Developing Self-Management Tools with Vulnerable Populations for use in Personal Health Information Management Systems

Abstract

Vulnerable populations have potential to be significant partners and informants in the development of health information technology. We describe our experience in conducting human-centered participatory design methods with community-dwelling elders in the development of a computer-based falls prevention self-management tool for use in a personal health information management system. Community-dwelling elders contributed significantly to understanding appropriate content and functions; task performance; and graphical representations that should be considered in designing our self-management tool. Design participants should include those who have and have not experienced the clinical condition being considered during the process of system development. Knowledge transfer between system developers and community members about health and personal safety issues can be facilitated through human-centered participatory design methods.

Introduction

The incidence of falls and injuries in communities is increasing globally, particularly among individuals over the age of 65 years1. The consequences of a fall often includes skeletal fractures, head injuries, admissions to an extended care facility, heightened fear of falling, as well as financial losses2,3. The most recent Cochrane review of interventions for preventing falls among older people in communities revealed mixed results for trials investigating the effectiveness of multifactorial interventions4. Seven of the studies focused only on older people presenting to the emergency department after a fall, and only two of these, revealed effective interventions in preventing falls. These effective interventions involved intensive multidisciplinary assessment. It remains unknown whether such intensive programs can be realized on a large scale. Moreover, researchers have reported that the link between effective falls prevention interventions can be mediated by an individual’s falls self-efficacy5. To this end, community-dwelling elders might benefit from computer-based support systems that can help them to self-manage, monitor, and share their day-to-day falls prevention related activities.

The Internet is increasingly used for personal health management6. As use of the Internet becomes more widespread among all age groups, access to health-related information via the Web has the potential to facilitate self-management of expected changes in health status over the lifespan (e.g. loss of muscle mass) or chronic disease status (e.g. hypertension). Vulnerable populations, such as the elderly, frequent users of health care services, and family caregivers may be principal beneficiaries of personal health information systems (PHIMS)7. Electronic PHIMS can include personal health records, web-based patient portals, and social network tools such as Facebook and Twitter. PHIMS could assist individuals manage their encounters with health care services and execute healthy behaviors, which might reflect a sense of empowerment. This may only be possible when potential end-users are actively engaged in the development process of computer-based support tools. Community-dwelling elders may have much to gain from a PHIMS that supports personal health information management as well as tools that support health maintenance and falls-related self-management.

In this paper, we describe: (1) the systematic participatory design approach implemented among community-dwelling elders for the design of a computer-based PHIMS falls preventions self-management tool, Self-Assessment via a Personal Health Record (SAPHeR); (2) the important contributions made by community-dwelling elders were used in the initial development of the SAPHeR tool; and, (3) the design challenges that were considered during the development of the SAPHeR tool.

Participatory Design Methods and Activities

Preparatory Work

A system such as SAPHeR requires the involvement of community stakeholders. Our first step was to identify a community-based organization (CBO) that would be willing to partner with us to facilitate recruitment of community-dwelling elders as study participants. Additionally, we created a partnership with the university affiliated healthcare network that makes available a PHIMS to clients at the CBO and all patients who access the healthcare network. We met with our CBO partner over a series of meetings and established the rules of engagement in our partnership. The most significant result was an understanding that the relationship would be based on mutual respect of resources and human capital. Next, we approached the development of the SAPHeR design methods from a perspective of shared understanding of falls prevention and risk. To this end, a set of focus groups were conducted with community-dwelling elders to learn about their experience with falling and associated injuries, as well as their knowledge of falls prevention and risk.

Recruitment and Sample

For all methods described in this paper, Institutional Review Board approval was obtained. We collaborated with the Assistant-Executive Director of our CBO partner to recruit community-dwelling elders to participate in all of the development phases of the SAPHeR tool. There were a total of 24 community-dwelling elders who agreed to participate in the study. Informed consent was obtained by study investigators before the conduct of focus groups and design sessions. Two participants did not attend either of the focus groups and there was little attrition among design session participants. Our 22 study participants (i.e. 12 men, 9 women, and 1 unreported) self-identified being from various racial groups: 45% White, 23% Black, 18% More than 1 race, and 14% unreported. Additionally, across all racial categories, 45% of the study participants self-identified as Hispanic.

Procedures

Focus groups and participatory design sessions were held in the community, as well as at the CBO Senior Center. Before conducting a series of 4 participatory design sessions (n=8), two focus groups were conducted with 7 participants in each group. Our interactions with the community-dwelling elders were scheduled to last 90 minutes. Each successive design session (i.e. 2 – 4) was developed based on what we learned from the previous design session(s). Our understanding of the knowledge gained during design session 1–3 was shared at the beginning of design sessions 2–4, and feedback was encouraged from study participants. Participants were encouraged to attend all of the design sessions.

We adapted human-centered distributed information design methods8 and participatory action research methods9 for the development of our human-centered participatory design session activities. The design sessions proceeded as an iterative process whereby study participants were considered the experts and teachers, and the investigators were the learners. The study participants contributed to design ideas, provided feedback regarding effective interfaces, and explained which aspects of computer interfaces, functions, and tasks they found appealing. Our design sessions included but were not limited to the following activities: multiple choice selection of falls prevention activities using flash cards, low-fidelity prototyping, observation, video- and audio-taping and note taking, as well as designing static interfaces using poster-paper, adhesive, and printed images.

Design Sessions

The first design session included three activities to learn more about potential user requirements of a computer-based falls prevention tool. The purposes of these activities was to understand (1) what falls prevention activities are judged as useful and feasible to perform, (2) the extent of Internet use, and (3) the cues related to Website “stickiness” among our study participants. A variety of techniques were used in these activities; including interactive feedback using flash cards, open dialogue, and browsing the Internet, respectively.

In the second design session, we focused on what content and functions should be included in the SAPHeR tool. During the first activity, study participants were encouraged to configure the appearance of the SAPHeR homepage using poster-paper, adhesive, and paper images. Then, using the PHIMS available to our study participants, a series of functions (e.g. visual aids that accompanied textual information, instructional videos, or a menu of options) were displayed and participants were encouraged to describe what was desirable or undesirable about each function.

The aim of the third design session was to gather information about our study participant’s ability to describe and perform Web-based tasks. In the first activity, using a low-fidelity prototype developed from the poster-paper platform configurations, study participants were asked to describe how they would perform a set of activities. In the second activity, each participant was asked to perform a task within the PHIMS and Google Calendar, ranging from viewing or inputting personal information to scheduling an event.

We concluded our design sessions by exploring the suitability of a graphical interface that was created based on the three previous design sessions. The activities were constructed to elicit internal and external perceptions of information presented via a high-fidelity prototype10. First, participants commented on the representation of the textual information, including font size and type as well as color, of the interface. Next, participants considered whether images that were paired with textual information conveyed the meaning of the text. Participants were encouraged to elaborate and make suggestions when the image was not a good match for the textual information. Finally, the group was given written instructions on how to perform an exercise activity and asked to sketch a drawing based on the instructions. Everyone was given 15 minutes to complete the task. Participants also described how this activity might be performed. Next, everyone was given the opportunity to perform the activity. Interestingly, not everyone was able to perform the activity. Finally, we showed an animated graphics interchange format of the physical activity and asked for feedback about this representation.

Community-dwelling Elders’ Contributions

Platform Configuration

Our study participants contributed directly to the platform configuration of the SAPHeR prototype. They had many practical suggestions that the investigators alone might not have thought useful in the design of the SAPHeR tool. Figure 1 shows an example of a poster-paper SAPHeR homepage configuration constructed by two study participants. The top banner (i.e. MyNYP.org, etc.), which was prescribed with a black marker by the study team, mirrors what a user of SAPHeR would see when they login to navigate the PHIMS to access the SAPHeR tool. The other six items in the figure were arranged by the study participants. We provided the graphical images (i.e. “CAUTION WATCH YOUR STEP” and textual instructions) in the form that was suggested by study participants or that already existed in the other PHIMS self-management tools. The study participants arranged the graphics in a manner they found not only appealing but also logical based on their use of other Internet Websites. They also provided suggestions in writing with red markers of other content they would prefer or expect see when they login to the SAPHeR system. Some of these suggestions included falls prevention tip-of-the-day, a search field to identify “in- and out-of-network” health care services, and a function to access local and/or personal pharmacy services.

Figure 1.

Example of a poster-paper SAPHeR platform configuration

Content Functionality, Task Performance, and Graphical Interface

The practical insight we gained from the platform configuration activity informed the development of a low-fidelity prototype. Figure 2 is a screenshot of the low-fidelity prototype we created based on the knowledge gained from design sessions one and two. This low-fidelity prototype enabled us to explore and understand our potential end-user’s preferences related to content functionality (e.g. a calendar to monitor physical activities), as well as their ability to achieve tasks associated with the prototype content (e. g. scheduling an activity in a calendar). One of our most significant findings was end-user’s expressed need for a simple system that could contain interactive functions, including instructional videos and a personal calendar, which they had limited ability to use. For example, the majority of the participants could not complete the task of starting, pausing, and stopping a web-based video. Therefore, the challenge was to identify how to present these potentially complex functions in a simple format.

Figure 2.

Low-fidelity prototype developed for use in design session three

Among the many design ideas that emerged from the main theme of self-management, the idea endorsed by the majority of our study participants was the use of images to communicate important textual descriptions (Figure 3). The study participants suggested that images could provide informational cues to descriptive textual information. For example, an image of an older person who appears to have fallen at home might be related to educational information about the hazards associated with falling at home. The prototypes that were created throughout our design sessions allowed us to evaluate whether we understood the needs of our potential end-users.

Figure 3.

Hi-fidelity prototype developed for use in design session four

Design Challenges

Real World Context and Users

We anticipate that SAPHeR will have an array of users; including community-dwelling elders who are healthy overall, those who have and have not fallen, as well as fallers with alterations in healthy aging. We explored with our study participants their ability to use Web-based functions through a variety of alternative ways to achieve certain tasks (e.g. use of the mouse or the keyboard to select links). The development of SAPHeR was based partly on our understanding of the limitations that older individuals may face when using the Internet to browse the Web.11 SAPHeR has been designed to be used in homes and communities via personal computers. This suggests a defined set of real world user requirements. Therefore, the technology will be static for many users who have access to the Internet at home and/or some other predefined locations (e.g. family member’s home or community center).

Developmental Factors

Older adults have varying attitudes related to the risk of falling and the need to take part in activities that reduce their chances of falling at home or in the community12. These perceptions and attitudes are not necessarily age dependent. In our study, some of our older adults perceived an absence of risk compared to younger study participants who had already experienced a fall. Moreover, we learned that level of computer use and internet experience varied across study participants. There is significant value in including a wide cast of potential end-users as part of the development of a computer-based prevention tool for the aging and the use of participatory action and human design principles are an essential aspect of system development.

Engaging Elders in Computer-based Falls Prevention Activities

The purpose of the SAPHeR tool is to help community-dwelling elders monitor their confidence in performing day-to-day activities and engage them in managing their environment and physical activities. Research indicates that older adults perceive the risk of falling as obvious and at the same time deny personal risk while maintaining a desire for an active, competent, and independent lifestyle and identity13. It is important that SAPHeR not only provide an way for community-dwelling elders to engage in self-management but also focus on the immediate benefits of strength, balance, and stability training, which have been reported as reasons for continued engagement related to improvement in mobility, health, confidence, mood, and interest and enjoyment12. Whether community-dwelling elders will engage in repetitive use of SAPHeR remains to be seen. A feasibility study is planned and will examine the relationship between falls self-efficacy14 and the use of the SAPHeR tool within a PHIMS.

Discussion

There are several important observations from developing a self-management tool for use in a PHIMS with community-dwelling elders. In our project, community-dwelling elders or potential end-users of the SAPHeR system were involved in every phase of system development. This was critical given the systematic iterative scheme of our human-centered participatory design sessions. As teachers, community-dwelling elders were very clear about what they liked/disliked about a web-based computer system, and why. A test of our understanding will be the development of usable system for potential end-users. Based on activities carried out in the design sessions, community-dwelling elders contributed significantly to understanding (1) appropriate content and functions; (2) task performance; and (3) graphical representations that should be considered in the design of the SAPHeR system.

However, because our community-dwelling elders had training and experience in computer and Internet use, the design of the SAPHeR system could be too advanced for community-dwelling elders who are late majority and laggards of computer and Internet use11. While the foci of our design sessions were on system development, good design for community-dwelling elders at risk of falling should also incorporate robust knowledge of falls prevention. Based on the goal of the SAPHeR system, to help community-dwelling elders monitor their confidence in performing day-to-day activities and engage in managing their environment and physical activities to avoid falling, we had to make sure that we could make available evidence-based interventions that could be used by potential end-users. Therefore, we paid special attention to integrating the range of computer experience of our study participants, actionable information that informed the creation of the high-fidelity SAPHeR prototype platform configuration and graphical interface, and evidence-based falls prevention resources available for use in the system.

A challenge in developing a self-management computer-based tool for feasibility testing was engaging community-dwelling elders who did not perceive any personal risk associated with falling at home or in the community. This was especially true during less interactive aspects of the activities (e.g. verbal feedback and/or descriptions versus artistic and manual computer use activities). Our experience is that when possible design participants should include those who have and have not experienced the clinical condition being considered during system development. We believe this encouraged creativity in the range of strategies and activities we used in our design sessions.

Conclusion

Based on our experience with developing a self-management tool for use in a PHIMS, vulnerable populations have potential to be significant partners and informants. It is equally important that vulnerable populations take part in evaluating computer-based systems developed for use in their communities. Moreover, this study has revealed that knowledge transfer between system developers and community members about health and personal safety issues can be facilitated through human-centered participatory design methods.