E THICS AND C OMMUNITY B ASED R ESEARCH Joanna Ochocka Brenda Roche Centre for Community Based Research Wellesley Institute Waterloo, Canada Toronto, Canada Living Knowledge Conference Belfast, August 29, 2009

R OUNDTABLE P URPOSE To explore the need for community based ethics review processes of community-based research conducted within and beyond academia

C ENTRE FOR C OMMUNITY B ASED R ESEARCH 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) Academic Based Researchers T RANSLATION OF E THICS INTO S OCIETY Community Based Research Ethical review required Ethical review not required Ethical research standards meaningfully and consistently practiced Ethical research standards meaningfully and consistently practiced The Present The Proposed Ethical Practice

H OW 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.

N EEDS A SSESSMENT AND F EASIBILITY S TUDY 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

P ARTICIPATORY A CTION R ESEARCH “ 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

D EFINITION OF C OMMUNITY B ASED R ESEARCH 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.

P RELIMINARY F INDINGS 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

D ISCUSSION Q UESTIONS D RAWING ON P ARTICIPANTS ’ E XPERIENCES 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?

C ONTACT I NFORMATION Dr. Joanna Ochocka Centre for Community Based Research 73 King Street West, Suite 300 Kitchener, ON, Canada N2G 1A7 Phone: (519) Fax: (519) Website: Dr. Brenda Roche Director, Community Based Research The Wellesley Institute 45 Charles St E, Suite 101 Toronto, ON, Canada M4Y 1S2 Phone: (416) Fax: (416) 921 – Website: