Project Date: August 2019 - August 2023
My Role: UX research, UX/UI design, study design, survey design, study protocol development, recruitment, data collection, data analysis, ideation, poster preparation/write up, manuscript preparation/write up
Project Team:
Mariam Paracha, Project Lead & Principal Investigator Adjunct Professor, Rochester Institute of Technology/National Technical Institute of the Deaf (RIT/NTID)
Adjunct Instructor, University of Rochester Center for Health + Technology (CHeT)Ellie Wagner, UX Lead (Independent Consultant)
Senior UX Specialist, University of Rochester Center for Health + Technology (CHeT)Olivia Brumfield, Research Assistant Research Associate, 2021 University of Rochester graduate
Kaixin Li, UX Intern Research Assistant, 2021 University of Rochester graduate
Collaborators:
Charles Venuto
Associate Professor, University of Rochester Department of Neurology & Center for Health + Technology (CHeT)
Funding: Coronavirus Response and Relief Supplemental Appropriations Act (CRRSAA), American Rescue Plan of 2021 (ARP) to National Technical Institute for the Deaf (NTID), NIH
Overview
Background
Access to medication information is a major challenge for the Deaf and Hard of Hearing community (D/HH), especially relating to understanding prescription labels. Existing research has shown that D/HH often experience confusion and/or frustration relating to the use of medications, a situation which has the potential to contribute to a high rate of medication misuse. This situation is especially concerning given the fact that D/HH individuals, as a medically underserved group, tend to experience less than optimal health outcomes when compared to the general population. Furthermore, pharmacists oftentimes are not prepared to communicate effectively with D/HH. That said, digital technology has helped to transform communication for the D/HH community, and our aim is to explore how technology using ASL may contribute to improving accessibility and communication relating to pharmacy-related experiences. Throughout this project, we are collaborating with the D/HH community and experts in public advocacy, emergency medicine, public health, and pharma, among others.
Goal
The goal of the RxASL project is to provide D/HH populations access to easily understood prescription medication information. To achieve this goal, the project aims to: (1) gain a more enhanced understanding of D/HH experiences and processes involved in understanding prescription medication use, (2) assess interest in, preferences for, and usefulness of a technology-based support tool, and (3) leverage insights to inform the development of an ASL-friendly technology-based medication information tool, tentatively called RxASL.
PROCESS
Literature Review
We began by conducting an in-depth literature search to inform our understanding of the challenges within the D/HH community due to disparities in health literacy and accessibility to medication information. Our focus was on materials and resources relating to health needs, technology-oriented practices, and design principles -- all specific to the D/HH user experience. Through this review we gained valuable insights into the medical information-seeking behaviors of the D/HH community and their preferences, needs, expectations, and capacities with respect to technology-oriented practices.
Competitive Analysis
The next step was to complete a competitive analysis of various mobile apps across multiple industries and domains to situate the potential of our ASL-based app within the problem space. We identified: (1) features and functionalities which work well -- or do not work well -- for the D/HH community and are appropriate to our concept for an ASL-based mobile tool, (2) patterns of technology use for this population, and (3) potential design elements to leverage.
We explored the following:
Apps designed specifically for D/HH users, not necessarily health-focused (Mariam)
Apps with health profiles (Ellie)
Apps relating to prescription medications (Ellie)
Apps with camera functionality (Ellie)
Key Finding: None of the mobile apps designed specifically for D/HH users -- Sign Support, iSignIT, Ava -- had functionality needed to solve the communication problem identified.
Initial Ideation & Sketching
In preparation for a presentation at the Deaf-Engaged Academic Forum (DEAF ROC) in Rochester, NY, Mariam and I engaged in a design sprint over the course of 2.5 weeks in spring 2019 to “flesh out” the concept for our ASL-based mobile app. Based on insights from our research and ideas from brainstorming sessions, I created a design scrapbook with ideas/inspiration for future ideation, including several screen mockups. Then in August 2019, Mariam and I showcased our concept for a mobile app in a poster presentation at DEAF ROC. We received valuable preliminary feedback from conference attendees, including experts in academia, government, and pharma. All reinforced the need for a successful solution in this problem space, and many provided suggestions for advancing the concept forward.
Initial Mobile App Mockups
Below are screens prepared during the design sprint. I created these mockups using Sketch.
Home Screen: This is the personalized home page for the RxComm app. Once the user opens the app and creates an account, the app welcomes the user by name. As envisioned, the user will be able to access 4 primary features: Pill ID, MyPharmacy, MyHealth, and MyDoctors.
Pill ID Screen 1: This is the first of 2 screens for the Pill ID feature, the primary feature of the app. This screen presents an overview of the feature with instructions provided in an ASL-video.
Pill ID Screen 2: This screen displays medication information once the user takes a photo of the pill imprint. Output includes an image of the pill, information about the medication, and an ASL-video which provides explanation of the medication. To view the full screen, the user simply scrolls down.
The screens, My Pharmacy, MyHealth, and MyDoctors, are still in the ideation stages.
Initial Discovery Survey
Building on the momentum generated over the summer of 2019, Mariam and I created a brief online survey as our first structured outreach to the D/HH community. Our aim was to gather data on the types and sources of information, which D/HH individuals rely on most often to understand prescription medications. Together we brainstormed questions, and I designed the survey using Google Forms. The multiple-choice questions were provided in both written form and in ASL videos, which were recorded by Mariam. In addition, Miriam distributed the survey online via D/HH ASL-user specific Facebook groups. We received 21 responses to the survey nationwide.
Key Findings
The results of this initial survey underscore the challenges that D/HH individuals face seeking and understanding medication information and reinforced the need for further in-depth research into D/HH pharmacy experiences. As such, these findings framed the more in-depth questions used in the first round of discovery interviews.
Initial Discovery Interviews
In the fall of 2019, I developed a series of questions for use in online and in-person interviews, which Mariam conducted in ASL with D/HH individuals as well as with healthcare professionals who engage with the D/HH community. Once the interviews were completed, I analyzed the data. These interviews were conducted as part of the Upstate New York NSF I-Corps Short Course. The Upstate New York NSF I-Corps Course Node in our region is open to professionals at the University of Rochester, Rochester Institute of Technology, University of Buffalo, and Cornell University. At the end of the course, Mariam and I presented the findings to the course instructors and class participants.
Key Findings
Insights from this exploratory phase helped us to focus user research moving forward specifically on the experiences of Deaf individuals, who face distinct obstacles in overcoming barriers to pharmacy-related communication.
The Initial Discovery Survey and Interviews were designed as informal research initiatives and served as the basis for the IRB-approved interview series and survey discussed below.
In-Depth Interviews
As a complement to the I-Corps interviews, we conducted a series of IRB-approved targeted in-depth interviews with Deaf individuals only. Our aim was to gain a more enhanced understanding of the processes and experiences associated with the use of prescribed medications -- and assess the potential role of technology in addressing existing challenges for this population. The interviews covered pharmacy experiences relating to medication pick up, communication with pharmacists/pharmacy workers, and level of comfort understanding medication information/labels. In addition, we asked participants about the usefulness and perceived ease-of use of technology.
My contributions included preparing the IRB submission, writing the study protocol, creating interview questions, preparing recruitment materials, developing an analysis plan, analyzing data and coding, as well as writing results. Mariam conducted all of the interviews in ASL via Zoom between fall 2020 and spring 2021.
Results coming soon!
In-Depth Survey
As follow-up to the in-depth interviews, we developed a second online survey — IRB-approved — aimed at gathering specific feedback in three domains: (1) needs and preferences relating to pharmacy and prescription medication experiences, (2) technology use and preferences relating to medication information-seeking behaviors, and (3) areas of interest which emerged from, but were not directly addressed in, the initial interviews and survey.
From January 2021 - May 2021, Mariam, Kaixin, and I brainstormed ideas for this survey. I then developed initial ideas for the survey questions and provided ongoing feedback on question development, flow, and build in Qualtrics. Kaixin took the lead, under my supervision, in refining the survey questions, building the survey in Qualtrics, and leading the analysis. The survey was distributed in September 2021 via research registries at the University of Rochester and targeted social media outreach.
Screenshot of survey
Results coming soon!
PResentationS & publications
Paracha, M., Asiamah, M., Wagner, E., Brumfield, O.^, Essex, B. (2023). Medication Literacy: Toward a Web-Based Assessment for Deaf ASL Users. Poster presented at the American Public Health Association Annual (APHA) Meeting. Atlanta, Georgia.
Paracha, M., Wagner, E.*, Brumfield, O.^, Winninghoff, J., Wright , J., Rotoli, J., and Hauser, P. (2023). Medication-Related Experience of Deaf American Sign Language Users. Health Literacy Research and Practice, 7(4), e215-e224.
Paracha, M., Wagner, E.*, Brumfield, O.^ (2022). Medication-Related Experience of Deaf ASL Users. Poster presented at the American Public Health Association Annual (APHA) Meeting. Boston, Massachusetts.
Paracha, M., Asiamah, M.^, Essex, B.^, Wagner, E., and Brumfield, O.^ (2022). Pharmacy Experiences of Deaf/Hard of Hearing in COVID-19 Pandemic. Association of Medical Professionals with Hearing Losses (AMPHL) Annual Conference. Las Vegas, Nevada.
Essex, B.^, Li, K.^, Brumfield, O.^, Wagner, E., Paracha, M. (2022). RxASL: Medication-Related Experiences of Deaf ASL Users. Poster presented at the DEAF/HH Scientists ROC Conference. University of Rochester and Rochester Institute of Technology, Rochester, New York.
Paracha, M., Wagner, E., Brumfield, O.^, Li, K.^ (2022). RxASL: Mixed-Methods Study on Accessible Medication Information. Equity, Diversity, and Inclusion Leadership Summit. University of Rochester, Rochester, New York.
Paracha, M., Wagner, E., Brumfield, O.^, and Venuto, C. (2020). RxASL: Improving Medication Literacy for the Deaf Community. Poster accepted to the University of Rochester Diversity Conference: Equity Across Our Communities, but not presented due to COVID-19 conference cancellation.
Paracha, M., Wagner, E., Javidnia, M., and Venuto, C. (2019). RxComm: A Proposed Tool to Make Prescription Drug Information Accessible, Accurate, and Actionable for ASL Users. Poster presented at the Deaf-Engaged Academic Forum (DEAF ROC). University of Rochester, Rochester, New York.
*indicates co-first authors
^ indicates undergraduate or graduate student author at the time