CASE STUDY

National Institutes of Health (NIH)

The Precision Medicine Initiative’s All of Us Research Program

The All of Us Research Program, run by National Institutes of Health (NIH), is a historic effort to engage more than one million people to contribute their health information and build a diverse database that can be used to support biomedical research that improves our ability to prevent and treat disease based on individual differences in lifestyle, environment and genetics.

A Product and Service Ecosystem

One of the most challenging aspects of the program is that it is supported by an extremely complex ecosystem of touchpoints and that those touchpoints depend on many disparate technology systems that were owned and used by different partners and healthcare provider organizations. A task that I took on was to provide clarity into how the pieces were connected, creating a variety of visual representations of those connections.

Understanding Motivations

Motivations to join the study and continually engage with the program vary widely. For example, some participants, like the persona Martha that I created (see below), are indeed motivated to participate because these types of medical services would not be otherwise accessible. Others were motivated by more internal or personal reasons such as helping to advance research in an area that they or a loved one had been impacted by.

Journey

All participants’ journeys followed a high-level flow from being unaware of the program to being (hopefully) actively engaged in it. However, the way that occurs can unfold in many different ways. For example, the process of enrollment may be completely digital for one participant but for another, they may enroll at the a physical program site or healthcare provider where a person helps them through process. Or, they could go through the digital process at home but call the Support Center to receive guidance by phone. To complicate things further, the way that a participant enrolls heavily affects numerous aspects of their experience during the Data Donation part of their journey.

Enrollment and onboarding

The amount of effort a participants needs to put forth to fully enroll and onboard into the program is significant. They need to complete a complete an intensive informed consent process, answer questions about themselves, and make decisions about what types of data they will share, and possibly have laboratory samples such as blood and urine taken. Therefore, is a part of journey where good user experience design is particularly critical to the program’s mission.

Ongoing engagement

After this onboarding, the program needs to keep participants engaged. The main touchpoint for this ongoing engagement of participants is a healthcare portal that contains each individual’s health information. Participants can view the information they have shared, find results of laboratory analyses, and manage how their information is treated. It also serves as an “activity center” that surfaces to-do items and newly available participation opportunities. The aim to provide enough value, that participants remain engaged year after year.