Establishing a National Engagement Strategy for Recruiting Asian Americans and Other Minorities into Biomedical Research.

BACKGROUND: The All of Us Research Program seeks to advance precision medicine and reduce health disparities by recruiting people in demographic categories that are underrepresented in biomedical research. Asian Americans, Native Hawaiians and Pacific Islanders are the most understudied of all racial/ethnic groups in the United States. We propose a national engagement strategy for the recruitment of Asian Americans, Native Hawaiians and Pacific Islanders into biomedical research using a community-based participatory research approach. METHODS: We partnered with Asian serving community-based organizations across the United States to increase education and awareness and developed a culturally and linguistically tailored approach for the engagement of AANHPIs into All of Us Research Program. RESULTS: In the first year, our national engagement strategy reached more than 35,000 AANHPIs through promotional events and educational sessions. CONCLUSIONS: Our success is a result of our equal and mutually beneficial partnership with community-based organizations who have access to rich, local knowledge and hold a unique role within the community.

Health-related quality of life for adults living with hepatitis B in the United States: a qualitative assessment.

BACKGROUND: In 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not decades of regular monitoring to prevent liver complications from occurring. The aim of this study was to explore the working conceptual framework of health related quality of life (HRQL) for those living with chronic HBV through qualitative analysis. METHODS: Data were collected by in-depth telephone interviews conducted in 2019 using purposeful sampling as part of a disease understanding assessment on the HBV patient experience within the United States. A directed content analysis approach was utilized by creation of a codebook to guide the organization of data, codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All transcripts were analyzed by at least two members of the study team and intercoder reliability was assessed using Dedoose software. FINDINGS: A sample of 19 individuals living with chronic HBV were included within this study. Themes identified from transcripts noted the significant overlap between the reported experience of HBV and constructs within the HRQL model. The psychological impact of chronic HBV on study participants' HRQL overall was considerable and contributed to depression, anxiety, homelessness, drug use, and incarceration. CONCLUSION: Our analysis supports the hypothesis that HBV impacts HRQL and often negatively affects emotional health. Our findings suggest that it would be beneficial to include HRQL assessment in the medical management of HBV, so that interventions can focus on reducing the burden of disease and improving quality of life for those living with HBV.

Cure everyone and vaccinate the rest: The patient perspective on future hepatitis B treatment.

Those living with chronic hepatitis B virus (HBV) require years, if not decades, of regular monitoring to prevent liver complications from occurring. An estimated 292 million people were living with chronic HBV globally in 2018 with approximately 2.4 million of those residing within the United States (US). This study is one of the first of its kind that aims to explore the treatment preferences for those living with chronic HBV through qualitative interviews. Participant data were collected by in-depth telephone interviews using a semi-structured discussion guide. A codebook guided the organization of data, and codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All data transcripts (N = 19) were independently double coded. Overarching themes identified from the data specific to the treatment modalities and implications of a functional HBV cure included the concern about side effects, treatment modality, frequency, duration, cost-effectiveness and overall impact on their lives. Qualitative data analysis revealed the significant impact that an HBV functional cure would have on quality of life. Benefits of a cure were described as not having a finite course of treatment, improving overall vitality, and reducing the fear and anxiety associated with lifelong infection and potential development of liver cancer. Many individuals expressed the desire for a cure for HBV, stating it would be life-changing, and a 'miracle'. As new therapies are in development, more research should examine in detail the treatment preferences of those living with HBV.

"Know Hepatitis B:" A Multilingual Communications Campaign Promoting Testing for Hepatitis B Among Asian Americans and Pacific Islanders.

The "Know Hepatitis B" campaign was the first national, multilingual communications campaign to promote testing for hepatitis B virus (HBV) among Asian Americans and Pacific Islanders (AAPIs). This population comprises fewer than 5% of the total U.S. population but accounts for more than half of the up to 1.4 million Americans living with chronic HBV infection. To address this health disparity with a national campaign, CDC partnered with Hep B United, a national coalition of community-based partners working to educate AAPIs about hepatitis B and the need for testing. Guided by formative research, the "Know Hepatitis B" campaign was implemented in 2013 with a two-pronged communications strategy. CDC used available Chinese, Korean, and Vietnamese media outlets on a national level and relied on Hep B United to incorporate campaign materials into educational efforts at the local level. This partnership helped facilitate HBV testing among the priority population.