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ETHICS AND COMMUNITY BASED RESEARCH
Joanna Ochocka Brenda RocheCentre for Community Based Research Wellesley InstituteWaterloo, Canada Toronto, Canada
Living Knowledge ConferenceBelfast, August 29, 2009
ROUNDTABLE PURPOSE
To explore the need for community based ethics review processes of community-based research conducted within and beyond academia
CENTRE FOR COMMUNITY CENTRE FOR COMMUNITY BASED RESEARCHBASED RESEARCH
25 years of research-inspired social innovation in Canada
Over 350 community based research projects
Based on an entrepreneurial spirit in collaboration with its many partners to initiate new projects
Works in diverse collaborations and partnerships for social innovation and progressive social change;
Conducts and supports research and policy work on housing, health equity and health care reform,
immigrant health and social innovation in the third sector;
Identifies and mobilizes communities for policy alternatives and solutions on issues of urban health
and health equity
Academic Funders
(Tri-Council)
AcademicBasedResearchers
TRANSLATION OF ETHICS INTO SOCIETY
Community BasedResearch
Ethical reviewrequired
Ethical reviewnotrequired
Ethical research standardsmeaningfully and consistently practiced
Ethical research standardsmeaningfully and consistently practiced
The Present The Proposed
Ethical Practice
HOW IT ALL STARTED
Open community forum in Waterloo Region, January 2008 attended by over 45 representatives. Call for working group
Plans for a needs assessment and feasibility study in Waterloo Region
CUExpo2008 – CCBR and Wellesley Institute met and discussed the possibility of a joined project.
Initiated needs assessment and feasibility study in two sites: Waterloo Region and Toronto.
NEEDS ASSESSMENT AND FEASIBILITY STUDY
Purpose: To clarify the need for community based research
ethics process by identifying and understanding issues and concerns from multiple stakeholder perspectives, and then to determine an appropriate and feasible response that will facilitate ethically sound community based research.
Research Methodology: Participatory Action Research/Community-Based Research Qualitative methods (focus groups and face-to-face
interviews) Community forum to mobilize the knowledge
PARTICIPATORY ACTION RESEARCH
“Participatory action research is a research approach that involves active participation of stakeholders, those whose lives are affected by the issue being studied, in all phases of research for the purpose of producing useful results to make positive changes.” (Nelson, Ochocka, Griffin & Lord, 1998)
Ways to Implement Participatory Action Research Stakeholder steering committees Student researchers Research team meetings (training, support, relationship,
participation) Ongoing communication and information sharing
DEFINITION OF COMMUNITY BASED RESEARCH Community based research is research that strives to
be: Community situated -begins with a research
topic of practical relevance to the community (as opposed to individual scholars) and is carried out in community settings.
Collaborative -community members and researchers equitably share control of the research agenda through active and reciprocal involvement in the research design, implementation and dissemination.
Action-oriented -the process and results are useful to community members in making positive social change and to promote social equity.
PRELIMINARY FINDINGS
NGOs want a mechanism for ready consultation to help them in applying
ethical consideration to their research Funders to recognize the need for additional resources to prepare and
follow through an ethics review process
Academics understanding that any research review mechanism needs to be flexible
and context specific, open to discussions and negotiations recognition of diverse values and world views of community groups research should be based on community needs
Institutions A need to clarify between existing research boards and community
based research and the primary role of institutions to protect their clients
Funders/Government Ethics reviews should include how the knowledge gained will be shared
DISCUSSION QUESTIONSDRAWING ON PARTICIPANTS’ EXPERIENCES
What are the challenges in translating academic ethical standards into community research?
What are the current practices that attempt to address ethics in community based research?
What is really needed?
CONTACT INFORMATION
Dr. Joanna OchockaCentre for Community Based
Research 73 King Street West, Suite 300Kitchener, ON, Canada N2G 1A7Phone: (519) 741-1318 Fax: (519) 741-8262E-mail:
Website: www.communitybasedresearch.ca
Dr. Brenda RocheDirector, Community Based ResearchThe Wellesley Institute45 Charles St E, Suite 101Toronto, ON, Canada M4Y 1S2Phone: (416) 972 - 1010Fax: (416) 921 – 7228Email: [email protected]: www.wellesleyinstitute.com