Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities.

OBJECTIVE: To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR). DATA SOURCES: Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health. DESIGN: Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants. DATA COLLECTION: Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities. PRINCIPAL FINDINGS: Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation. CONCLUSIONS: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.

Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations.

OBJECTIVE: We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research. MATERIALS AND METHODS: We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases. RESULTS: Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements. CONCLUSIONS: Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.

'I make sure I am safe and I make sure I have myself in every way possible': African-American youth perspectives on sexuality education.

High rates of youth pregnancy and STIs play a major role in the physical, mental, and emotional health of young people. Despite efforts to provide sexuality education through diverse channels, we know little about the ways in which young people perceive school- and community-based efforts to educate them about sexual health. Forty-eight African-American young people participated in six focus groups to discuss their sexuality education experiences. Three major themes emerged that highlight experiences and perspectives on optimal strategies for promoting sexual health. These themes were: 1) experiences with school-based sexuality education (SBSE); 2) seeking information outside of schools; and 3) general principles of youth-centered sexuality education. Young people in the focus groups expressed their varying satisfaction with SBSE due to the restricted content covered and lack of comfort with the instruction methods. Participants described how they reached outside of SBSE for sexuality education, turning to those in the community, including local organisations, health care providers, and peers, also expressing variability in satisfaction with these sources. Finally, participants identified three important principles for youth-centred sexuality education: trust and confidentiality, credibility, and self-determination. These findings give voice to the often-unheard perspectives of African-American young people. Based on their responses, it is possible to gain a better understanding of the optimal combination of school, family, peer and community-based efforts to support them as they move towards adulthood.

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

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.

Drama and danger: the opportunities and challenges of promoting youth sexual health through online social networks.

Social networks affect both exposure to sexually transmitted infections (STIs) and associated risk behavior. Networks may also play a role in disparities in STI/HIV rates among African American youth. Accordingly, there is growing interest in the potential of social network-based interventions to reduce STI/HIV incidence in this group. However, any youth-focused network intervention must grapple with the role of technologies in the social lives of young people. We report results of 12 focus groups with 94 youth from one economically depressed city with a high STI/HIV prevalence. We examined how youth use information and communication technologies (ICTs) in order to socialize with others, and how this aligns with their communication about sexuality and HIV/STIs. The study resulted in the generation of five themes: distraction, diversification, dramatization, danger management and dialogue. We consider implications of these findings for future development of online, social network-based HIV/STI prevention interventions for youth.