A question of trust: user-centered design requirements for an informatics intervention to promote the sexual health of African-American youth

J Am Med Inform Assoc. 2013 Jul-Aug;20(4):758-65. doi: 10.1136/amiajnl-2012-001361. Epub 2013 Mar 19.

Abstract

Objective: We investigated the user requirements of African-American youth (aged 14-24 years) to inform the design of a culturally appropriate, network-based informatics intervention for the prevention of HIV and other sexually transmitted infections (STI).

Materials and methods: We conducted 10 focus groups with 75 African-American youth from a city with high HIV/STI prevalence. Data analyses involved coding using qualitative content analysis procedures and memo writing.

Results: Unexpectedly, the majority of participants' design recommendations concerned trust. Youth expressed distrust towards people and groups, which was amplified within the context of information technology-mediated interactions about HIV/STI. Participants expressed distrust in the reliability of condoms and the accuracy of HIV tests. They questioned the benevolence of many institutions, and some rejected authoritative HIV/STI information. Therefore, reputational information, including rumor, influenced HIV/STI-related decision making. Participants' design requirements also focused on trust-related concerns. Accordingly, we developed a novel trust-centered design framework to guide intervention design.

Discussion: Current approaches to online trust for health informatics do not consider group-level trusting patterns. Yet, trust was the central intervention-relevant issue among African-American youth, suggesting an important focus for culturally informed design. Our design framework incorporates: intervention objectives (eg, network embeddedness, participation); functional specifications (eg, decision support, collective action, credible question and answer services); and interaction design (eg, member control, offline network linkages, optional anonymity).

Conclusions: Trust is a critical focus for HIV/STI informatics interventions for young African Americans. Our design framework offers practical, culturally relevant, and systematic guidance to designers to reach this underserved group better.

Keywords: African Americans; Consumer health informatics; HIV/STI prevention; culturally informed design; social networks; youth.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Black or African American*
  • Consumer Health Information*
  • Female
  • Focus Groups
  • HIV Infections / prevention & control
  • Humans
  • Male
  • Medical Informatics
  • Reproductive Health
  • Sexually Transmitted Diseases / prevention & control*
  • Trust*
  • Young Adult