Zsolt Nagykaldi PhD 1 , Barbara Norton DrPH 1 , Lyndee Knox PhD 2 , - - PowerPoint PPT Presentation

Zsolt Nagykaldi PhD1, Barbara Norton DrPH1, Lyndee Knox PhD2, Laurene Tumiel-Berhalter PhD3 and Patricia Cantero, PhD4

1 University of Oklahoma Health Sciences Center, Department of Family Medicine 2 L.A. Net Community Health Resource Network, Long Beach, CA 3 University at Buffalo, Department of Family Medicine 4 Latino Health Access, Santa Ana, CA

• No conflicts of interest of any kind
• No discussion of off-label use of medications

Project Funding: PCORI ME-1403-11937 Research Contract ($867,328 ) Responding to FOA: Accelerating PCOR and Methodological Research (2014)

PDQNet is a 3-year methods study that aims to address how patient and community groups, in partnership with academic researchers and Practice-Based Research Networks, can be active participants in setting and prioritizing the research agenda in primary care settings.

2015 2016 2017 Horizon Scan Engagement Scan Prioritization Inquiry Organization Inventory Literature Review Key Informant Interviews Appreciative Inquiry Concept Mapping

• Comm. values assessment

Conceptual value of information (VOI) estimates

Stakeholders are better prepared to be a part of research partnerships PCORI may know better how to leverage community priorities in community-centered primary healthcare research

 Oklahoma

• Stephens County CHIO (501-c3)
• OKPRN (PBRN 501-c3)
• OUHSC Primary Care Researchers

 Buffalo, NY

• Patient Voices Network
• UNYNet (PBRN)
• Univ. of Buffalo Researchers

 Los Angeles (metro), CA

• Latino Health Access (Comm. Org.)
• L.A. Net (community PBRN)
• L.A. Net Applied Research Consortium

CHIO: County Health Improvement Organization PBRN: Practice-Based Research Network UNYNet: Upstate New York PBRN L.A. Net: Los Angeles Community Health PBRN

L.A. Net PBRN Latino Healthy Access OKPRN PBRN Pathways for a Healthier Stephens County (CHIO) UNYNet PBRN Patient Voices Network Core Research Team

Community Research Partner Organizations

PBRNs: Practice-Based Research Networks PEOs: Patient-Engaged Organizations CBOs: Community-Based Organizations CHIO: County Health Improvement Organization Community Leadership Team Community Research Partner Organizations (PBRNs, PEOs, CBOs)

L.A. Net researchers in Los Angeles, CA University at Buffalo researchers in Buffalo, NY OUFMC researchers in Oklahoma City, OK OTHER PATIENT OR COMMUNITY GROUPS OTHER PATIENT OR COMMUNITY GROUPS

N=10

N=17

“What specific action can bring community input and voices into the study of health and healthcare improvement?” Brainstorming Ideas

based on focus prompt

Sorting Ideas into Concepts

STEP 2

Large Groups & On-line

Rating the Ideas

STEP 3

Analyzing the Data and Creating Maps

STEP 4

a creative stage

Interpreting Outcomes

Expert Team Large Groups & On-line Expert Team Large Groups

feasibility, importance, relevance

8 groups: 103 ideas 8 clusters of concepts 3 rating scales CS Global MaxTM software 3 interpretation groups

STEP 1 STEP 5

Cluster Final Concept Labels 1

Accountability

2

Community-Informed Competencies

3

Community Awareness

4

Communication

5

Respect and Trust

6

Community-driven Engagement

7

Collaboration

8

Working in and Through the Community

1 = not important; 2 = somewhat important; 3 = moderately important; 4 = very important; and 5 = extremely important

1 = not important; 2 = somewhat important; 3 = moderately important; 4 = very important; and 5 = extremely important 99 3 28 85 77 2.79 2.78 3.83

Importance

4.52 17 86 5 1 83 8 2 4.26 3.57

Impact

Go-Zone for Action

“Communicate simply and clearly, in plain language,…”

Culture & Values Pull & Exchange Strategies Community Animation* Push Strategies

These clusters represent a collection of general community capacity building processes, important to readiness for research-engagement High-rated clusters under these themes represent a set of actionable principles critical to building an interface between communities and researchers in setting research priorities

Accountability Respect and Trust Community-driven engagement Working through the Community Community-informed Competencies (Health) Communication Community Awareness

In the emerging conceptual model, community actors push out their health-related problems, priorities, or questions to receptive researchers and funders who actively pull them in, such that problems identified by the community set the agenda for researchers.

Collaboration * Community Animation: help bringing forth innate resources and abilities present in the community

INTANGIBLE TANGIBLE COMMUNITY- CONTROLLED RESEARCHER- CONTROLLED

DECIDE: Select from top 3-

5 problems/needs based on evidence and community values (Value of Information)

IDENTIFY:

Establish the core values of the community

EVALUATE: Gather

evidence on top 3-5 problems/needs (collaborating with researchers)

RANK: Order problems

and needs based on community values (initial ranking to identify top 3-5)

ASSESS: Brainstorm to

create a list of pressing problems and needs

PARTNER: Work with

researchers to address highest priority needs (when appropriate)

Starting Point/Conditions: 1) Pre-existing relationship with research partner(s) 2) Capacity to conduct priority-setting activities

PARTNER: Work with

• thers to take action or

advocate for change (when appropriate)

Uses a Promotor or Community Health Worker model as the driving force for the organization. Health “as a state of complete physical, mental and social well-being.” (WHO, 1948) Assist in improving the health of low-income people...through the full participation in decisions affecting their health.

Ideal Challenging

Brainstorming Ideas Sorting Ideas into Concepts Rating the Ideas Analyzing the Data and Creating Maps

A creative stage

Interpreting Outcomes

feasibility, importance, relevance

Making research WORK for the community...already!

Stakeholders are better prepared to be a part of research partnerships Translation Next Steps Translating research questions and data gathered in English & Spanish Translating (explaining) research methods to staff Translating (interpreting) message to research team

Identifying effective methods for engagement:

Include a diverse team of experts Budget adequately for future research

Lessons from process:

Funding: ME-1403-11937