E THICS AND C OMMUNITY B ASED R ESEARCH Joanna Ochocka Brenda Roche Centre for Community Based Research Wellesley Institute Waterloo, Canada Toronto, Canada.

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:

[email protected]

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