Community EngagedResearch

Tracy A Battaglia, MD MPHJune 23, 2015

Introductions

Ann Han, MS. CTSI Community Engagement Coordinator

Denise Crooks, MPH. Integrative Medicine Group Visit (IMGV) project

Gloria Johnson, Patient Advocate, Project SUPPORT

Outline

1. Community Engaged Research Definition of Community Key components of Community Engaged

Research Benefits/Barriers of CER

2. Experiences and Expectations of CER partners at BU

3. Resources at Boston University for CER

What is a community?

No scientific formula Driven by many factors: funding agency, health

problem you are trying to address, planned methods/approach

Common elements of community: Locus – city, village, neighborhood, workplace, etc. Sharing common interests/perspectives Joint action Social ties (family, friends) Diversity

BU CTSI Community

Community Engaged Research

framework or approach for conducting research

not a methodology in and of itself characterized by:

the principles that guide the research the relationships between the

communities and academic researchers.

Community Engaged Research

Exists on a continuumtraditional research CER CBPR

variation in the strength and intensity of community-academic collaboration

varies by: research objective, participants, community history, local politics…

each partnership will develop its own way of working together

Community Engaged Research

Minimum requirements: The community be involved in a

meaningful way partnership development cooperation and negotiation commitment to addressing local health

issues

7P Framework*: stakeholder engagement

Patients Public Providers Payers policy makers product makers principal investigators

*T.Concannon et al.

Benefits of Community Engaged Research Community input in setting research

priorities Facilitates recruitment user friendly, culturally sensitive,

practices and measures Local interpretation of results Trust and respect with community More likely to lead to improvements

in community health

(Viswanathan et al., 2004).

Barriers to Community Engaged Research

community Distrust academia Lack knowledge

benefits Time constraints Lack resources Don’t feel that they

are treated as equitable partners

academic Time to develop

community relationships

IRB Dissemination Promotion Funding/ Sustainability Unsure that the

benefits outweigh the costs

TWO PCORI-FUNDED CER PROJECTS BEING

CONDUCTED AT BU

Contacts: Ann Han, Community Outreach Coordinator,ann.han@bmc.org 8-8031Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918

Integrative Medicine Group Visits: Reducing Chronic Pain and Depression

Outcomes:self-reported pain and depression scores (Patient Health Questionnaire-8 Depression Scale). pain self-motivation, pain medication use, lifestyle changes, and quality of life surveys.

Randomized Controlled Trial among patients with chronic pain, to measure the impact of Integrative Medicine Group Visits:

Eliminating Patient Identified Socio-Legal Barriers To CancerCare: Project SUPPORT

on:1) Patient-reported outcomes: distress, needs and satisfaction.2) Clinically relevant outcomes: receipt of timely and quality cancer care.3) Intermediate outcomes: socio-legal barriers to cancer care.

MLP enhanced Patient Navigation

Patient Navigation

Randomized Controlled Trial among newly diagnosed Breast & Lung cancer patients at BMC, to measure the impact of:

Vs.

Approach toPatient Engagement

Governance

Give-Get Model for Project SUPPORT

Gives Gets

Research Team

• $25/meeting compensation

• Refreshments at the meetings and parking/ transportation vouchers

• Education on skills to advance as a patient advocate

• Annual celebration and recognition of the contributions of the Patient Advisory Group members

• Improved recruitment protocol:

82% of eligible subjects enrolled;

Dropout rate <5% at 12M• Ideas for new research

projects 3 funded projects in 2015

totaling $730,000• Community perspective on

proposed secondary research topics

• Community sources for dissemination of research

Give-Get Model for Project SUPPORT

Gives Gets

Patient Advisory Group

• Attends quarterly research meeting

• Available for consultations from research staff on recruitment protocols

• Conducts media interviews for tv and newspaper articles

• Provides insight/letters of support for new research projects

• Recognition and celebration of their contributions at an annual event

• First-hand knowledge of a research project and improved skills for advocacy

• Exposure as a TV or newspaper interviewee

• $25/meeting compensation

• Refreshments at the meetings and parking/ transportation vouchers

COMMUNITY ENGAGEMENT

RESOURCES THROUGH THE BU CTSI

Contacts: Ann Han, Community Outreach Coordinator,ann.han@bmc.org 8-8031Judi Henderson, Community Health Center Coordinator judy.Henderson@bmc.org 8-6918

Community Advisory Board Our goal is to match the power of research with the power

of the community to catalyze and support community research that matters. We aim to do this by understanding the barriers to the conduct of research so that we may create resources to support research which improves the health of our community.

Survey Responses to Primary Role of CAB

Conducting Research at Boston HealthNet Community Health Centers

The Boston HealthNet affiliated Community Health Centers have a Research Subcommittee that works in conjunction with the Boston University School of Medicine (BUSM) Internal Review Board (IRB). You must first present your study to this committee for review.

Research questions should have ¡a direct and practical relevance to the CHC, ¡a direct and practical relevance to their patient population needs, and ¡a plan to disseminate the results.

Contact: Judi Henderson, judy.henderson@bmc.org 8-6918

Developing community relationships

Connections with community groups, patient advocates, or researchers around similar community-engaged research interests through the Community Advisory Board. Contact: Ann Han, ann.han@bmc.org 8-8031

Training of community members to be health research advocates. Contact: Ann Han, ann.han@bmc.org 8-8031

ReSPECT recruitment services. Contact Farrah Belizarre farrahab@bu.edu 8-8862

IRB Issues The Clinical Research Resources Office (CRRO) provides

assistance with IRB application preparation, including development of Data Safety Monitoring Plans (DSMPs), writing and editing of consent forms, fulfilling of HIPAA requirements, etc.

Assistance with study design, statistical issues, and forms development is also available through referral to experts within CTSI.

Contact: Fill out the CRRO Services Request http://www.bumc.bu.edu/crro/services-request-form/

Dissemination List of media contacts/outlets for publicizing your work in

the local community. http://www.bu.edu/ctsi/programs/community-engagement/

Resources on how to present to a lay audiencehttp://www.centerforcommunicatingscience.org/boston-

university-medical/ password: communicate_boston

BU Communications Office advice and information on publicizing events and working with the media.

Contact: Gina DiGravio, Media Relations Manager, ginad@bu.edu 8-8480

Helpful Organizations

Community Campus Partnerships for Health (CCPH). A nonprofit membership organization that promotes health equity and social justice through partnerships between communities and academic institutions. http://depts.washington.edu/ccph/

Additional Resources Community-Engaged Research with Community-Based

Organizations, A Resource Manual For Researchers. http://accelerate.ucsf.edu/files/CE/manual_for_researchers_agencies.pdf

Principles of Community Engagement, Second Edition http://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf

Community-Institutional Partnerships for Prevention Research Group. Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill-Building Curriculum. 2006. www.cbprcurriculum.info

Family Health International. Research Ethics Training Curriculum for Community Representatives. http://www.fhi360.org/resource/research-ethics-training-curriculum-retc-second-edition