Community based participatory research
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Community Based Participatory Research. Bethany Hall-Long, PhD, RNC, FAAN Professor Nursing and Joint Faculty Urban Affairs, University of Delaware DE State Senator, District 10 Michael P. Rosenthal, MD Chair, Department of Family and Community Medicine, Christiana Care Health System

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Community based participatory research

Community Based Participatory Research

Bethany Hall-Long, PhD, RNC, FAAN

Professor Nursing and Joint Faculty Urban Affairs,

University of Delaware

DE State Senator, District 10

Michael P. Rosenthal, MD

Chair, Department of Family and Community Medicine, Christiana Care Health System

Professor of Family and Community Medicine, Thomas Jefferson University


Community based participatory research1

Community Based Participatory Research

CBPR is a collaborative research approach

Designed to ensure and establish structures for participation by communities affected by the issue being studied

Includes representatives of organizations and researchers in all aspects of the research process

To improve health and well-being through taking action, including system and social change.


Community based participatory research2

Community Based Participatory Research

CBPR emphasizes:

(1) co-learning issues of concern and the issues that can be studied with CBPR methods and reciprocal transfer of expertise;

(2) sharing of decision-making power; and,

(3) mutual ownership of the products and processes of research.


Dhsa clinical and translational research

DHSAClinical and Translational Research

DVICTS/CTSA Grant

Translational Research Continuum (T1, T2, T3)

Community Engagement and Research (CER)


Cer section aims

CER Section Aims

Aim 1:

Establish a new infrastructure that actively involves the community in setting clinical and translational research priorities, catalyzes new community and institutional interactions that align community health needs with research initiatives, and facilitates informed participation relevant research by the community.


Cer section aims1

CER Section Aims

Aim 2:

Develop new community-institution partnerships in clinical and translational science;

Increase community member knowledge about clinical and translational science research,

Promote community awareness of research initiatives that are aligned with community health needs, and,

Improve community access to opportunities to register for research studies of interest.


Cer section aims2

CER Section Aims

Aim 3:

Identify, train, and mentor community leaders and healthcare providers and institutional trainees, researchers, and scholars in the principles and practices of community-based participatory research;

Increase the participation of diverse populations in clinical and translational science research; and promote the dissemination of research findings.


Challenges

Challenges

  • Data Coordination, Availability, Sharing

  • Identifying Community Decision Makers

  • High Turnover of Community Partners

  • Sustainability of collaboration

  • Multiple organizations/Duplication

  • Over saturation

  • Competition for Limited Resources

  • Lack of Innovation, Novel Partnerships

  • Communication/Siloing

  • Placing Value on CBPR

  • Overwhelming Participants


Community based participatory research

  • Reciprocal Learning

  • Capacity to Participate (Community and Systems)

  • Road Blocks in Transformation

  • Effective Dissemination/Producing Real Impact

  • Assessment Fatigue

  • Funding!

  • Competing Priorities

  • Limited and/or lack of resource coordination

  • Competing Service and Research Expectations

  • Geographic Roadblocks


Global health

Global Health

Omar Khan, MD MHS Nancy Sloan DrPH

[email protected]@christianacare.org

Christiana Care Health System


How do we get there from here

How do we get there from here?

Who are we?

RNs, SW/anthropology, Community health/educator, Public health professional, Researchers, physicians

2.What do we want to do?

Connect

Interests: teaching (4), research (7), service delivery (8), social entrepreneurship (2), process & connectivity (1)

N= 12

3.What resources do we have locally?

Knowledge; interest; contacts

4.What resources do we need to obtain?

Structure to be able to collaborate & connect

Survey on GH interests (model after TJU?)

5.What is the next step?

Continued interaction: virtually, listserve, meeting

Recognition of mutual respect, collective engagement, interdisciplinarity


Maternal child health

Maternal/Child Health

Matthew Hoffman, CCHS

David Paul, CCHS


Collaborations

Collaborations

  • IRB collaboration-reciprocity of IRBs

  • Follow-up on high-risk preterm infants (cognition, behavior, social, family-centered, home-based, school age)

  • Maternal follow-up

  • Database to link maternal & infant data

  • Maternal stress, depression, etc (cortisol)


Collaborations con t

Collaborations, con’t

  • Lab to clinical research

  • Outcomes specific to our population

  • Local protocol for National Children’s Study


Barriers

Barriers

  • IRB / data sharing

  • Lack of consistent EMR

  • Funding

  • Important clinical questions (different view points on same issue)

  • Lack of forum to discuss research ideas


Cancer

Cancer

Diana Dickson-Witmer, CCHS

Ayyappan Rajasekaran, Nemours


Challenges1

Challenges

  • Four separate IRB’s for our four institutions

  • Difficult to identify the institution specific requirements for attendance at tumor boards at each institution

  • Difficult to identify potential collaborators with shared interests.

  • Adult clinical trial accrual lower than pediatric clinical trial accrual


Opportunities for collaboration

Opportunities for Collaboration

  • Early tracking of pre-invasive disease, specifically HPV infection

  • Collaboration to increase rate of HPV vaccination

  • Creation and promulgation of video and other methods of increasing awareness of clinical trials

  • Creation of videos of healthcare providers presenting clinical trials information to patients

  • Public awareness program for behavioral factors contributing to wellness


Opportunities

Opportunities

  • Use of Center of Excellence to promote women’s and children’s health

  • Multi-institutional tumor boards, live and video-conferenced

  • Website with clear instructions for completing educational modules required for attendance at tumor boards at each institution


Adolescent health

Adolescent Health

Roger Kobak, University of Delaware

Judy Herrman, University of Delaware


Opportunities for collaboration1

Opportunities for Collaboration

  • Linking researchers/evaluators with current programs and policies

  • Local focus on staying in school/reducing drop out rates reinforces the need to attend to high risk behaviors in youth

  • Delaware is a unique “laboratory” in which to develop partnerships and conduct research


Challenges2

Challenges

  • Need for advocacy—teens often are without a voice or a vote

  • Economy/money/Time

  • Engaging Adult Caregivers

  • Networking—Knowledge of the interests, talents, and desire for partnering with others

  • “The left hand doesn’t always know what the right hand is doing!”


Tools needed to enable success

Tools Needed to Enable Success

  • Data—we have the YRBS (Middle and High Schools)

  • We have this Alliance with four strong members who bring different assets to the table

  • We have a cadre of people interested in adolescent health

  • We need to know the who/where/what of adolescent programs and research

    • Develop a web site allowing for individuals to make connections with others who have common research interests and goals—link this web site with the Delaware Health Sciences Alliance web site

    • Create a Center for Adolescent Health to serve as a “bridging mechanism” between interested advocates, program developers, and researchers

    • Conduct a forum for interested parties to meet and discuss opportunities (begin with UD, then include other interested parties).


Behavioral health

Behavioral Health

Cynthia Robbins, University of Delaware

Roger Harrison, Nemours


Current initiatives in behavioral health

Current Initiatives in Behavioral Health

  • UD Center for Drug and Alcohol Studies Surveys: YRBS, YTS, DSS

  • Project Life (suicide prevention)

  • SPF-SIG programming and evaluation (SAMHSA, DSCYF, DSAMH, UD)

  • University Schools Alliance

  • Front Door Team

  • 211 Help Line

  • Mobile Crisis Units

  • Bright Start


Opportunities for collaboration2

Opportunities for Collaboration

  • Laboratory/Behavioral Research on Biomarkers of clinical impact

  • Girl Scouts programs for children of incarcerated parents and girls leaving juvenile corrections

  • Drug and Mental Health courts

  • Reentry Initiatives

  • Nurse educators

  • Home visits

  • Clinicians in systems (families, schools, daycare)


Tools needed to enable success1

Tools Needed to Enable Success

  • Resources for behavioral health issues of children w/ communication issues/special need

  • Training for nurse educators

  • Shared information about resources

  • Statistical/Methodological consultation

  • Cooperation of multiple IRBs


Challenges3

Challenges

  • Translating knowledge into behavior change

  • Communication between clinicians and researchers

  • Iaddressing needs of increasing Hispanic population

  • Children with disabilities/communication issues

  • Needs of Grandparents caring for children

  • Literacy Across the Life Span


Health services delivery

Health Services Delivery

Stephen Lawless, Nemours

Neil Goldfarb, TJU


Institute of medicine dimensions of performance

Institute of Medicine Dimensions of Performance

  • Efficiency

  • Equity

  • Safety

  • Family Centered

  • Effectiveness

  • Timeliness


Current national priorities in health services delivery

Current National Priorities in Health Services Delivery

  • National Priorities

    • Patient and Family Engagement

    • Safety

    • Care Coordination

    • Palliative and End of Life Care

    • Equitable Access

    • Elimination of Overuse

    • Population Health

    • Infrastructure Supports


Current initiatives in health services delivery research

Current Initiatives in Health Services Delivery & Research

  • TOO MANY TO LIST!


Opportunities for collaboration3

Opportunities for Collaboration

  • Lots of shared interests across attendees – the question is how to foster collaboration given strong interest


Tools needed to enable success2

Tools Needed to Enable Success

  • Searchable databases on researchers and research projects, and a bulletin board, to help identify potential collaborators

  • Community resource guide – what resources exist for women’s and children’s health, how can they be accessed? Where are they located, in relation to the population?

  • Coordination between partner organization IRB’s – centralized or standardized process

  • Student opportunities

  • Seed projects – more opportunities and funding


Challenges4

Challenges

  • Delays in care – provider vs. consumer barriers

  • Limited sharing of information

  • Services remain uncoordinated

  • Lack of handoffs and transitions in care

  • Quality data not available, or difficult to obtain

  • Differing definitions of women’s health – what’s related to women, versus all people

  • Large population, tough to tackle


How can dhsa help

How can DHSA Help?

  • Better communication about what DHSA is, and what services it offers

  • Promoting DHIN development, access, and use

  • Creating the inventory

  • Creating tools to facilitate information sharing and collaboration


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