The HEAAL Project: Applying Community-Based Participatory Research (CBPR) Methodology in a Health and Mental Health Needs Assessment With an African Immigrant and Refugee Faith Community in Lowell, Massachusetts.

Community-based participatory research methodology is driven by community interests and rooted in community involvement throughout the research process. This article describes the use of community-based participatory research methodology in the HEAAL project (Health and Mental Health Education and Awareness for Africans in Lowell), a research collaboration between Christ Jubilee International Ministries-a nondenominational Christian church in Lowell, Massachusetts, that serves an African immigrant and refugee congregation-and the Massachusetts General Hospital Department of Psychiatry. The objective of the HEAAL project was to better understand the nature, characteristics, scope, and magnitude of health and mental health issues in this faith community. The experience of using community-based participatory research in the HEAAL project has implications for research practice and policy as it ensured that research questions were relevant and meaningful to the community; facilitated successful recruitment and navigation through challenges; and can expedite the translation of data to practice and improved care.

What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease.

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a "SCD expert provider". In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an "unaffiliated patient" with SCD and to define an "SCD specialist," as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is "someone who has not been seen by a sickle cell specialist in at least a year." A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having "knowledge" means: being knowledgeable of the 2014 NIH Guidelines, "Evidence-Based Management of SCD", trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years." The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care.