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Vivian Bliss, Joseph Busch, & Susan Golden

Designing for Values-based Information Seeking

Saturday, March 25 10:15 am – 11:00 am

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Session Summary

This session discusses our journey to discover values-based information seeking behavior. We use health care decision-making as the primary example, and identify a set of key design principles for enabling discovery and implementation of values-based user experiences.

Taxonomy Strategies spent almost a year developing a taxonomy to support consumers in making better health care decisions. From an information science perspective, this was an information seeking problem. From a health care perspective, this was a quality of care problem. But research shows that consumers are more interested in patient narratives than quality of care measures. In our project we reviewed query logs from a patient referral and consumer health information websites; we interviewed subject matter experts inside and outside of the government; and we conducted ad hoc interviews with people encountered in our research including health care professionals such as medical social workers, and friends and loved ones to elicit stories related to the health care decisions they help others make, or that they make themselves.

At the end of the project we delivered and validated a consumer-oriented health care taxonomy, but in our project post-mortem we realized that there was something intrinsically missing from the planned website content and design. Life events-based decision-making is made on criteria that are different from what policy makers focus on. For example, policy makers are concerned about delivering good outcomes in the most cost-effective way, while consumers are concerned about affordability—both criteria are related to cost but they are framed very differently. Worse, while people will watch a dozen videos when they are choosing a bicycle bell, following a diagnosis of stage 1 breast cancer they are typically handed one or two referrals to specialists and rarely consult more before getting radiation therapy.