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
COLLABORATORS
Research Team
The project was led and initiated by El Futuro, a community behavioral health organization serving Latinos in Durham, NC, with a mission to nurture stronger familias to live out their dreams.
Luke Smith, MD
Principal Investigator
Luke Smith, MD is the Executive Director of El Futuro, a nonprofit behavioral health agency offering outpatient services to the Latino population in the Piedmont region of North Carolina. He is a practicing Spanish-bilingual psychiatrist who is boarded in Child/Adolescent and General Psychiatry. In 2004 he led the creation of El Futuro in order to address the unmet need of bringing accessible behavioral health services to the growing Latino community in North Carolina. He brings not only clinical experience but also over 10 years of developing the work of El Futuro. With steady growth and innovative funding approaches, El Futuro now serves approximately 1,600 individuals each year from 20+ counties. Psychiatry residents, Family Medicine residents, medical students, Psychiatric Mental Health Nurse Practitioner students, Social Work students, and Psychology doctoral students all train under Dr. Smith and his colleagues to learn practical psychiatric care and implementation of effective service delivery for the underserved Latino community. Under his watch, El Futuro has maintained a careful focus on patient engagement and participated in four successful, multi-year, community-based research projects funded by the National Institute of Mental Health (NIMH) and Patient Centered Outcomes Research Institute (PCORI).
Karla Siu, LCSW
Co-Principal Investigator
Karla Siu Daugherty is the Clinical Program Director at El Futuro, Inc. She is an MSW graduate from the UNC Chapel Hill School of Social Work. She has been the community lead on Padres Efectivos, a PCORI funded initiative and The Right Question Project funded by the Cambridge Health Alliance (PI. Margarita Alegria). She partnered with Dr. Mimi Chapman and others to create a community-based program for Latino families entitled the Nature Trail Project. She is a licensed clinical social worker who has practiced in the Latino community for the past 14 years. She won the Tarheel of the Week award from the Raleigh News & Observer, the state’s paper of record and the Latin American Women’s Excellence Award. She was appointed to the state’s Domestic Violence Commission in 2013. She is the lead planner and a key presenter for El Futuro’s biannual conference on Latino PCOR Toolkit for Community Behavioral Health Organizations Serving Latinos 40 mental health which attracts providers from multiple professions from across the Southeastern U.S. She co-authored a paper on cultural issues in treating Latino-Hispanic families with domestic violence issues, published in 2009.
Kathleen Thomas, PhD
Site Principal Investigator
Kathleen Thomas is a behavioral health economist whose work focuses on improving access and quality of care for mental health services, working with families and policymakers to address patient-centered outcomes and develop meaningful insurance policy. She is a Senior Research Fellow at the Cecil G Sheps Center for Health Services Research and Adjunct Associate Professor of Health Policy and Management at the University of North Carolina at Chapel Hill where she has served as principal investigator of PCORI, AHRQ, HRSA, CMS and RWJF funded work. Dr. Thomas’ undergraduate degree in classical languages is from Pomona College. She holds an MPH from Yale and a PhD in health economics from the University of North Carolina at Chapel Hill. She serves as chair and ad hoc reviewer for PCORI and HRSA study sections, as well as expert reviewer for a number of journals including Psychiatric Services and Pediatrics. Her work has been cited in the Wall Street Journal and The Guardian. Dr. Thomas is recipient of the John M Eisenberg Excellence in Mentorship Award from the Agency for Healthcare Research and Quality and the Mental Health Section Award of the American Public Health Association and is recent past Chair of the Section.
Mónica Pérez Jolles, PhD
Co-Principal Investigator
Dr. Perez Jolles is a health services researcher with expertise in child mental health, systems integration and innovation, and community-based participatory research to address health disparities. Her research focuses on identifying and evaluating evidence-based practices in health and human service sectors, and interventions that increase the use of health services by minority children and caregivers with behavioral and physical health needs. Dr. Perez Jolles has been involved in PCORI-funded projects aimed at enhancing both – service providers’ capacity to engage in patient-centered outcome and collaborative research and patient activation. She is a research affiliate at the Sheps Center for Health Services Research, UNC-Chapel Hill, and an assistant professor at the University of Southern California, Los Angeles. Dr. Perez Jolles holds a doctoral degree on Health Policy and Management from the University of North Carolina at Chapel Hill. She has been funded by research training grants sponsored by the Agency for Health Care Research and Quality (AHRQ). She has published in peer-reviewed journals and has presented her research at national and international scientific conferences.
Workgroup Members
- Latino Patient/Caregiver Research Consultants
- Alizarina Rojas
- Fabiana Palomo
- Estela Lopez
- Others (anonymous)
- Linda Beeber, PhD, RN, CS – Professor at The University of North Carolina at Chapel Hill School of Nursing
- Kerry Brock, MPA – Director of Advancement and Strategy at El Futuro, Inc.
- Marni Holder, FNP – Program Development Director at Piedmont Health
- Fiorella Horna – Grant Officer at El Centro Hispano
- Mary Mathew, MSPH – Director of Programs & Partner Engagement at East Durham Children’s Initiative
- Meredith McMonigle – Program Manager at Family Success Alliance
- Florence Siman, MPH – Health Program Director at El Pueblo, Inc.
- Marvin Swartz, MD – Professor & Head, Social & Community Psychiatry at Duke University School of Medicine Department of Psychiatry and Behavioral Sciences
- Renee White, MSW, LCSW – Clinical Director at Carolina Outreach, LLC
Key Informants
- Gary Bennett, PhD – Professor of Psychology, Global Health & Medicine at Duke University Trinity College of Arts and Sciences – Psychology and Neuroscience – Global Health Institute
- Mimi Chapman, PhD, MSW – Professor at The University of North Carolina at Chapel Hill School of Social Work
- Howard Eisenson, MD – Chief Medical Officer at Lincoln Community Health Center
- Pamela J. Maxson, PhD – Director of Operations at the Duke Center for Community and Population Health Improvement
- Nilda (Nena) Peragallo Montano, DrPH, RN, FAAN – Dean and Professor at The University of North Carolina at Chapel Hill School of Nursing
- Byron J. Powell, PhD – Assistant Professor of Health Policy and Management at The University of North Carolina at Chapel Hill Gillings School of Global Public Health
- Daniel S. Reuland, MD, MPH – Professor of Medicine at The University of North at Carolina Chapel Hill Lineberger School of Medicine in the Division of General Internal Medicine and Clinical Epidemiology