Use of Design Science for Informing the Development of a Mobile App for Persons Living with HIV Rebecca Schnall, PhD, MPH, RN1, Marlene Rojas, MPH, MD1, Jasmine Travers, AGNP-C, RN1, William Brown III, DrPH, MA2,3, Suzanne Bakken, PhD, RN, FAAN1,3 1
Columbia University, School of Nursing, New York, NY; 2New York State Psychiatric Institute and Columbia University, HIV Center for Clinical and Behavioral Studies, New York, NY; 3Columbia University, Department of Biomedical Informatics, New York, NY
Abstract Mobile health (mHealth) technology presents opportunities to enhance chronic illness management, which is especially relevant for persons living with HIV (PLWH). Since mHealth technology comprises evolving and adaptable hardware and software, it provides many challenging design problems. To address this challenge, our methods were guided by the Information System Research (ISR) framework. This paper focuses on the Design Cycle of the ISR framework in which we used user-centered distributed information design methods and participatory action research methods to inform the design of a mobile application (app) for PLWH. In the first design session, participants (N=5) identified features that are optimal for meeting the treatment and management needs of PLWH. In the second design session, participants (N=6) were presented with findings from the first design session and pictures of existing apps. Findings from the Design Cycle will be evaluated with usability inspection methods. Using a systematic approach has the potential to improve mHealth functionality and use and subsequent impact. Introduction Despite advances, The United States (US) Human Immunodeficiency Virus (HIV) epidemic continues to take a heavy toll, which is evidenced by the 1.2 million Americans who are currently living with the disease. New York City, the setting of our study, is the epicenter of the US HIV/AIDS epidemic, accounting for 17.9% of the estimated number of persons living with HIV (PLWH) in the US 1. The burden of HIV/AIDS is borne disproportionately by a growing number of racial and ethnic minorities2. Forty eight percent (48.7%) of new HIV diagnoses are among African Americans and 31.3% were among Latinos 3. Mobile health (mHealth) Mobile health (mHealth) is focused on the use of mobile information and communication technologies for healthcare purposes. mHealth aims to support care delivery through meeting information, communication, and documentation needs of patients, clinicians, and other healthcare workers, as well as facilitating health resource monitoring and management 4. The development and use of mobile technologies to rapidly and accurately assess and modify health-related behavior and biological states has great potential for improving healthcare delivery. Advancements in current mobile technology allow for more memory and data storage, full color graphical interfaces with video capability, wireless access, location awareness, and integration with other computer-mediated technologies. Specifically, the use of mobile technology affords numerous advantages, including reduced memory bias, the ability to capture time-stamped data, and the potential for personalizing and tailoring information in realtime. The ubiquitous nature of mobile technologies in daily life has created opportunities for applications (apps) that were not previously possible. Thus, mHealth presents opportunities to enhance chronic illness management in realtime 5. In fact, the use of mobile apps and technology has the potential to reduce costs, reduce geographical and economic disparities, and personalize healthcare. Of particular relevance to this work, the use of mHealth has made a huge impact on communication, access, and information/resource delivery especially among racial and ethnic minority groups 6-8 and offers an ideal venue for meeting targeted healthcare needs for racial and ethnic minorities, as well as youth, who are the fastest growing age group affected by HIV 9. As the HIV epidemic continues to grow among adolescents and young adults, mHealth technology can address many of the healthcare needs of PLWH including: adherence to HIV medications, prevention with positives, retention in care and self-management, all critical needs for this population. mHealth technology can bridge a divide in healthcare delivery in underserved minority groups, since ownership of a mobile
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device is more common among African Americans than among Whites (87% vs. 80%) 7. African Americans are also among the most active users of the mobile Internet and take advantage of a much greater range of their phones’ features than do Whites 10. This grants the potential to ameliorate health disparities, since in the case of HIV, health disparities are inextricably linked to age, race and ethnicity. Due to the high incidence of HIV among minorities, adolescents and underserved young adults, and their reliance on mobile technology, it is appropriate to develop health information technology (HIT) tools tailored to the needs of this population. Theoretical Framework Design science is the development, implementation, evaluation, and adaptation of artifacts for problem solving 11,12 and attempts to focus human creativity into the design and construction of artifacts that have utility for mobile apps. Design activities are central to most applied disciplines, including health informatics, and are particularly relevant and necessary for the development of mHealth technology that is safe, useful, and effective for end-users 13. mHealth technology is composed of mutable and adaptable hardware, software, and human interfaces and so it provides many unique and challenging design problems that call for new and creative ideas. The design science research paradigm is highly relevant to mHealth research and supports the creation of innovative artifacts to solve real-world problems.
Our study activities were guided by the Information System Research (ISR) Framework, which uses design science to inform the development of information systems 11. The design and development cycle is repeated iteratively until a desired final product is achieved. Using the ISR Framework (shown in Figure 1), we employed three research cycles: I) the Relevance Cycle in which we seek to understand the environment of the end-user by determining requirements through a series of interactions (e.g., focus groups, interviews) with stakeholders; II) the Rigor Cycle, in which evaluation of theories and artifacts contribute to the design science and application domain knowledge base; and III) the Design Cycle in which artifacts are produced and evaluated 11. The result of HIT-related research activities informed by the ISR framework is the purposeful creation of artifacts developed to address an important health problem. Research Context The activities reported here reflect a single cycle that was part of a larger research project to inform the development of two mobile apps for: 1) HIV treatment and care for PLWH and 2) HIV prevention for high-risk Men who have sex with Men (MSM). Research activities reported here focus on the development of a mobile app for PLWH. To guide this work, we used user-centered information design methods 14 and participatory action research methods 15 to ensure that the app met end-user needs. The overall goal of this two year project was to create a Design Document for the Centers for Disease Control and Prevention (CDC) to inform the development of two mobile apps for dissemination. Prior to the design sessions, we conducted study activities related to the Rigor and Relevance Cycles. The project activities discussed in this manuscript focus on Cycle III: The Design Cycle: Develop/ Build activities
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for the mobile app for PLWH only. Cycle I: The Relevance Cycle: For this cycle, we conducted six focus group sessions with PLWH (N=50) ages 1859 and three focus group sessions with HIV care providers (N=30) to identify the desired content, features, and function of a mobile app for PLWH. Results of this work are reported elsewhere16. Thematic analysis of the focus group session revealed five categories of functional requirements: My Information Management, Managing My Medication, Staying Healthy, Communication (divided into provider communication and peer communication) and Resources. Participants suggested some of the following tools and functionalities for inclusion in a mobile app for meeting their health needs: reminders/alerts, lab tracking, notes, chat boxes/forums, testimonials of lived experiences, personal outreach, games/virtual rewards, coding of health tasks, and simulation on how to disclose their HIV status. Cycle II: The Rigor Cycle: The rigor cycle guided our selection of theories and methods for designing and evaluating the Design Document 17. We conducted a systematic review of existing studies, which used mobile technology and e-Health applications for HIV treatment and care. In addition, we did an ecological scan of the existing mobile applications that are already frequently used by many in our study population. Cycle III: The Design Cycle: Develop/Build: The goal of this cycle is to improve the design and to increase the likelihood of technology acceptance. The design cycle is sub-divided into two phases: Develop/Build and Evaluate. Our activities reported in this paper focus on the Develop/Build phase, which centers on the creation of a highly usable artifact. To achieve the goals of this cycle, we incorporated findings from the earlier parts of our study. These include a list of content, features, and functions from the focus groups, as well as findings from the literature review. We used user-centered distributed information design methods 14 and participatory action research methods 15 for the development of our user-centered participatory design session activities. We conducted two design sessions; each successive design session was developed based on the information gathered in the previous design session. Methods Design Session I: Sample For our first design session, we recruited five PLWH who had previously participated in our focus group sessions. We had two male and three female participants whose ages ranged from 39-59 years. Two participants reported their ethnicity as being Latino and three participants reported their race as African American. One participant had never used a smartphone. For their participation, study subjects were given $25 and provided lunch as a token of appreciation for their time. Procedures The first design session was audio recorded and lasted approximately two hours. Study team members were present during the session and took notes. The goal of this session was to identify optimal features for improving HIV treatment and management needs of PLWH. Using the findings from the focus group sessions we developed an initial list of content, features and functions. During this session, participants discussed topics and did not look at existing apps or prototypes. For this session, we did not benchmark with other apps so as not to remove the creativity out of the intended purpose of the design session. We asked participants to imagine each of the broad categories, identified from our focus group analysis, as a separate screen on a mobile app. We presented this information in a PowerPoint as a starting point as we sought to identify the functional requirements for a prototype of a mobile app. We presented the categories derived from our focus group sessions to the participants and asked them to discuss the content and features that would be included as functionality in a mobile app. Participants were encouraged to revise the information presented and discussion was stimulated by a set of probing questions, including: What information do you need from a mobile app related to your treatment regimen? What would make some of the current apps that you use better? The study team met and coded the transcripts and notes from the design session to inform the content (What) and features (How) of the mobile app.
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Results Results from the first design session are categorized by topic area, derived from the Cycle I focus group sessions, and reported in Table 1. In addition to the content and features, participants also identified usability factors which would make it more likely for them to use this app. Participants mentioned it would be important not to have too many screens to access information. In addition, participants noted the user interface as well as the information presented should be “simple and straightforward.” Finally, participants stressed the importance of confidentiality and privacy, reinforcing the critical need of passwords to ensure the information in the app was secure.
Table 1. Results from Design Session I Topic Area What Lab results HIV and all My Information lab work Management Information on non HIV medications Managing Your Medications
Medication information
Medication reminders
Medication tracker Staying Healthy
Diet/Nutrition Exercise Harm reduction Measuring risk Mental health Condom information STD information
Communication
Provider-patient communication
Peer communication Resources
Support group locations Condom distribution locations Latest HIV news
How Lab tracker Quick search feature for medications Health-related to-do list for HIV positives Information on which medications need to be taken with or without food, and specify the type of foods Provide generic and brand names of medications Medication Interactions Visuals of medications with information on why to take it Provide specific times, not just twice a day; the specific hours one dosage should be from the next Medication refills Missing doses chart; how it would affect the efficacy of the medication, and the risk of not staying undetectable Food log/diary Calorie tracker Measure physical activity Pre-Exposure Prophylaxis (PrEP) Risk calculator Stress reduction measures Information about types and sizes of condoms Games must be sensitive to users - i.e., brain or light bulb with big eyes and bubble pop ups with information Virtual lectures given by providers Face-to-face communication with provider Able to share/send information with provider Virtual support groups with providers Digital audio recorder Role playing videos Social networking links Voice activated “siri” GPS mapping GPS mapping and information on distribution sites Newsfeeds
Design Session II: Sample For our second design session, we had six participants, all of whom participated in the earlier focus group sessions. However, only three had participated in the first design session. We had 3 male and 3 female participants whose ages ranged from 39-59 years. Two participants self-identified as Latino and four participants identified as African
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American. Five of the participants were smartphone users. Of those participants who used a smartphone, social networking apps were the most frequently used applications. Procedures We audio recorded this session, which lasted approximately 100 minutes. The goal of the second design session was to gain information about the user interface so that prototypes could be created at the end of this design session. The investigator who ran the design session helped the end-user participants sketch a user interface of the desired mobile app. In this session, we presented the findings from the first design session as categories along with pictures of existing apps. Sticky post-it boards, size 25”x30”, were posted on the walls of the room. Each post-it board was designated for one of the topic areas listed in Table 1. Participants were asked to identify the components to include under each topic area. The same broad categories were used as in the first design session, reported above. Once again, participants were reminded that each of the categories would be a screen on the app and were asked to describe the content, features and interface they would want to see in an app. After participants shared their ideas, we asked probing questions to stimulate discussion about the existing apps and the need for refined content, features, and interface design. The questions were: What information do you need from a mobile app related to your treatment regimen? Which information from your healthcare visits should be viewable on your app? Participants were asked to identify app preferences including platform and design requirements, navigational features, and marketing preferences.
Figure 2: Sample Apps for Medication Reminders and Tracking
Following these questions pictures of existing apps were presented. Sample apps are in Figures 2 and 3. Participants were asked to comment on the features and interface of the existing apps.
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Figure 3: Sample Apps for My Information Management
Results Participants made suggestions on the content as well as the interface of their desired app. Participants commented on the existing apps and described which features have the potential to work well for them. Moreover, participants identified features and interfaces, which were confusing and would not meet their needs. Importantly, participants had mixed views on whether they would want their app to be used as a communication tool with providers. Most participants said that they would want to be able to communicate with peers for support as well as share HIV information and other resources. While the participants reviewed and commented on the existing apps, the design session leader sketched designs of the app on post-it boards so the participants could visualize the app. For each of the broad categories, a user interface was sketched. Sample sketches are in Figure 4.
Figure 4: Sketches of Managing Your Medications and My Information Management Screens
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Findings from the design sessions informed Cycle III: The Design Cycle: Build. Based on the results of the white board design, a final user interface for the prototype system was developed. We developed a low-fidelity prototype of user interface screens using a Web development tool based upon the results of the design sessions. The design sessions’ findings provided information for drafting formal functional requirements, which will be refined during prototype evaluation prior to inclusion in the Design Document. The prototypes of two screens in our build phase can be found in Figure 5. These prototypes mirror the sketches presented in Figure 4. In addition, findings from our design sessions informed the creation of a map of the screen order of the mobile app. Use of a low-fidelity prototype will enable us to explore and understand our potential end-user’s preferences related to content functionality (e.g. a calendar to record an appointment for HIV testing), as well as their ability to achieve tasks associated with the prototype content (e.g., scheduling a reminder in a calendar).
Figure 5: Mock-Ups of Medication Reminder and Lab Results Screens
The goal of Cycle III: The Design Cycle: Evaluate in order to improve the design, and to increase the likelihood of technology acceptance. To achieve this goal we will evaluate the user interface and system functions of the prototype and assess whether they are consistent with the end-users’ needs. We plan to conduct two types of usability assessments: 1) a heuristic evaluation using informaticians with experience in interface design, 2) and enduser usability testing with PLWH. Discussion To achieve the goal of designing a mobile app for meeting the healthcare needs of PLWH, we used the ISR Framework to inform our design processes in order to build an artifact for further testing. 18 The design sessions
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were an iterative process whereby study participants were considered the experts and teachers, and the investigators were the learners. The study participants contributed to the design ideas, provided feedback regarding effective interfaces, and explained which aspects of mobile interfaces, functions, and tasks they found appealing. With increasing evidence related to the use of mHealth for improving and managing health conditions, there is recognition that scientific methods are needed to help determine how best to use mobile platforms for delivering health information. In this paper a detailed description of a novel user-centered methodology integrated with a rigorous theoretical framework is provided. Frequent interactions between developers and end-users have been noted to result in positive project outcomes. Therefore, rigorous development with end-user input is critical for the development of mHealth tools 19. Using the ISR framework to guide our study design, we used qualitative methods, focus groups followed by enduser design sessions, which allowed us to develop an end-user perspective and not rely on the researchers’ assumptions about what is important. Based on the premise that an app designed from an end-user perspective is more likely to support user needs, we applied user-centered approaches to design the content, features, and interface for a mobile app for PLWH. Limitations Our research focused on a single geographic area with a small sample of PLWH. Additionally, the age of those who participated in the design session activities (ages 39-59) was higher than the identified target group, adolescents and young adults. Even so, our design session activities were informed by our findings from the focus group sessions, which included a representative sample of adolescents and young adults. This paper focuses on the process for designing a mHealth app. Further evaluation is necessary to determine whether adopting this theoretical framework for system design will improve usability and patient outcomes. The next steps for this work include a rigorous usability evaluation. Future work should also focus on the impact of a mHealth app designed through rigorous user-centered designed methods as compared to many currently available patient support apps which were not developed using a rigorous user-centered design approach. The findings from our design session must be considered in context of the limitations of our study. Nonetheless, this work introduces a framework of system development that is perhaps more systematic and comprehensive than the development process adopted for many existing health systems. The methods that we developed and refined may be useful to others who are designing mHealth technology tools and developing HIT tools for chronically ill patients. Conclusions For this work, we used user-centered distributed information design methods and participatory action research methods to identify the mobile app design preferences of PLWH. Our novel approach of integrating design science and user-centered qualitative methods is unique to the design and evaluation of mHealth applications. Given our focus on design specifications from the end-user perspective, findings from this work have the potential to result in sustained use and long-term appeal for PLWH. Acknowledgments This publication was supported by a cooperative agreement between Columbia University School of Nursing and the Centers for Disease Control and Prevention (1U01PS00371501). Rebecca Schnall is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant Number KL2 TR000081, formerly the National Center for Research Resources, Grant Number KL2 RR024157. William Brown III is supported by NLM research training fellowship T15 LM007079 and NIMH center grant P30 MH43520. Jasmine Travers is supported by an award from the National Institute of Nursing Research of the National Institutes of Health (R01NR013687, PI: P.W.S). The findings and conclusions in this paper do not necessarily represent the views of the Centers for Disease Control and Prevention.
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New York City Department of Health and Mental Hygiene. HIV Epidemiology and Field Services. Semiannual Report. April 2011. 2011; http://www.nyc.gov/html/doh/html/dires/epi_reports.shtml. Accessed December 21, 2011. mHealth Alliance. Frequently Asked Questions, 2011. 2010; http://www.mhealthalliance.org/about/frequently-asked-questions. Accessed August 3, 2011. Estrin D, Sim I. Health care delivery. Open mHealth architecture: an engine for health care innovation. Science. Nov 5 2010;330(6005):759-760. Lenhart A, Purcell K, Smith A, Zickuhr K. Social Media and Young Adults. 2010; http://www.pewinternet.org/Reports/2010/Social-Media-and-Young-Adults.aspx. Accessed March 28, 2010. Lenhart A. Teens and Mobile Phones Over the Past Five Years: Pew Internet Looks Back. 2009; http://www.pewinternet.org/Reports/2009/14--Teens-and-Mobile-Phones-Data-Memo/1-Data-Memo/5How-teens-use-text-messaging.aspx?r=1. Accessed March 28, 2010. Hachman M. More Kids Using Cell Phones, Study Finds 2009; http://www.pewinternet.org/MediaMentions/2009/More-Kids-Using-Cell-Phones-Study-Finds.aspx. Accessed March 28, 2010. Lenhart A, Hitlin P, Madden M. Teens and Technology. 2005; http://www.pewinternet.org/Reports/2005/Teens-and-Technology/06-Communications-Tools-andTeens/17-Cell-phone-text-messaging-emerges-as-a-formidable-force.aspx?r=1. Accessed March 28, 2010. Brown III W. New Media Interventions in Youth Sexual Health Promotion and HIV/STI Prevention, . Berkley, University of California, Berkeley; 2010. Hevner AR. A three cycle view of design science research. Scandinavian journal of information systems. 2007;19(2). Simon HA. The Sciences of the Artificial. 3rd ed. Cambridge, Mass.: MIT Press; 1996. Cross N. Designerly Ways of Knowing: Design Discipline vs. Design Science. Design Issues. 2001;17(3):49-55. Zhang J, Patel VL, Johnson KA, Smith JW. Designing human-centered distributed information systems. IEEE Intelligent Systems. 2002:42-47. Baum F, MacDougall C, Smith D. Participatory action research. J Epidemiol Community Health. Oct 2006;60(10):854-857. Schnall R, Bakken S, Rojas M, et al. Design of a Mobile App as a Persuasive Technology for Persons Living with HIV. AIDS Patient Care and STDs. In preparation. Hevner AR, Chatterjee S. Design Research in Information Systems: Theory and Practice. Vol 22. New York, NU: SpringerLink; 2010. Hevner AR, March ST, Park J, Ram S. Design Science in Information Systems Research. MIS Quarterly. 2004;28(1):75-105. Hyun S, Johnson SB, Stetson PD, Bakken S. Development and evaluation of nursing user interface screens using multiple methods. Journal of Biomedical Informatics. 12// 2009;42(6):1004-1012.
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Columbia University, School of Nursing, New York, NY; 2New York State Psychiatric Institute and Columbia University, HIV Center for Clinical and Behavioral Studies, New York, NY; 3Columbia University, Department of Biomedical Informatics, New York, NY
Abstract Mobile health (mHealth) technology presents opportunities to enhance chronic illness management, which is especially relevant for persons living with HIV (PLWH). Since mHealth technology comprises evolving and adaptable hardware and software, it provides many challenging design problems. To address this challenge, our methods were guided by the Information System Research (ISR) framework. This paper focuses on the Design Cycle of the ISR framework in which we used user-centered distributed information design methods and participatory action research methods to inform the design of a mobile application (app) for PLWH. In the first design session, participants (N=5) identified features that are optimal for meeting the treatment and management needs of PLWH. In the second design session, participants (N=6) were presented with findings from the first design session and pictures of existing apps. Findings from the Design Cycle will be evaluated with usability inspection methods. Using a systematic approach has the potential to improve mHealth functionality and use and subsequent impact. Introduction Despite advances, The United States (US) Human Immunodeficiency Virus (HIV) epidemic continues to take a heavy toll, which is evidenced by the 1.2 million Americans who are currently living with the disease. New York City, the setting of our study, is the epicenter of the US HIV/AIDS epidemic, accounting for 17.9% of the estimated number of persons living with HIV (PLWH) in the US 1. The burden of HIV/AIDS is borne disproportionately by a growing number of racial and ethnic minorities2. Forty eight percent (48.7%) of new HIV diagnoses are among African Americans and 31.3% were among Latinos 3. Mobile health (mHealth) Mobile health (mHealth) is focused on the use of mobile information and communication technologies for healthcare purposes. mHealth aims to support care delivery through meeting information, communication, and documentation needs of patients, clinicians, and other healthcare workers, as well as facilitating health resource monitoring and management 4. The development and use of mobile technologies to rapidly and accurately assess and modify health-related behavior and biological states has great potential for improving healthcare delivery. Advancements in current mobile technology allow for more memory and data storage, full color graphical interfaces with video capability, wireless access, location awareness, and integration with other computer-mediated technologies. Specifically, the use of mobile technology affords numerous advantages, including reduced memory bias, the ability to capture time-stamped data, and the potential for personalizing and tailoring information in realtime. The ubiquitous nature of mobile technologies in daily life has created opportunities for applications (apps) that were not previously possible. Thus, mHealth presents opportunities to enhance chronic illness management in realtime 5. In fact, the use of mobile apps and technology has the potential to reduce costs, reduce geographical and economic disparities, and personalize healthcare. Of particular relevance to this work, the use of mHealth has made a huge impact on communication, access, and information/resource delivery especially among racial and ethnic minority groups 6-8 and offers an ideal venue for meeting targeted healthcare needs for racial and ethnic minorities, as well as youth, who are the fastest growing age group affected by HIV 9. As the HIV epidemic continues to grow among adolescents and young adults, mHealth technology can address many of the healthcare needs of PLWH including: adherence to HIV medications, prevention with positives, retention in care and self-management, all critical needs for this population. mHealth technology can bridge a divide in healthcare delivery in underserved minority groups, since ownership of a mobile
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device is more common among African Americans than among Whites (87% vs. 80%) 7. African Americans are also among the most active users of the mobile Internet and take advantage of a much greater range of their phones’ features than do Whites 10. This grants the potential to ameliorate health disparities, since in the case of HIV, health disparities are inextricably linked to age, race and ethnicity. Due to the high incidence of HIV among minorities, adolescents and underserved young adults, and their reliance on mobile technology, it is appropriate to develop health information technology (HIT) tools tailored to the needs of this population. Theoretical Framework Design science is the development, implementation, evaluation, and adaptation of artifacts for problem solving 11,12 and attempts to focus human creativity into the design and construction of artifacts that have utility for mobile apps. Design activities are central to most applied disciplines, including health informatics, and are particularly relevant and necessary for the development of mHealth technology that is safe, useful, and effective for end-users 13. mHealth technology is composed of mutable and adaptable hardware, software, and human interfaces and so it provides many unique and challenging design problems that call for new and creative ideas. The design science research paradigm is highly relevant to mHealth research and supports the creation of innovative artifacts to solve real-world problems.
Our study activities were guided by the Information System Research (ISR) Framework, which uses design science to inform the development of information systems 11. The design and development cycle is repeated iteratively until a desired final product is achieved. Using the ISR Framework (shown in Figure 1), we employed three research cycles: I) the Relevance Cycle in which we seek to understand the environment of the end-user by determining requirements through a series of interactions (e.g., focus groups, interviews) with stakeholders; II) the Rigor Cycle, in which evaluation of theories and artifacts contribute to the design science and application domain knowledge base; and III) the Design Cycle in which artifacts are produced and evaluated 11. The result of HIT-related research activities informed by the ISR framework is the purposeful creation of artifacts developed to address an important health problem. Research Context The activities reported here reflect a single cycle that was part of a larger research project to inform the development of two mobile apps for: 1) HIV treatment and care for PLWH and 2) HIV prevention for high-risk Men who have sex with Men (MSM). Research activities reported here focus on the development of a mobile app for PLWH. To guide this work, we used user-centered information design methods 14 and participatory action research methods 15 to ensure that the app met end-user needs. The overall goal of this two year project was to create a Design Document for the Centers for Disease Control and Prevention (CDC) to inform the development of two mobile apps for dissemination. Prior to the design sessions, we conducted study activities related to the Rigor and Relevance Cycles. The project activities discussed in this manuscript focus on Cycle III: The Design Cycle: Develop/ Build activities
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for the mobile app for PLWH only. Cycle I: The Relevance Cycle: For this cycle, we conducted six focus group sessions with PLWH (N=50) ages 1859 and three focus group sessions with HIV care providers (N=30) to identify the desired content, features, and function of a mobile app for PLWH. Results of this work are reported elsewhere16. Thematic analysis of the focus group session revealed five categories of functional requirements: My Information Management, Managing My Medication, Staying Healthy, Communication (divided into provider communication and peer communication) and Resources. Participants suggested some of the following tools and functionalities for inclusion in a mobile app for meeting their health needs: reminders/alerts, lab tracking, notes, chat boxes/forums, testimonials of lived experiences, personal outreach, games/virtual rewards, coding of health tasks, and simulation on how to disclose their HIV status. Cycle II: The Rigor Cycle: The rigor cycle guided our selection of theories and methods for designing and evaluating the Design Document 17. We conducted a systematic review of existing studies, which used mobile technology and e-Health applications for HIV treatment and care. In addition, we did an ecological scan of the existing mobile applications that are already frequently used by many in our study population. Cycle III: The Design Cycle: Develop/Build: The goal of this cycle is to improve the design and to increase the likelihood of technology acceptance. The design cycle is sub-divided into two phases: Develop/Build and Evaluate. Our activities reported in this paper focus on the Develop/Build phase, which centers on the creation of a highly usable artifact. To achieve the goals of this cycle, we incorporated findings from the earlier parts of our study. These include a list of content, features, and functions from the focus groups, as well as findings from the literature review. We used user-centered distributed information design methods 14 and participatory action research methods 15 for the development of our user-centered participatory design session activities. We conducted two design sessions; each successive design session was developed based on the information gathered in the previous design session. Methods Design Session I: Sample For our first design session, we recruited five PLWH who had previously participated in our focus group sessions. We had two male and three female participants whose ages ranged from 39-59 years. Two participants reported their ethnicity as being Latino and three participants reported their race as African American. One participant had never used a smartphone. For their participation, study subjects were given $25 and provided lunch as a token of appreciation for their time. Procedures The first design session was audio recorded and lasted approximately two hours. Study team members were present during the session and took notes. The goal of this session was to identify optimal features for improving HIV treatment and management needs of PLWH. Using the findings from the focus group sessions we developed an initial list of content, features and functions. During this session, participants discussed topics and did not look at existing apps or prototypes. For this session, we did not benchmark with other apps so as not to remove the creativity out of the intended purpose of the design session. We asked participants to imagine each of the broad categories, identified from our focus group analysis, as a separate screen on a mobile app. We presented this information in a PowerPoint as a starting point as we sought to identify the functional requirements for a prototype of a mobile app. We presented the categories derived from our focus group sessions to the participants and asked them to discuss the content and features that would be included as functionality in a mobile app. Participants were encouraged to revise the information presented and discussion was stimulated by a set of probing questions, including: What information do you need from a mobile app related to your treatment regimen? What would make some of the current apps that you use better? The study team met and coded the transcripts and notes from the design session to inform the content (What) and features (How) of the mobile app.
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Results Results from the first design session are categorized by topic area, derived from the Cycle I focus group sessions, and reported in Table 1. In addition to the content and features, participants also identified usability factors which would make it more likely for them to use this app. Participants mentioned it would be important not to have too many screens to access information. In addition, participants noted the user interface as well as the information presented should be “simple and straightforward.” Finally, participants stressed the importance of confidentiality and privacy, reinforcing the critical need of passwords to ensure the information in the app was secure.
Table 1. Results from Design Session I Topic Area What Lab results HIV and all My Information lab work Management Information on non HIV medications Managing Your Medications
Medication information
Medication reminders
Medication tracker Staying Healthy
Diet/Nutrition Exercise Harm reduction Measuring risk Mental health Condom information STD information
Communication
Provider-patient communication
Peer communication Resources
Support group locations Condom distribution locations Latest HIV news
How Lab tracker Quick search feature for medications Health-related to-do list for HIV positives Information on which medications need to be taken with or without food, and specify the type of foods Provide generic and brand names of medications Medication Interactions Visuals of medications with information on why to take it Provide specific times, not just twice a day; the specific hours one dosage should be from the next Medication refills Missing doses chart; how it would affect the efficacy of the medication, and the risk of not staying undetectable Food log/diary Calorie tracker Measure physical activity Pre-Exposure Prophylaxis (PrEP) Risk calculator Stress reduction measures Information about types and sizes of condoms Games must be sensitive to users - i.e., brain or light bulb with big eyes and bubble pop ups with information Virtual lectures given by providers Face-to-face communication with provider Able to share/send information with provider Virtual support groups with providers Digital audio recorder Role playing videos Social networking links Voice activated “siri” GPS mapping GPS mapping and information on distribution sites Newsfeeds
Design Session II: Sample For our second design session, we had six participants, all of whom participated in the earlier focus group sessions. However, only three had participated in the first design session. We had 3 male and 3 female participants whose ages ranged from 39-59 years. Two participants self-identified as Latino and four participants identified as African
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American. Five of the participants were smartphone users. Of those participants who used a smartphone, social networking apps were the most frequently used applications. Procedures We audio recorded this session, which lasted approximately 100 minutes. The goal of the second design session was to gain information about the user interface so that prototypes could be created at the end of this design session. The investigator who ran the design session helped the end-user participants sketch a user interface of the desired mobile app. In this session, we presented the findings from the first design session as categories along with pictures of existing apps. Sticky post-it boards, size 25”x30”, were posted on the walls of the room. Each post-it board was designated for one of the topic areas listed in Table 1. Participants were asked to identify the components to include under each topic area. The same broad categories were used as in the first design session, reported above. Once again, participants were reminded that each of the categories would be a screen on the app and were asked to describe the content, features and interface they would want to see in an app. After participants shared their ideas, we asked probing questions to stimulate discussion about the existing apps and the need for refined content, features, and interface design. The questions were: What information do you need from a mobile app related to your treatment regimen? Which information from your healthcare visits should be viewable on your app? Participants were asked to identify app preferences including platform and design requirements, navigational features, and marketing preferences.
Figure 2: Sample Apps for Medication Reminders and Tracking
Following these questions pictures of existing apps were presented. Sample apps are in Figures 2 and 3. Participants were asked to comment on the features and interface of the existing apps.
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Figure 3: Sample Apps for My Information Management
Results Participants made suggestions on the content as well as the interface of their desired app. Participants commented on the existing apps and described which features have the potential to work well for them. Moreover, participants identified features and interfaces, which were confusing and would not meet their needs. Importantly, participants had mixed views on whether they would want their app to be used as a communication tool with providers. Most participants said that they would want to be able to communicate with peers for support as well as share HIV information and other resources. While the participants reviewed and commented on the existing apps, the design session leader sketched designs of the app on post-it boards so the participants could visualize the app. For each of the broad categories, a user interface was sketched. Sample sketches are in Figure 4.
Figure 4: Sketches of Managing Your Medications and My Information Management Screens
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Findings from the design sessions informed Cycle III: The Design Cycle: Build. Based on the results of the white board design, a final user interface for the prototype system was developed. We developed a low-fidelity prototype of user interface screens using a Web development tool based upon the results of the design sessions. The design sessions’ findings provided information for drafting formal functional requirements, which will be refined during prototype evaluation prior to inclusion in the Design Document. The prototypes of two screens in our build phase can be found in Figure 5. These prototypes mirror the sketches presented in Figure 4. In addition, findings from our design sessions informed the creation of a map of the screen order of the mobile app. Use of a low-fidelity prototype will enable us to explore and understand our potential end-user’s preferences related to content functionality (e.g. a calendar to record an appointment for HIV testing), as well as their ability to achieve tasks associated with the prototype content (e.g., scheduling a reminder in a calendar).
Figure 5: Mock-Ups of Medication Reminder and Lab Results Screens
The goal of Cycle III: The Design Cycle: Evaluate in order to improve the design, and to increase the likelihood of technology acceptance. To achieve this goal we will evaluate the user interface and system functions of the prototype and assess whether they are consistent with the end-users’ needs. We plan to conduct two types of usability assessments: 1) a heuristic evaluation using informaticians with experience in interface design, 2) and enduser usability testing with PLWH. Discussion To achieve the goal of designing a mobile app for meeting the healthcare needs of PLWH, we used the ISR Framework to inform our design processes in order to build an artifact for further testing. 18 The design sessions
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were an iterative process whereby study participants were considered the experts and teachers, and the investigators were the learners. The study participants contributed to the design ideas, provided feedback regarding effective interfaces, and explained which aspects of mobile interfaces, functions, and tasks they found appealing. With increasing evidence related to the use of mHealth for improving and managing health conditions, there is recognition that scientific methods are needed to help determine how best to use mobile platforms for delivering health information. In this paper a detailed description of a novel user-centered methodology integrated with a rigorous theoretical framework is provided. Frequent interactions between developers and end-users have been noted to result in positive project outcomes. Therefore, rigorous development with end-user input is critical for the development of mHealth tools 19. Using the ISR framework to guide our study design, we used qualitative methods, focus groups followed by enduser design sessions, which allowed us to develop an end-user perspective and not rely on the researchers’ assumptions about what is important. Based on the premise that an app designed from an end-user perspective is more likely to support user needs, we applied user-centered approaches to design the content, features, and interface for a mobile app for PLWH. Limitations Our research focused on a single geographic area with a small sample of PLWH. Additionally, the age of those who participated in the design session activities (ages 39-59) was higher than the identified target group, adolescents and young adults. Even so, our design session activities were informed by our findings from the focus group sessions, which included a representative sample of adolescents and young adults. This paper focuses on the process for designing a mHealth app. Further evaluation is necessary to determine whether adopting this theoretical framework for system design will improve usability and patient outcomes. The next steps for this work include a rigorous usability evaluation. Future work should also focus on the impact of a mHealth app designed through rigorous user-centered designed methods as compared to many currently available patient support apps which were not developed using a rigorous user-centered design approach. The findings from our design session must be considered in context of the limitations of our study. Nonetheless, this work introduces a framework of system development that is perhaps more systematic and comprehensive than the development process adopted for many existing health systems. The methods that we developed and refined may be useful to others who are designing mHealth technology tools and developing HIT tools for chronically ill patients. Conclusions For this work, we used user-centered distributed information design methods and participatory action research methods to identify the mobile app design preferences of PLWH. Our novel approach of integrating design science and user-centered qualitative methods is unique to the design and evaluation of mHealth applications. Given our focus on design specifications from the end-user perspective, findings from this work have the potential to result in sustained use and long-term appeal for PLWH. Acknowledgments This publication was supported by a cooperative agreement between Columbia University School of Nursing and the Centers for Disease Control and Prevention (1U01PS00371501). Rebecca Schnall is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant Number KL2 TR000081, formerly the National Center for Research Resources, Grant Number KL2 RR024157. William Brown III is supported by NLM research training fellowship T15 LM007079 and NIMH center grant P30 MH43520. Jasmine Travers is supported by an award from the National Institute of Nursing Research of the National Institutes of Health (R01NR013687, PI: P.W.S). The findings and conclusions in this paper do not necessarily represent the views of the Centers for Disease Control and Prevention.
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