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
NIH-FORMATTED BIOSKETCH
Sample from a University Partner
TOOLKIT CONTEXT:
Step 3: Seeking Funding & Forming the Application
A. Personal Statement
Brief paragraph describing goal of proposal, role of individual in proposal, expertise individual
brings to the project with brief examples of research experience including role, relevant subject content and funder(s). Other relevant leadership roles.
1. List up to 4 relevant citations
B. Positions and Honors
Positions and Employment
- 2000 – 2015 Research Associate and Fellow, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC
- 2008 – Associate Director UNC-CH Training Program, NRSA, Health Services Research, Chapel Hill, NC
- 2014 – Adjunct Associate Professor, University of North Carolina at Chapel Hill, Health Policy and Management, Chapel Hill, NC
- 2016 – Senior Research Fellow, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC
Other Experience and Professional Memberships
- 2002 Participant, National Institute of Health workshop on psychosocial and behavioral interventions research in autism
- 2005 Participant, National Institute of Mental Health Panel on Autism Policy Research, Organization for Autism Research
- 2006 – Intersectional Steering Committee, Section Chair, Program Chair, Council Member, Mental Health Section, APHA
- 2010 – Chair and Ad Hoc Reviewer, Maternal & Child Health Bureau, HRSA
- 2013 – Member, Reducing Disparities Standing Review Panel, PCORI
Honors
C. Contribution to Science
- Access to care for children with autism: Service use, expenditures and implications for choosing insurance. Problem: Families raising children with autism are more likely to report unmet need than other families of children with special healthcare needs. In 2000, little was known about patterns of service use. Currently, there is a concern that financial burden is greatest for families with limited resources. Findings: There are disparities in access to care, families with greater resources pay for services out of pocket while vulnerable families do without. Moreover, families’ ratings of their health insurance are misaligned with benefits received. Impact: This work is routinely cited to characterize access to care for children with autism. The Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act) was passed in 2014 to continue, among other issues, research on autism services. Roles: Principal and co-investigator
- 4 example publications
- Up to 5 contribution sections
Complete List of Published Work in My Bibliography
D. Research Support
Ongoing Research Support
74157 (Funder)
NAME (PI)
12/01/2016-05/31/2017
Title
Brief (3 lines) project description
Role: principal investigator or co-investigator
Completed Research Support
74157 (Funder)
NAME (PI)
12/01/2016-05/31/2017 Title
Brief (3 lines) project description
Role: principal investigator or co-investigator
The Project Summary should include at least the following information:
- Study Background and Purpose
- How it connects with community needs
- How will participation benefit my organization?
- Lasting relationships, knowledge, or capacity improvements to result
- Funding
- Other
- Project Timeline
- Funding proposal timeline (including that of any partnering researchers and their university staff counterparts)
- Project timeline
- Profiles of Other Research Partners
- The research entity – including a description of its Facilities & Resources
- The researchers – including experience in the community
- Proposed Roles for Partners
- Data Ownership – who owns the data? Outcomes?
- Proposed Methodology
- Proposed Budget
After project approval and funding is awarded….
UPDATED PROJECT SUMMARY
- Final budget approved
- Revised Project Workplan, including revisions to Project Timeline and Personnel Roles & Responsibilities as appropriate
- A culturally competent plan for recruiting patients to guide efforts to engage patients in the project
- Updates to the methodology / data collection procedures
- Any other changes from the original Project Summary