Toolkit Menu
Standards of Engagement
Be Focused on PCOR & Patient Engagement
The organization must be committed to:
- Applicability (applying results) - meaningful consequences for patient quality of life and community health
- A focus on impact that we can measure
- Honoring commitments - “Doing what we say we will do”
- Ensuring clear expectations amongst stakeholders (including organizational leadership, personnel, and patients) and empowered, autonomous participation
What needs to be in place for the organization in general:
- Effective communication - internally and with patients/partners that is transparent and respectful
- Decision making process across organizational levels that is understood by all parties and represents a mutual effort
What needs to be in place when considering a particular research project:
- Adequate time and resources devoted to project (for both the organization and patients)
- Everyone (leadership and staff) understands the commitment to the funder and partners
- Discipline ourselves to ask the question “How does this strengthen patient empowerment, relationship with organizations, and treatment outcomes”
Be Grounded in Cultural Competence
The organization must be committed to:
- Adequate number and diverse Latino patient representation (not just token)
- Inclusion of Latino patients’ perspective and insights throughout the partnership (not just attendance)
What needs to be in place for the organization in general:
- Systematic stakeholder discussion - a system to bring together community, patients, providers and researchers at a given time to determine research questions, involvement, agenda, etc.
- Ongoing collaborative partnerships - in harmony with mission and goals of person or organization - not just a one-time project
- A common understanding of what PCOR is - through education & training - both for the organization and for patients, partner organizations & researchers
What needs to be in place when considering a particular research project:
- Meaningful representation of Latino patients and perspectives in the discussion
- Patient influence - understand how Latino patient participation influences research study design and results
Include a Plan for Sustainability of Efforts
The organization must be committed to:
- An ongoing relationship between all involved partners
- Developing infrastructure for facilitating ongoing research
What needs to be in place for the organization in general:
- Realistic consideration of costs - both direct and indirect
- Commitment to long term engagement with a trusted partner
- Protected time and space for research activities
What needs to be in place when considering a particular research project:
- Alignment with organization goals - clear understanding of how the project fits within larger organizational goals and works toward them in broader timeline
- Defined plan for transitioning from project to next phase of partnership toward ongoing goals
Show How Knowledge Is Improved
The organization must be committed to:
- Applicability (applying results) - meaningful consequences for patient quality of life and community health
- Accountability and transparency with research process
- Improved “translation” - sharing findings in a way that allows them to affect the world around us
What needs to be in place for the organization in general:
- A plan for giving ongoing research updates to everyone involved and applying feedback received
What needs to be in place when considering a particular research project:
- The development of the proposal and implementation of the project includes insights from patients and stakeholders
- There is a plan for dissemination and implementation
Assent: Permission from a participant under the age of 18 to partake in a research study.
Biosketch: a document required by most federal funding agencies from each key personnel as part of a grant or project application packet. A biosketch contains the person’s name, title, education/training, personal statement, positions and honors, contributions to science and additional information.
Certification Period (PT): budgeted time period of the project. Percent Effort (PE) is calculated during certification periods.
Community Behavioral Health Organization Serving Lations (CBHOSL): A behavioral community organization, with a non-profit or for profit legal status, that provides services to the Latino community.
Community-Based Participatory Research (CBPR): involves shared responsibility between community members, community organization leaders, and researchers in the development, implementation and dissemination for research.
Consent: Permission from a participant over the age of 18 to partake in a research study.
Cultural Competency: knowledge that accumulated through time about a community’s culture.
Incentive: Monetary and/or other compensation such as vouchers provided to research participants for their time and contributions to the research project.
Institutional Review Board (IRB): Groups of individuals who review and approve all research involving human subjects to ensure compliance with federal, institutional and ethical guidance. Researchers must obtain IRB approval before the start of any research project involving humans.
Latino: regardless of race, a person who identifies/shares with at least one aspect of Latin American culture such as a language or heritage. The United States Census refers to Latino/Hispanic as one ethnic group. The term Hispanic includes anyone of Spanish speaking heritage (e.g., Spain) and Latino includes anyone from Latin American heritage that includes Brazil. As the term Latino is more encompassing of the population generally found in the United States, we refer to it throughout this toolkit.
Latino Patient Researcher: a person in the community, who may not hold a leadership title, but is interested in community based research and co-championing a project. Ideally, this person would serve as a liaison between the community organizations and research partners, and would help increase buy-in from the community. A Latino patient researcher would also voice concern about the practically/applicability of study or methods to researcher stakeholders.
Letters of Intent (LOI): a brief summary delineating the goals of the project, why it should be funded, and the expertise leading the efforts. LOIs are required by some foundations and federal funding agencies prior to submission of an application. Generally, a biosketch is attached to the Letter of Intent (LOI).
Key Informants (KI): Persons within and outside of the healthcare sector who would provide insight on the stakeholder engagement process. Generally, these persons have experience in research projects. Academics, non-profit leaders, church officials, etc., might serve as key informants.
Office of Sponsored Research (OSR): Researchers associated with academic institutions obtain permissions regarding Letters of Intent (LOIs) and project proposals from the Office of Sponsored Research (OSR). Packaging materials are due to the OSR before they are sent out to funding agencies.
Patient-Centered Outcomes Research (PCOR): Research focused on patient outcomes related to physical or mental health care needs.
Patient-Centered Outcomes Research Institute (PCOR): a United States based non-governmental institute created during the Patient Protection and Affordable Care Act of 2010.
Percent Effort (PE): Percent of compensated effort for an individual on the project during the specified Certification Period (CP).
Principle Investigator (PI): the leader of an academic grant in charge of the research protocol.
Research Assistant (RA): Paid or un-paid personal responsible in assisting the Principal Investigator (PI) throughout the research process.
Stakeholder: A person who identifies as part of a group – Community Organization, Researcher, Community Member – who would be impacted by the study.
Indirect Cost Rate (ICR): the overhead cost, such as personal productivity, building space and research materials needed to insure that the project succeeds.