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
GUIDING RESEARCH PRIORITIES
Sample: El Futuro
TOOLKIT CONTEXT:
Step 1: Developing Research Ideas
Introduction
El Futuro nurtures stronger familias to live out their dreams. We do so by providing culturally appropriate, bilingual mental health and substance abuse treatments for Latino families in a welcoming environment of healing and hope.
In addition to providing outpatient clinical treatment, El Futuro:
- Provides community and rural support, through services such as school- based treatment, telehealth appointments, integrated care;
- Provides teaching, training, and technical assistance to allied providers and others interested in learning or replicating the El Futuro model;
- Conducts research and evaluation.
El Futuro’s Research Goals
Our goal is to strategically expand our applied research, program evaluation, and dissemination activities in order to better help the community we serve and develop into a statewide and national model for Latino mental health.
We have led or participated in research funding by the NIMH and PCORI, and have ongoing partnerships with researchers at UNC, Duke, and the University of Southern California. We participate in select policy reform dialogue when our
voice can have an impact on improved care for immigrant families.
El Futuro’s Research Priorities
Current research and evaluation priorities include:
- Improved data management – projects that help us manage our data more efficiently for collaboration in research and evaluation projects (including current or potential Collective Impact efforts).
- Population data gathering and analysis – projects that help us improve how we interface with existing data, both through the lens of responding to community needs as well as evaluating our impact on broader societal trends.
- Evaluation of El Futuro – projects that help us analyze treatment outcomes data more frequently, for smaller sub-populations, over longer periods of time, and using best practices in clinical evaluation. An additional goal is to analyze results in ways that isolate the “model components” of our efforts – i.e., what treatments or approaches are most successful with which sub- populations?
- Development of modified evidence-based practices – projects that help us identify good practices to test and use at El Futuro; modify current/new practices to suit the community we serve and the clinicians doing the work out of CBOs; show effect within the population we serve; develop toolkits / tools for clinical use with our population; and develop curriculum materials that help us teach others about our model and offer technical assistance.
- Dissemination of resources developed by El Futuro – projects that help us build out our infrastructure and related tools for disseminating our findings more comprehensively and effectively.
Research Values
El Futuro engages in research when it furthers our mission and helps the people we serve.
Additionally, we follow the PCOR Standards of Engagement. Projects that meet these Standards must:
- Be focused on PCOR and patient engagement;
- Be grounded in cultural competence;
- Include a plan for sustainability of efforts; and
- Show how knowledge is improved in order to better help the community we serve.
TOOLS
- Project Summary
- Research Leadership Team
- Sample Research Policy – Piedmont Health
- PCOR Standards of Engagement
- Guiding Research Priorities
- Policy on Patient Involvement in Research & Community Engagement Principles
- Landing Pad for Research Ideas and Collaborators