Patient-centered Design: the Potential of User-centered Design in Personal Health Records

by Margarita Morales Rodriguez, BS; Gail Casper, RN, PhD; and Patricia Flatley Brennan, RN, PhD, FAAN, FACMI

Engaging consumers in the design and evaluation of personal health records helps develop tools they’ll use.

Consumers have available to them a wide range of personal health information management tools, often called personal health records or PHRs. The variety and quality of information delivered in these tools will determine how useful consumers find them.

Equally important will be how the information is delivered. The ability of PHRs to truly meet the needs of individuals depends in part on how well product designers attend to the needs and wants of users and how extensively they engage users in PHR design and testing.

User-centered design (UCD), also known as human-centered design, is a formal approach to ensuring that new tools like PHRs incorporate the needs, wants, skills, and preferences of the user throughout the tool’s development. UCD is a design and evaluation process that pays particular attention to the intended users, what they will do with the product, where they will use it, and what features they consider essential.¹

Presently UCD is not widely employed in PHR development; occasionally, user satisfaction surveys are conducted after the implementation of finished systems. But user-centered design is a natural fit for the kind of patient-centered healthcare that PHRs represent. Project HealthDesign, funded by the Robert Wood Johnson Foundation and the California HealthCare Foundation, will result in nine user-centered PHR applications, which in the near future could shed some light on the impact user-centered design could have in the area of PHRs.

UCD at Work

UCD has shaped products all around us. The nub on the number 5 key of a cell phone comes from user-centered design. User testing helped designers know that the nub at the top of the key was better than the bar above it in anchoring an individual who was dialing without looking at the device.

In aviation, UCD applied to the development of “cockpit navigation displays for low-visibility surface operations” helped nearly eliminate navigation errors and improve airport efficiency by considering the “limitations and capabilities of the flight crew,” according to the research.² UCD can provide similar insights into PHR design, beginning with elements as simple as text colors and typefaces that individuals find easy to read. In healthcare, UCD helped tailor a smoking cessation program for inner-city women that featured computers.³

The full benefits of UCD are likely to occur when user input is incorporated early in the design and evaluation. Engaging an elderly patient, a middle-aged mother of six, or a teenager with diabetes early in the design and evaluation process ensures that their reactions shape development according to what is really important to them.

Mock-ups and prototypes can provide an effective and interactive way to demonstrate to the intended user what is being developed and solicit direct feedback from them. Allowing diabetic patients to use a prototype of a food calculator to determine meal choices, for example, ensures that their feedback is based on real experiences.

UCD techniques, such as usability testing, can be employed throughout the entire design and evaluation process, from requirements gathering to early prototyping to the final evaluation. By using these techniques early, the design requirements and scope will be better specified.

Withholding these techniques until the evaluation phase is wasteful of both the respondents’ time and the designers’ efforts. Modifications introduced early are less costly than even minimal changes to the final product.⁴ In UCD, designers employ these techniques several times with progressive refinements. This iterative approach ensures that users’ needs and wants are met and ultimately increases the likelihood users will accept the final product.

Primary Focus on the Primary User

UCD usually focuses on a product’s primary user. In contrast, PHR design to date has focused almost exclusively on the perspectives of others, such as providers and payers. Widespread use of PHRs will depend in part on better engagement of consumers, their primary users.

By considering the skills, needs, and preferences of primary users, UCD can inform content selection, such as weight and blood pressure data. It can help identify which processes to automate or not automate, such as obtaining values from an electronic health record. A PHR linked to a physician’s electronic record system could, for example, automatically populate the patient’s weight from the provider record. However, some users may prefer to input their weight themselves. They could be motivated by a desire for more current data or the ability to observe changes more frequently by weighing themselves and recording the value at specified intervals. UCD helps keep the technology flexible by enabling designers to focus on the tools and functions desired by the intended users and determine the tasks users want to perform and those they would prefer the technology do for them.

PHRs also need to incorporate the perspectives of secondary users, such as clinicians. UCD can facilitate the tasks that multiple users want to accomplish and when and where they will use the tool. Clinicians, for example, may review the contents of a PHR to determine how a patient responds to a medication. In this case the data may be self-reported by the patient, but it must be recorded and presented in a manner accessible and useful to the physician.

UCD can be time consuming and expensive, but attempts to save time and money by foregoing it can be illusory. As noted, modifications made early in the design process are usually less expensive than even small changes made late. Using expert’s opinions in place of those of the users, for example, may be less expensive initially, but it may prove more costly in the long run.

Involving the intended user from the beginning, as UCD prompts designers to do, ensures a final product that will be accepted by them. Although there is some research on PHRs that may aid developers in determining user preferences, there is much to be gained in the active involvement of users in every step of the design and evaluation process. PHRs will greatly benefit from a design and evaluation approach whose purpose is to ensure an acceptable and useful end result that meets the expectations and needs of the users.

Notes

1. “Human-Centered Design Processes for Interactive Systems.” International standard ISO 13407 ISO; 13407, 1999E. [Processus de conception centrée sur l’operateur humain pour les systeémes interactifs]. 1st ed. Geneva, Switzerland: International Organization for Standardization, 1999.
2. Hooey, B. L., D. C. Foyle, and A. D. Andre. “Integration of Cockpit Displays for Surface Operations: The Final Stage of Human-Centered Design Approach.” SAE Transactions, Journal of Aerospace 109 (2000): 1053.
3. McDaniel, A. M., G. R. Casper, S. K. Hutchison, and R. M. Stratton. “Design and Testing of an Interactive Smoking Cessation Intervention for Inner-City Women.” Health Education Research 20, no. 3 (June 2005): 379–84.
4. “Human-Centered Design Processes for Interactive Systems.”
5. Ibid.

Margarita Morales Rodriguez (memorales@wisc.edu) is a doctoral student in the Department of Industrial and Systems Engineering, University of Wisconsin-Madison, Wisconsin. Gail Casper is a researcher in the School of Nursing, University of Wisconsin-Madison. Patricia Flatley Brennan is a professor in the Department of Industrial and Systems Engineering at the University of Wisconsin-Madison.

This work was supported in part by Graduate Engineering Research Scholars and funding for Project HealthDesign provided by the Pioneer Portfolio of the Robert Wood Johnson Foundation and the California HealthCare Foundation.