Research Ethics in Work with Communities

1. Research Ethics in Work with Communities Dr. James Frankish, Senior Scholar Director, Institute of Health Promotion Research Associate Professor, Health Care & Epidemiology & College for Interdisciplinary Studies 3X MacDonald’s Employee-of-the-Month IHPR Institute of Health Promotion Research Partners in Community Heath Research-Training Program

2. Current Projects • Training-Related Research & ActivitiesResearch Training Program in Community Partnership Research • Homelessness & Poverty-Related ResearchSupportive Housing for Persons with Serious Mental Illness & AddictionsInner-City Inclusivity, Olympics & HealthRural-Urban Migration, Homelessness & Health Services/Status • Health Literacy, & Literacy & Health ResearchHealth Literacy in Canadian School Children & High-Risk YouthMeasuring Health Literacy in Senior Immigrants in Greater Vancouver • Health-System Reform & Marginalized GroupsHealth Promotion in Primary Care ProjectChildren Living with HIV/AidsAdolescents' Concepts of Depression & Help-Seeking • Measuring the Health of CommunitiesCommunity Coalitions & the 2010 GamesMeasuring Community Capacity

3. Ethical Principles Tri-Council 2003 • Respect for human dignity • Respect for free and informed consent • Respect for vulnerable persons • Respect for privacy and confidentiality • Respect for justice and inclusiveness • Balancing harms and benefits • Minimizing harms • Maximizing benefits

4. Basic Premises • Power in research is related to knowledge of a ‘truth’ • Some forms of knowledge generation are more credible than others and some “knowers’ are more credibles • ‘Evidence’ generated by ‘credible’ means is more real and powerful • People who generate knowledge by credible means are more powerful • Evidence generated by ‘questionable’ means is unethical • Evidence generated by ‘questionable knowers’ is unethical • Power is maintained by controlling the creation of knowledge. Ethics (policies) is a form of exercising power.

5. Summary of Key Ethical Issues • Individual versus community consent • Ownership of results • Academic versus community standards • Maximizing good versus minimizing harm • Emergence of community-based codes of ethics and ethics review processes

6. Research, Power and Politics • Ideology influences problem definition and thereby which ‘evidence’ is accepted • All ‘research’ is political? • We have to hold facts lightly, continually testing them against experience and logic, recognizing connections to rules and contexts in which they appear, and scrutinizing the values that permeate them. Tesh 1990

7. Four Critical Issues • Establishing a basis for rules of evidence in community-based research • The search for appropriate indicators of ‘truth’ in community-based research • Appropriate theoretical-base for ‘evidence’ in community-based research • Establishing the relations between evidence and ethics in community-based research

8. Definitions of Evidence • Evidence comprises the interpretation of empirical data derived from formal research, or systematic investigations using any type of science or social science method. (Rychetnik, Frommer, Hawe & Shiell). • A multidimensional focus on determinants of health and the impossibility of tight environmental controls make an RCT inappropriate or misleading ….. Need a wide range of qualitative and quantitative methods. WHO 1998

9. Facts et al. • Data – raw facts • Information – organized presentations of facts • Knowledge – organized application of information • Wisdom – just, fair application of knowledge

10. Three Forms of Knowledge • Instrumental knowledge – traditional scientific approaches • Interactive knowledge – derived from shared living experiences • Critical knowledge – derived from reflection on what is right and just. Park, 1993

11. “Actual needs” Public’s perceived needs, priorities A Resources, feasibilities, policy Ways of Seeing Sources of Standards of Evidence Historical, Scientific, Normative Standards Arbitrary, Experiential, Community, Utility Standards Propriety, Feasibility Standards Green & Kreuter, 1999; Judd, Frankish & Moulton 2002

12. Evidence-Based Health Promotion • Evidence-based health promotion involves explicit application of quality research evidence when making decisions (Wiggers & Sanson-Fisher, 1998) • Implies an illusory pluralism of acceptance of standards of evidence.

13. Challenges of Evidence-Based Health Promotion • Defining what it means • Finding the relevant evidence • Assessing the evidence • Using the evidence appropriately • Creating new evidence • Sharing the evidence

14. Use of randomized control trials to evaluate health promotion is in most cases inappropriate, misleading and unnecessarily expensive Support use of multiple methods Support research into development of appropriate approaches to evaluating health promotion initiatives WHO Evaluation Working Group

15. Health promotion initiatives should be evaluated in terms of their processes as well as their outcomes Ensure that a mixture of process and outcome information is used to evaluate all health promotion initiatives WHO Evaluation Working Group

16. Appropriate? Evidence • We should assemble evidence of success using a kind of judicial principle i.e., providing evidence that we should take action even when 100% proof is not available. Tones 1997.

17. Contact Information Dr. Jim Frankish, Senior Scholar, Michael Smith Foundation Institute of Health Promotion Research Rm 425, Library Processing Centre 2206 East Mall Vancouver BC V6T 1Z3 604-822-9205, 822-9210, frankish@interchange.ubc.ca Personal Website: jimfrankish.com BC Homelessness & Health Research – Network bchhrn.ihpr.ubc.ca BC Homelessness Virtual Library - www.hvl.ihpr.ubc.ca Partners in Community Health Research www.pchr.net