Research%20Ethics%20in%20Work%20with%20Communities

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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 MacDonalds Employee-of-the-Month

IHPR Institute of Health Promotion Research
Partners in Community Heath Research-Training
Program
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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

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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

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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.

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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

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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

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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

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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

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Facts et al.

• Data raw facts
• Information organized presentations of facts
• Knowledge organized application of information
• Wisdom just, fair application of knowledge

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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

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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
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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.

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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

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WHO Evaluation Working Group

• 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

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WHO Evaluation Working Group

• 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

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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.

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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_at_interchange.ubc.c
  a
• 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