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. 2020 Mar 4;2019:1177–1186.

Connected Personas: Translating the Complexity of Older Adult Personal Health Information Management for Designers of Health Information Technologies

Dawn K Sakaguchi-Tang 1, Anne M Turner 2,3,4, Jean O Taylor 2,4, Julie A Kientz 1
PMCID: PMC7153085  PMID: 32308915

Abstract

Human-centered design (HCD) can be used to communicate research study findings to designers of health information technologies (HIT). We used the HCD approach to develop personas, scenarios, and design guidelines for designers with the aim that it would lead to new HIT designs that support the autonomy and health of older adults. The foundation of the personas, scenarios, and design guidelines was a study that focused on understanding how older adults manage their health information and the role that stakeholders play in that process. In this paper, we describe how we carried out a HCD approach and how it led us to expand the persona process to create a network of connected personas. The connected personas allowed us to show the complexities of personal health information management for older adults and emphasize the importance of relationships with family, friends, and providers.

Introduction

Personal health information management (PHIM) is a process that includes creating, seeking, organizing, and sharing health information1. PHIM for older adults often also includes activities that are supported by family and friends2. Health information technologies (HIT), such as patient portals and fitness trackers, have been designed to help people manage their health and health information. However, use and adoption of health technologies by older adults has been slow in comparison to the use of general technologies like email and the Internet3,4. Human-centered design (HCD) and its methods have been embraced within the field of health informatics and used to develop technologies for patients5,6,7,8. However, there has been less work addressing the implementation of this approach, especially in regard to translating research study findings into artifacts for designers to use when designing HIT. In this paper, we will describe how we used an HCD approach to develop personas, scenarios, and design guidelines for designers creating HIT for older adults.

Background

HCD, also referred to as user-centered design, is an iterative approach that places impacted people at the center of the design process to ensure that the design and development of a product that is usable, meets people’s needs and goals, and addresses people’s challenges or pain points9. In health informatics, HCD has been advocated as an approach that can manage the complexity of health activities, such as the often invisible work of PHIM performed by older adults and their family members and friends10,11. HCD methods have been used to develop and evaluate health technologies for managing diabetes7, tracking health indicators5, and managing personal health records12.

A crucial goal of an HCD approach is gaining an understanding of people who are impacted by the designs, including end users and other stakeholders. Although this process is generally nonlinear, learning about the people involved— including their context, needs, and goals—is typically placed at the beginning of the process so that this knowledge can play a role in the design ideas and solutions9. There are a variety of artifacts that can result from HCD methods. For our project we chose to create personas, scenarios and design guidelines. Personas represent different people and their needs, and provide a sense of their behaviors, attitudes, needs, and goals in specific contexts13, 14, 15. Personas are developed from user research, using methods such as interviews, observations, and surveys13.

Personas aim to create a common language for designers, to encourage empathy for stakeholders, and to help designers understand stakeholder goals13,16. Personas include elements such as the name of the individual they are describing, a photo of the individual, demographic information, personal goals, pain points (e.g., challenges), and a description of the individual’s use and comfort with technology. Personas often include a scenario or narrative, that illustrates the context surrounding the individual and features their goals, challenges, and experiences with a technology13.

Personas have been used and studied in a variety of contexts. In the field of health informatics, personas have been used to raise awareness of a particular population8 and to translate study findings to inform the design process of health information systems8. Studies seeking to understand how designers use personas in practice found that personas were often used in the initial stages of the design process as a communication tool within a team, to introduce new team members to their stakeholder groups and to help the team avoid making assumptions about their stakeholders17,18. Personas have also been used to communicate with broader stakeholders, like others within the organization but outside of the project team, about the people using a system18,19,20.

Although the persona method is popular, it has not been without criticism. Some of the main critiques have been that it is difficult to trace persona details to specific data and validate personas using scientific methods18,21,22. In addition, some have argued that the persona method is limited in addressing the complexity of managing health and health information10. Our study addresses these limitations with a modification of the persona method to accommodate the complexity of PHIM in the context of older adults. As described in this paper, we used findings from an extended study of older adults and their supportive networks to develop an expanded and connected set of personas, demonstrating the web of supportive relationships surrounding a central person’s PHIM processes. This set of connected personas provides a fuller picture of the older adult’s needs and experiences, providing information about the role that family, friends, and providers play in the older adult’s PHIM. In addition to connected personas, we developed evidence-based design guidelines to support the design process for HIT for older adults. The process of guideline development and modification through user and expert feedback is also described below.

Methods

This work is a part of a larger project called SOARING (Studying Older Adults & Researching Information Needs and Goals)23. It is a 5-year project at the University of Washington, funded by the Agency for Healthcare Research and Quality (AHRQ). SOARING seeks to deepen understanding of how older adults manage their health information and the role that family, friends, and providers play in that process. Its overall aim is to improve HIT for older adults to support their health and autonomy. To address these goals, the SOARING study design was based on the Balance Model, an ecological model which takes into consideration the role of social, organizational, technological influences in carrying out specific activities, in this case older adult PHIM24. As a part of SOARING, we conducted a qualitative study to investigate the health information management practices and needs of adults 60 years and older who lived in a variety of living situations (i.e., independent living, retirement communities, and assisted living). We conducted in- depth interviews with 88 older adults, 52 of their family and friends, and 27 health care providers25,26. Results from this research served as the foundation for the development of the personas, scenarios, and design guidelines.

The persona, scenario, and design guideline development effort was led by a small group of researchers from the SOARING team. We implemented a HCD approach to create these design resources. We refined the personas, scenarios and design guidelines through an iterative process with older adults and designers, as well as through feedback from subject matter experts. Subject matter experts included members of our SOARING team who have expertise in geriatrics, health informatics, nursing, medicine, biostatistics, and human-computer interaction. Figure 1 provides an overview of our HCD approach.

Figure 1.

Figure 1.

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Overview of our human centered design approach

HCD 1.1 Persona Process

We used SOARING study data from the interviews conducted with older adults, family and friends, and providers to draft each set (i.e., older adults, family and friends, providers) of personas. Once we drafted each set of personas (i.e., older adults, family and friends, providers) we sought feedback from our subject matter experts on the accuracy and completeness of the content and the design of the persona. After each feedback session, we incorporated the feedback in an iterative fashion into modifications of the personas. We held at least five feedback cycles for each set of personas - this included in-person meetings with the individual team members and a group of subject matter experts, as well as individual reviews where the personas were sent to the subject matter experts who provided in-document comments. As a result, we created six sets of connected personas.

HCD 1.2 Design Guideline Process

The aim of the design guidelines was to provide a list of design considerations that would apply specifically to health information technology for older adults and complement the connected personas. To develop the guidelines we drew from the diverse perspectives of HCD designers, older adults, and subject matter experts. We first invited undergraduate and graduate students from the Human Centered Design and Engineering (HCDE) department at the University of Washington to participate in an applied class of developing the design guidelines. We introduced the students to the SOARING project and its findings, as well as to the connected personas. Throughout the quarter, we asked students to brainstorm a list of preliminary design requirements using the personas and through sketching design ideas of health information technologies. Based on this work, students helped to prepare video scenarios of the design requirements to show to older adults in focus groups (Figure 2).

Figure 2.

Figure 2.

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Video Scenario. This set of slides illustrates the video scenario of two design requirements that allows older adults with the opportunity to choose who they share their health information with

We next conducted three focus groups with older adults living in senior living communities and facilities to gain their feedback on the preliminary design requirements. Prior to the start of the session, participants completed a demographic questionnaire. Each session was facilitated by a SOARING researcher and observed by a student or a member of the SOARING team. Three students observed the first focus group, a SOARING researcher observed the second focus group, and one student observed the third focus group. All focus group sessions were recorded. Participants received a handout for each video scenario so they could follow along and take notes. Scenarios were used as discussion prompts to discuss and obtain feedback on preliminary design requirements. After each video, participants were asked whether the scenario resonated with their experience and their perspectives on concepts such as sharing and privacy.

At study completion, the field notes were coded by a two researchers (DST, MX) using thematic analysis. We used the videos to support our analysis and to verify the themes. We shared the design guidelines draft with the subject matter experts, and modified them based on their feedback. We had at least four feedback cycles.

HCD 1.3 Study with designers

We conducted a two-part study with designers to understand their perceptions of the connected personas in comparison to individual personas. We also wanted to understand how designers would use the connected personas in their design process. We conducted two sessions with designers. In the first session, designers worked in groups of 3-5 people and were asked to brainstorm ideas for a design challenge. The design challenge asked designers to design for this question: “How might we help older adults balance receiving support in managing their information related to their health and maintaining independence?”

To compare the designers’ experience between an individual persona and connected personas we used a three phased approach where the groups worked first with just the older adult persona and then were given the connected personas. The designers were then given all six sets of personas consisting of the primary older adult personas and their connected personas. The designers from the first session were invited to the second session. In the second session, designers worked in groups to prototype ideas for the same design challenge from the first session. In addition to the family of connected personas, the designers were provided with the design guidelines to inform their ideas.

All of the sessions were video- and audio-recorded. We also observed the groups and took notes. The groups reported their experiences throughout the design session through feedback forms with open-ended questions. The designers also produced sketches of their ideas and prototypes. Each designer completed an exit survey at the end of every session

After the sessions, four researchers (DST, KK, AT, YW) conducted a thematic analysis by reviewing the first session video recording. As a group, we reviewed the emerging themes and identified themes code in the rest of the video data. Each researcher reviewed a set of video recordings coded for the themes and transcribed those parts of the video. Then, three researchers used affinity diagramming to organize the themes. One researcher (DST) triangulated the themes with the data from the group discussion feedback forms and individual exit surveys, while being open to additional themes that emerged.

Results

The HCD methods we used guided us through an iterative process that was based on study data, informed by feedback from subject matter experts, evaluated by older adults and designers, and supported by academic literature and published information from organizations. This process provided the space for discussions about the complexity of older adults’ PHIM and led to influential decisions about the personas and design guidelines. We discuss below some of the decisions and evaluations that occurred through using a HCD approach, including the emergence of connected personas, outcomes from focus groups that evaluated the design guidelines, and designers’ experiences with both the personas and design guidelines.

HCD 1.1 Drafting personas and emergence of connected personas

We started by following the typical persona development process. Our goal was to develop a set of “stand-alone” personas that represented the different experiences of older adults and their family members, friends, and providers. We segmented the older adult personas based upon their living situation because we learned that it had a significant impact on the ways that older adults practiced PHIM2,22. For example, older adults who live in an assisted living facility manage their personal health information differently than older adults who live in a private residence. Older adults who live in an assisted living facility may rely on a variety of staff to gather and store their health information documents (e.g., after-visit summaries), while older adults who live in private residences may keep and file their documents on their own. Other parameters that distinguish the older adult personas from each other included health conditions, their organizational style, and the people in their lives that support their PHIM2,25.

For our first feedback session of the family and friends personas with subject matter experts, the family and friends personas were each drafted as individual personas. Since they were stand-alone personas, the format was similar to the older adult personas. However, as the subject matter experts reviewed these personas and reflected on their knowledge of older adults and related PHIM research, conversations emerged acknowledging that although the personas were representative of individuals, they did not illustrate the connective nature of the network of people who support the older adults in PHIM. We had gained a deep appreciation of this important aspect of older adult PHIM through embedding the SOARING interviews with family and friends into the ecological framework of The Balance Model24. This model led us to take an integrated approach to consider older adults’ tasks, tools/technologies, social/organization systems, and the physical environment. Family, friends, and providers played a significant role in the ways that older adults organized, managed and shared their personal health information. Representing the older adults and friends and family in a traditional stand-alone fashion could not adequately capture the rich interconnected nature of these relationships, and the design needs that arose from these connections. As a result, we decided to break from the typical persona method of individual persona groups, and to instead create connected personas.

In order to effectively describe the supportive role of connected personas, we changed the persona layout. The connected persona became one page, with the content focusing on the ways in which each stakeholder supported the PHIM of the older adult they were connected to. Each set of personas features an older adult in a different living situation (i.e., independent residence, retirement community, assisted living, etc.) and connected personas of family and friends and/or providers. Each persona within a set contains a scenario. The older adult scenario describes their current situation in terms of their health, their relationships with the people they are connected to, and with health information technologies, specifically patient portals. Similarly, the scenarios for connected personas (family and friends, and providers) illustrate a viewpoint on their relationship with the older adult and the ways they want to, or do, support the older adult. It also illustrates the goals and challenges they face related to their role in the older adult’s PHIM.

The final result of HCD 1.1 was six sets of personas, with each set featuring an older adult persona as the primary persona and connected personas of family and friends as well as providers who play a role in the older adult’s PHIM (See Figure 3).

Figure 3.

Figure 3.

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Older adult person, Paula Private and Connected personas: Henry Husband and Felicia Family Physician

HCD 1.2 Development of Design Guidelines: Impact of older adult and subject matter feedback

The design guidelines were informed by the SOARING interviews, by the personas, and by feedback from older adults and subject matter experts. Below we present themes from the focus groups and feedback from subject matter experts that influenced and shaped the design guidelines. The guidelines encourage designers to consider PHIM-related needs (i.e. issues that might arise as an older adult is managing health information) and user experience needs (i.e. considerations for the use of the health information technology itself). For example, a PHIM-related guideline for family members of an older adult is, Escalate support: Specifically consider tools that will allow older adults to plan for situations in which they may need extra help or full support from family and friends to manage their health and health information. An example of a user experience need is, Design for diversity: Consider approaches like inclusive design to reach people across a wide range situations and with differing abilities. All of the design guidelines were based upon the SOARING findings, academic literature and national organization websites.

To investigate whether our design guidelines resonated with older adults and explore additional design considerations, we conducted three focus groups with older adult participants. In total, 21 older adults participated in the focus groups. The average age among participants was 79 years old. Most participants were female (76%) and a majority identified as white (95%), with a college degree or higher (71%). Most older adult participants reported using a computer on a daily basis (71%) and about half (52%) described their computer experience as being at an intermediate level, meaning between some experience and very experienced. In addition, about half (52%) of participants said that they were using patient portals.

Several themes emerged from these focus groups: keep it simple, support autonomy, balance between maintaining privacy and ease of use, and recognize the diversity among older adults in their use of, and attitudes toward, information technologies. These are described in more depth in the following paragraphs.

Some participants said that they expect that it should be easy to find information and complete tasks using health information technologies. One participant plainly stated, “keep it simple”. This theme also included the ability to understand information, and the suggestion that technologies should avoid using jargon and unfamiliar medical terms. During our sessions, we showed a video that demonstrated features like adjusting size of the text by using icons and buttons. Some participants noted that they were unfamiliar with some of the icons and with some of the terms.

“When I go to my patient portal, it is very simple. That’s what I want. I don’t have to hit all these buttons.” (Participant A, Focus group 2)

“The buttons should be labeled.” (Participant B, Focus group 2)

Another theme expressed was that technology should support autonomy. Several participants resonated with the scenario which described family members requesting access to the older adult’s health information. However, they also expressed that older adults should be able to choose who can have access to their health information. One participant acknowledged the challenge between maintaining autonomy and being safe.

“It’s difficult to maintain autonomy and control privacy and get the help you need. Some people are more willing to give that up than others.” (Participant, Focus group 1)

A third theme centered on the balance between maintaining privacy and ease of use. Ease of use arose as an issue in discussions about logging into a system. Participants expressed their frustrations with remembering passwords. Some participants offered ideas for password solutions, such as using a fingerprint, facial recognition, and voice assistant. However, the importance of privacy also came up in these discussions.

“I object to the idea of using the SSN (social security number), I’m not convinced that it’s safe.” (Participant, Focus group 3)

Although our primary discussions in the focus groups were about the guidelines for HIT, some participants voiced the need to recognize the diversity among older adults in their use of, and attitudes toward, information technologies. Four participants from two focus groups expressed a concern about technology taking away existing services or making those services difficult to use.

“My big concern is that I know a lot of people are like me. They don’t want to use a computer. They don’t want to use a smartphone. They just want to talk to someone. What do we do with those people who cannot get a hold of anybody? There has to be a way.”(Participant, Focus group 2)

In addition to guidelines generated from our own studies, where appropriate we incorporated existing guidelines and best practices for designing for this population and supporting the design of health information technologies. Resources used in the guideline development process include information from published reports, and organization websites like the Pew Research Center3, Bureau of Labor Statistics Occupational Outlook Handbook27, Center for Disease Control and Prevention (CDC)28, Alzheimer’s Association29, Web Accessibility Initiative guidelines30 and plainlanguage.gov31. We were thus able to address the diversity and range of technology experience among older adults and the importance of involving older adults in the design process. We also used academic literature for creation of the development of the design guidelines32,33,34,35,36. The final result of HCD 1.2 was a set of 37 design guidelines.

HCD 1.3 Assessment: Designers’ experiences with the personas and design guidelines

Our final stage was to provide both the connected personas and design guidelines to a group of designers. There were several themes that came from our two-session study with designers about their experiences with the connected personas and design guidelines. One of the themes was that the connected personas provided designers with a holistic perspective of the older adult and of the problem space. Another was that designers refined their designs to include family, friends, and providers. Although the connected personas were positively received, there were also room for improvement. For example, designers were overwhelmed by the amount of information they had to digest and organize across the six sets of connected personas.

A total of 16 designers participated in the study. In general, the connected personas were well received by designers. A primary benefit of the connected personas expressed by designers was that it provided them with a broader perspective on the older adults’ situation and problem space. It also cultivated empathy for the older adult. They suggested that providing an overview summary of each set of personas with key information, or a video summary about each persona set, would be helpful. They also expressed that the design guidelines were useful and helped them to prioritize their design ideas.

Discussion

This paper outlines our use of a HCD approach to translate and synthesize study findings into design materials in the context of designing HIT for older adult PHIM. We described our development and evaluation of connected personas and design guidelines for designers. Our approach involved close collaboration with SOARING researchers, feedback from subject matter experts, and insights from both older adults and designers. This work supports prior research in health informatics that has translated study data into personas7,8. It also acknowledges the limitations of traditional personas to convey the complexity of health information10 by challenging the persona method to accommodate the complexity of PHIM for older adults. This work builds on prior work the expands the persona method to accurately describe user groups, their needs and behaviors37,38. Connected personas incorporate the insights we have gained from taking a holistic approach to investigating older adult PHIM through application of the Balance Model, which considers the individual in the context of the their tasks, tools and technologies, environment and organizational structures24. Through utilizing this holistic framework, we observed crucial PHIM needs within the connections between older adults and their family, friends, and providers that would not easily be communicated with stand-alone personas. Our personas needed to reflect this complexity because it was essential to the practice of PHIM for older adults. If we had developed traditional personas of individual older adults, we would lose valuable information that only rises out of the relationships between older adults and their social networks.

In using a HCD approach, we found it to be flexible and robust, allowing us to help designers navigate and appreciate the complexities of older adult PHIM. HCD methods have been advocated in health informatics as a way to design and evaluate health information systems that are informed by users, as well as their needs and behaviors39,40. Using a HCD approach provides researchers with a method to translate and communicate complex processes that are critical to the work people do and are necessary for HIT design.

We found that designers appreciated the connected personas and found them to be useful to their design process. We also learned that the connected personas led designers to broaden their perspectives on the users of HIT beyond older adults, to include considerations for the older adults’ family, friends and providers. This finding indicates that the connected personas were successful in communicating the complexity of older adults’ PHIM. Overall, this study demonstrated that using connected personas has the potential to stretch the boundaries of the typical persona method to more accurately represent users and their context. This method may be useful on other complex areas of healthcare in which a variety of roles influence activities, such as care management for children with disabilities41 and patients undergoing cancer treatment42.

Limitations

Our personas and design guidelines are meant to provide information about older adult PHIM that should be considered in the design process of HIT. We did not focus on a particular HIT or explore other activities beyond PHIM. Our results may not be generalizable to other technologies, activities or contexts. We created our connected personas and design guidelines independently from a team of designers. Prior studies have found that designers who are not involved in the development of personas may not use them to make design decisions43,44. Research into the use of these personas in actual practice is needed.

Conclusion

In this paper, we described how using a HCD approach lead to the development of connected personas and design guidelines for designers of HIT to better meet the needs of older adults. This approach allowed us to synthesize study findings about the complexity involved in the ways that older adults manage their health information. In particular, we were able to illustrate the importance of relationships to supporting older adults with their PHIM. Through feedback from designers, we learned that the connected personas were useful in communicating the complexity of PHIM for older adults, and led designers to consider the connections between older adults, their family, friends and providers related to PHIM in their design ideas. Overall, the connected personas and design guidelines helped designers to dive into a greater understanding about older adults and their PHIM. Having this knowledge will lead to HIT that meets the needs of older adults and as a result is used and adopted by older adults.

Acknowledgments

This work was supported by funding from AHRQ #R01HS022106. This material is also based upon work supported by the National Science Foundation (NSF) Graduate Research Fellowship under Grant No. (DGE 1256082). The findings and conclusions expressed here are those of the authors and do not necessarily represent the views of AHRQ and NSF. We want to thank Selena Xu and Maria Medina for their hard work in creating the personas. We also want to thank the students who participated in developing the design guidelines as well as Alyssa Bosold for editing this manuscript.

Figures & Table

Figure 4.

Figure 4.

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Family of connected personas

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