify predictors and moderators of health literacy in the Deaf population. These predictors of health literacy will be used to inform the second step that qualitatively explains the findings, including how Deaf individuals access and understand Web-based health information. Multiple interviewer- and computer-based instruments underwent translation and adaptation, from English to ASL, to make them accessible for the Deaf participants in our study. A planned sample of 450 Deaf ASL users and 450 hearing native English speakers, aged 18 to 70 years, will be recruited from 3 partnering sites: Rochester, NY; Flint, MI; and Chicago, IL. These individuals will participate in a single data collection visit. A subset of participants (approximately 30) with key characteristics of interest will be invited for a second data collection visit to observe and inquire more about their ability to directly access, navigate, and comprehend Web-based health information. The study will help assess how the ways health literacy and information are visualized may differ between Deaf individuals and hearing individuals. The study will also survey participants’ ownership and use of computer and mobile devices and their level of Web-based information use, including health information. RESULTS Adaptation and translation of protocols and instruments have been completed and are now in use for the study. Recruitment is underway and will continue until late 2020. Results from this study will be used to provide a guide on how to structure Web-based health information in a way that maximizes accessibility and improves health literacy for Deaf individuals. CONCLUSIONS The results from this mixed methods proposal will advance what is known about health literacy and health information accessibility for Deaf individuals. This innovative study will generate rich data on how to formulate health information and health literacy interventions more accurately to take advantage of visual learning skills. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/14889


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