Imagine you are an ambitious technology innovator keen on advancing health care in the digital era. You could have chosen another industry, but you select health care because you want to make a difference in people’s lives. You want to focus on helping patients manage their chronic conditions because you have observed from family and friends that, most of the time, chronically ill patients feel like they are on their own. They see their doctors for 15- or 20-minute visits every few months, which is not enough time to get all their questions answered. They are afraid of calling too often or sending too many messages because they do not want to bother their doctor, so they try to figure out most issues by themselves. You believe health care can be better because you see consumers in other industries such as travel, finance, shopping, and hospitality easily meeting their needs through digital tools that are directly supported by the industry, and these other industries continue to innovate rapidly. You want to help health care move in this direction.1,2

Since your mother has rheumatoid arthritis (RA), you are familiar with her struggles. She has been dealing with this condition for several decades and has seen many different rheumatologists over the years, but she continues to have disability and is not always sure where to turn when she needs help. She currently uses a patient portal offered by her rheumatologist to view appointments, see her laboratory data, and send messages to her care team. She also has downloaded a few smartphone applications (apps) to record her RA symptoms and to try to gain confidence with managing these symptoms, but her doctors do not recommend any particular mobile health app or source of educational information. During clinic visits, she asks some of her doctors about such apps, but the doctors do not seem interested in discussing them. As a result, she feels that the effort she is putting into the apps are disconnected from her care. After using an app for a while, she loses motivation and stops using it. She has tried asking questions to artificial intelligence tools, which provide well-written and convincing answers, but she is not sure if those answers apply to her, and she sees the disclaimers that say the answers may not be accurate. You want to help your mother and other patients with RA, so you decide to focus on rheumatology as your initial target for innovation. Where should you begin?

User-centered design methods supply a clear answer to that question: You start with the users.3 You get to know them. You learn about their experiences, their pain points, their preferences and attitudes. You observe, interview, survey, and engage them. In other words, you conduct what is known in the design world as “user research” to carefully define the problem that your technology is meant to solve.4-8 Importantly, user research involves collecting and analyzing data about more than the actual users—it also involves other stakeholders who can influence user needs and experience. It involves understanding the full context of the user experience. For example, user research into patients often means understanding the perspectives of their families, caregivers, clinicians, and healthcare organizations.

You begin your user research and start recording qualitative data. You talk with your mother and take notes. You find other patients with RA and talk with them also, in interviews or in focus groups. Quickly, you discover that RA is complex and one patient’s experience—your mother’s—may not be typical of others. Patients have flares at different frequencies and with different symptoms, severities, and functional limitations. Some have been managing their condition for years and have strategies for managing symptoms; others are struggling with understanding the basics. Some are on multiple medications with many side effects. Some medications require regular laboratory testing. Some have challenges accessing rheumatology care. You meet one patient who is not sure their rheumatologist is the right match for them and is considering finding another one.

You try not to become overwhelmed by the complexity. You know you cannot address every single need of every patient with RA. You need to define a problem and identify aspects of it that may have a technology solution. Based on your discussions with patients, it is clear they want more effective sources for education about RA, so that is a candidate target for a technology solution, but you are not sure if that should be the highest priority and you do not know which education topics to focus on first. At the suggestion of an academic researcher you met recently, you start to review the published literature to see if anyone has described the user needs of patients with RA in a way that can help you narrow your focus and find a place to start.

At this point, you likely become frustrated. You find in the literature a lot of clinical information about RA (eg, symptom measurement tools, medication information, epidemiology prevalence assessments) and many publications on digital solutions, such as smartphone apps, that claim to help with self-management and a few evaluations.9-11 However, there is little rigorous user research that characterizes the range of problems patients with RA face in a way that helps you determine where to invest your energy. You were hoping that someone had previously laid a better foundation for you and others who are trying to help patients with RA through digital innovation. Instead, you fear that you need to do this fundamental user needs assessment yourself.

The study by Nowell et al in this issue of The Journal of Rheumatology helps to address this gap.12 The authors identified educational topics that are of interest to patients with rheumatological and musculoskeletal disease and ranked these topics in order of patients’ priorities, noting differences between inflammatory conditions and osteoarthritis. They found that the highest priority educational topics were knowing when medications are not working, finding the right rheumatologist, knowing the side effects and interactions of available drugs, and understanding the test results to monitor the condition.12 They also found that substantial numbers of patients express interest in potentially using a smartphone app to view laboratory results and record symptoms or flares to track their health, among other features. Many patients who answered their survey used or planned to purchase a fitness tracker, which suggests opportunities to create digital innovations that leverage those devices.

The work by Nowell et al12 suggests many potential starting points for innovators and, just as importantly, identifies areas that are likely of lower priority because they are of interest to fewer patients. Upon reading this article,12 our innovator will likely begin brainstorming ideas for digital tools that could address the identified user needs, such as a medication education feature that summarizes typical signs of when medications start working, how symptoms should start to improve, and what kinds of side effects may occur, ordered by how common they appear, along with advice on what to do about them; a decision aid that uses a patient’s electronic health record data to locate a rheumatologist who is a good match for the patient’s needs; and an app that offers suggestions to the patient for what questions to ask their doctor at their next visit to explain the implications of laboratory results for their care plan.

Additional user research could be done to expand on this work and provide more ideas and direction for innovation. Enumerating and describing use cases (ie, scenarios in which a user may use a tool) in detail may help innovators focus on high-priority areas. For example, some use cases might involve a patient looking for a new rheumatologist. What are the needs of the user in this case? Who might they turn to for advice? What barriers do they encounter? Do different categories of users approach the situation differently? To design digital tools to help with this problem, these questions should be answered first. If the literature provided these answers, it would save innovators substantial time so that the problems could be solved faster.

After reviewing the study by Nowell et al12 and other studies assessing RA user needs,13-17 you, the innovator, are able to be more targeted and efficient. You understand that there is a difference between patient-stated preferences and revealed preferences (ie, actual choices and behaviors), and so you keep an open mind when doing additional user research. Now, however, you have ideas for what to do next and have increased your chances of addressing the needs of large numbers of patients with RA. You review some ideas you got from Nowell et al12 with your mom and other patients with RA. You find out that almost all the patients with RA have had challenges and anxieties with their medications. Consistent with the findings of Nowell et al,12 you learn that patients with RA often do not know if their medication is working for them. Further, they do not know what symptoms or side effects would suggest that they should call their rheumatologist. They also do not feel confident that they know what kinds of questions they should make sure to ask. You, our innovator, decide to focus on these problems. The user needs you learned from Nowell et al12 and your own user research will shape the next steps of the user-centered design process.

Digital innovation in health care is always going to be challenging, in part because the design space is complex. Research such as that of Nowell et al12 that simplifies the design space by identifying, characterizing, and prioritizing the problems can reduce the barriers for innovation, make innovation more systematic, and help health care catch up to other industries. This kind of foundational user research would help healthcare professionals and innovators more quickly achieve the goals that inspire them to work in health care.

DHS receives salary support from unrelated research contracts to his institution from Amgen, CorEvitas, Janssen, and Novartis; and receives royalty payments from UpToDate. The remaining authors declare no conflicts of interest relevant to this article.

See Patient app/educational priorities, page 904