Twenty years ago, Peter Szolovits and colleagues proposed a digital “Guardian Angel” built on the notion that information systems designers might shift focus from serving health institutions to empowering the individual patient [1]. The Guardian Angel (or digital health advisor) would collect individual patient data, monitor health conditions, interpret health information for patients, help customize treatment plans, share information with the care team, and provide reminders and alerts about medications and appointments. With recent technological advances, the capacity to create a digital health advisor is now within reach, but it has yet to emerge. One barrier to the development of a digital health advisor might be the lack of a clear set of requirements to inform its design. Although there are a range of tools that perform some related functions and a few studies that cover some needs, they have not been presented in a way that is actionable for developers [2]. The Commonwealth Fund, a foundation whose goal is to improve access to health care, has been exploring this opportunity through its program on the information technology (IT)-enabled consumer. The fund has a particular interest in models of care for high-need, high-cost (HNHC) patients and ways to enhance coordination as well as patient and caregiver engagement [3]. We sought to determine how the concerns of HNHC patients and their caregivers might be met through digital tools in order to communicate this to the stakeholders who can create and distribute these tools. This paper describes this strategy, highlighting the use of persona development and an illustrative prototype to engage key stakeholders in order to promote the creation of a digital health advisor for the people who could derive the most benefit.

Information and communication technologies (ICTs) have transformed many industries, often by reconfiguring services around the needs of consumers. But health care has lagged behind. Many of the current consumer-facing applications target people who are relatively healthy [4]. There has been less focus on the 5% of the population who account for nearly 50% of all system costs in the United States and in other regions [5]. These HNHC individuals often have multiple chronic conditions and are more likely to be lower income and face housing and food insecurity [6-9]. They are poorly served by a health system built around diseases and institutions that often results in fragmented and competing care [10,11]. Among population segments, frail elderly are the most likely (46.2%) to be high cost, followed by adults under 65 years with disability and adults with major complex chronic disease [12]. They all have to engage in a variety of activities to improve their health [13,14], and digital technologies may be able to assist. As the largest subgroup, seniors are increasingly adopting technology, with 76% using cell phones, 64% using computers, 43% using the internet, and 40% using email and texting [15]. They are already engaging with some of these new approaches in health care: 16% of seniors search the internet to obtain health information, 8% to fill prescriptions, 7% to contact physicians, and 5% to handle insurance matters [15]. However, while there are more than 165,000 health apps currently available, a 2016 review found that most available digital tools for chronic disease are piecemeal, have limited functionality, and do not address the needs of patients with complex chronic conditions [4,16]. Furthermore, a review of evaluations of apps for conditions associated with higher needs found that most studies were small and few assessed process or outcome measures [17]. Another review compiled proposed functions from different studies and highlighted that tools should be developed with user needs in mind [2].

Human-centered design (HCD) has been used to develop many transformative ICT solutions, is routine in a range of industries, and is increasingly applied in health care [10,18-27]. HCD is a problem-focused method that emerged from the fields of industrial design and (more recently) software development [28-30]. Strengths of design thinking include rapidly developing a deep understanding of user needs and then communicating them in ways that are emotionally engaging and actionable. This approach often involves interviews, observation, and immersion in a user’s context to develop user personas, or archetypes, and use cases [22,27]. A persona is a detailed description of a fictional person (often a composite of real individuals) used to communicate the key motivations, concerns, and interests of a user group [10,26,27]. Related to the persona is a use case or user story, which is a story with a plot describing the actions and decisions of a user in a particular context [26,27]. These representations can help designers foster empathy, better understand user needs, and develop new service options and tools [26]. Persona development has been used in a number of studies, but they have focused on specific chronic conditions (eg, older adults with diabetes [31], heart disease [32,33], or multiple sclerosis [34]) or groups like high users of the emergency department [35]. One study created personas of the “oldest old” but focused on implications for the design of computer interfaces [27]. None of these studies looked at a range of HNHC patients, and none were focused on designing a general tool to help achieve patient goals like the digital health advisor.

The Commonwealth Fund was interested in developing a vision of a digital health advisor that could meet the needs of HNHC patients and using this to encourage its development in the health care marketplace by developers, entrepreneurs, investors, health system providers, funders, and regulators. The Fund worked with the design firm gravitytank to identify the needs of HNHC patients and their caregivers and create a low-fidelity prototype, which simulates key features of interest to this group without building out any of the functions [36,37]. This involved interviews with experts, 8 patient-caregiver pairs of people with multiple chronic conditions or frail elderly, and mapping the workflow of 3 care managers with similar patients [36,37]. Based on analysis of these data, a rough prototype of a digital health advisor was created and shared with patients and caregivers so they could provide feedback on the usability and functionality of the tool. This informed different outputs to make the insights more actionable.

The concept of a comprehensive digital health advisor for patients, which was proposed more than 20 years ago, is now technically feasible and attractive to HNHC patients in the United States. The patients highlight a range of functional, emotional, medical, and personal needs that might be addressed by this tool. They also list a series of key functions such as tracking, advice, providing a holistic picture of themselves, and coordination and communication. The use of human-centered design helps overcome the limitation that new designs in health care are often dreamed up by providers to be easy to implement but not necessarily use by people who rarely use health services and don’t resemble the people they are trying to help. Personas can promote stakeholder engagement by providing detailed information on patient needs and how a tool might address those needs, making it easier to understand key functions, possible interactions with the health system, data requirements, and potential regulatory concerns.

While some studies have employed human-centered design to develop tools for patients with multiple chronic conditions [39,40], this approach tends to be applied to specific populations (eg, people with diabetes) [26,41,42] or specific uses (eg, communication, monitoring) [43,44]. Our work supplements the findings of a recent review of mobile technologies for older adults that summarized the following design features from different articles: graphs; notification systems; text and video messaging; scheduling; and vision, hearing, and memory aids [2]. Even though there are many digital health tools on the market, few comprehensively address the needs of HNHC patients and even those tend to focus on medically defined needs rather than act as general advisors. To go from an understanding of needs to a functioning tool that meets those needs in the context of someone’s life is a stretch and it involves testing different use cases, functions, and target groups before finding a good fit. The personas and prototype helped elicit specific advice from providers, payers, regulators, developers, and investors by making the problems and options more tangible. This highlighted the range of challenges with trust, uptake, integration with workflows, value proposition for different stakeholders, and potential business models, going beyond a narrow focus on end user needs and features of the technology.

The learnings from this project about current HNHC patients could be applied to vulnerable populations at risk of becoming HNHC patients (another target group for the Commonwealth Fund) and even the general public. We found the highest users of the health system are interested in tools that can help them manage their health challenges but even more in helping them live their lives to the fullest. This is likely to be true of all patients, who not only value disease management but also see health as a means to identify and work toward their life goals. An individual’s health is intertwined with their psychological, social, and economic context, and truly useful digital tools will help people manage their needs in a comprehensive and integrated way rather than focus on a disease or issue in isolation. This has not been a major goal for health systems or a major focus of quality improvement efforts; however, it could be supported by consumer-facing tools that engage and empower individuals.

Characterizing the needs of target users is essential to designing a comprehensive digital health advisor, but to realize this vision we need to address broader system and policy constraints that will impact its development. User-centered design can help draw attention to something that is technically feasible but has no business model and may not be compatible with many current regulations. It helps reframe problems and suggest solutions that may be independent of existing services or processes. In the area of models of care for HNHC patients, the Commonwealth Fund has commissioned rigorous evaluations of new models, synthesized evidence from the scientific literature, and created a playbook for health systems to help implement promising models and improve care for this group. We have also started using design thinking as a tool to generate a pipeline of new options that might constitute a breakthrough. We move this future-oriented work forward through our role as a convener and advocate for improving access to care. For the IT-enabled consumer, the next steps include exploring the type of collaboration needed between stakeholders such as health care delivery organizations, patients, caregivers, technology companies, government, and consumer advocacy groups. We also need to examine the incentives and business models needed to attract entrepreneurs and developers to work in this area and for health systems to engage with consumer-facing IT tools. System change is unlikely to come from those who already run it, so the Commonwealth Fund is working to address the policy and regulatory, business model, and cultural barriers to creating tools that put patients and their goals at the center of the health system.