How patient participation designed a medical app

Why patient-centered feedback and participation in the design process is so essential to the long-term success of a patient's treatment.

One challenge facing patients, clinicians and the complete health care team comes after percutaneous coronary intervention, a procedure where a cardiologist takes pictures of the arteries that supply blood to the heart. (Many people have heard the more common term for this, cardiac catheterization.) If a blockage is severe enough, a metal spring called a stent is inserted to open it and prevent future blockages. However, if patients receive a special stent called a drug-eluting stent (DES), they are required to take medication for at least one year. If they stop the medication, the risk of death, repeat cardiac catheterization, heart attack or return of symptoms increases significantly. To address this challenge, a team created an app to help patients better understand why the medication is so important.

Our team considered two different development methodologies, user-centered design and user participatory design, to find a solution. User-centered design has been around the longest and because of its popularity, the International Organization for Standardization (ISO) has come up with a multipage standard for developing new software programs, new cars or new “things” in order meet the needs of users or clients.

In general, software has become more intuitive. Within mobile health app development, a number of software programs have incorporated user-centered design. For instance, there is a difference between using the fitness app while you’re running as compared to standing still, riding a bike or countless other athletic activities. User-centered design sometimes includes detailed research into the psychology, demographics and financial status of users who might interact with the product.

After research about specific users is complete, the engineering team develops the program. During the process, engineers and project managers consider the requirements of the specific project. After development, the team returns to user testing, which can include eye-tracking software, think alouds and additional user metrics to evaluate how individuals use or think about the technology. If the developer does not understand user needs and if user needs are not met by the technology, then the development effort could be a failure.

Our specific problem, medication adherence (taking medications correctly), is a multifaceted challenge that each patient approaches with different barriers to taking the medication as prescribed. While the reasons for not stopping medication, especially for cardiac catheterization, have been well researched, the methods for medication adherence are still an active area of research. After a significant amount of research and thought for the application, our team recognized that the barriers for medication adherence in patients could not be achieved by traditional user-centered design. We needed to involve the patients in the design process.

Participatory Design

Another idea is to involve user participatory design to address some of the weaknesses mentioned above. User participatory design engages the individual user for software, mobile app or patient education during the design process. The patients are part of the team, either employed by the company or attending regular meetings. The patients become design partners in the endeavor. For many of the challenging aspects of health care, understanding patients’ responses to application is critical. In patient education, patient engagement and mobile app development, user participatory design is almost a requirement.

Within the first month of development using the patient-centered design process, our multidisciplinary health care team reached out to five patients who were willing to talk with us about the importance of medication adherence and novel ways of engaging patients. Our team consisted of cardiologists, nurses, nurse educators, pharmacists, informaticians and biomedical illustrators. The purpose of the project was to address the fact that failure of medication adherence leads to six to nine times greater risk of death after a drug-eluting stent. The only modifiable risk factor after receiving a drug-eluting stent is patient education and engagement.

When we had an outline of the concept, patients who had undergone a percutaneous coronary intervention and received a drug-eluting stent were involved in the development. While the patients were not experts in medication adherence, they had all experienced the procedure and challenges of medication adherence. From the initial development and engagement of patients, we reorganized the outline of the application. The insight and knowledge provided by the patients helped us develop the educational software in the application.

The program we developed was built using the Kolb learning experiential theory in order to help meet the multiple styles of learners. The level of detail within the individual application also was resolved through discussions and collaborations with multiple health care providers as well as the patients. Novel ideas that were part of the original proposal were thrown out as the patients rightly asked: “How does this relate to increasing medication adherence?”

The program the patients helped develop is called My Interventional Drug-Eluting Stent Educational Application (MyIDEA). The initial analysis of this mobile educational app has been very positive: people with an average age of 60 were able to successfully navigate a new tablet-based educational program within the hospital and again at the follow-up cardiology appointment.

The engagement of patients and end-users who experience the relevant challenges is critical to the success of future projects, especially with medication adherence and behavioral modification. User participatory design does not mean the users design everything, but users are allowed to mold, craft and change ideas, providing a much more powerful development tool than most of the existing software.

Andrew Boyd is an Assistant Professor of Biomedical and Health Information Sciences at the University of Illinois at Chicago.

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