Practical Tools for Ethical Engagement in Health Research, Part I

Ethical Considerations in Community Engagement in Health Research

By Ogai Sherzoi

Historically, research involving communities has not engaged and involved the community partners in an active and meaningful way (just one example are the nutrition experiments conducted in residential schools in the 40s and 50s [1]). As a result, many communities in our society feel that research has been conducted on them rather than with them. Communities are calling for new approaches in which they are equal participants in the research decision-making process, and where research conducted has a direct benefit for people involved. One example includes the slogan rooted in the disability rights movement NOTHING ABOUT US WITHOUT US.

Today, patient and public engagement in health research is slowly changing direction to a research paradigm that actively involves target communities as partners, exemplified by the Canadian Institutes for Health Research’s Strategy for Patient-Oriented Research (SPOR). To ensure history does not repeat itself and continue on the path of improving health and well-being of all Canadians, it is important that we talk about ethics, power dynamics, and rules of partnership. The ideas, questions, and concepts discussed in this blog series are adopted from Karen Hacker’s Community-based participatory research [2].

In this first post of the three-part series Practical Tools for Ethical Engagement in Health Research, we discuss ethics in the context of health research, and pose some helpful questions for researchers to reflect upon when considering community engagement in their research.

What is Ethics?

The word ethics is rooted from the Greek word etho, which refers to one’s morals and principles on what is right or wrong [3]. In research, ethical issues arise when there are concerns, conflicts, or dilemmas regarding the proper way of conducting research. To ensure that the interests of individuals involved in research are protected, governments and institutions have developed ethical principles and guidelines that researchers are expected to follow.

In addition to these ethical guidelines, research should be conducted using an anti-oppressive, trauma-informed, intersectional lens (which Carolyn has discussed in a previous post). This means that researchers need to consider health equity (and inequities), historical context (e.g. impacts of colonialism), systematic/structural barriers, power and privilege, the role of previous trauma (e.g. in the healthcare system, in research, etc.) and social location (gender, ability, religion, ethnicity, class, sexual orientation, etc.) when engaging with communities. It is important as a researcher that we consider these aspects prior to the start of the research projects, so we are not unconsciously causing harm.

What is Community?

In health research, first step is to define the population of interest and boundaries of their community. For example, is the population of interest part of a community that is geographically bounded (city, neighborhood, and country) or non-geographically bounded, but instead defined by a common culture (Inuit, Philippine, Ukrainian) or condition (caregivers of children with diabetes) or other shared concerns (barriers to accessing health services by newcomer community). Community has many meanings depending on the context. However, previous studies have identified more than 90 definitions for community, which consistently include three common characteristics [2]:

1. Social interactions between individuals;
2. Geographic area (such as a neighbourhood, city or country); and
3. Common ties (such as immigration experience, ethnicity, colour of skin, religious beliefs, health concerns, ability, sexual orientation, etc.)

Some additional key constructs used to identify a community include:

• Sharing common interests and perspectives (for example, viewpoints, ideology, values, history, oppressions, etc.)
• Social ties: the foundation for community (such as relationships with family, co-workers, neighbours, friends, acquaintances, support groups, etc.)
• Diversity within communities
• Social integration (e.g. immigrant and refugees who resettle and integrate within a new community)
• Social support networks, and
• Membership (being accepted and invited as a member of particular community).

It is also important to remember that no community is homogenous; there will always be a range of ideas, beliefs, and often even subgroups within communities. Effective and ethical engagement recognizes the diversity of communities, and learns from the communities themselves how they are defined and conceptualized, what the community means to its various members, and what the community as a whole considers important topics for health research [2].

Ethical Considerations in Community Engagement

In community-based research, there are some key areas that researchers need to focus their attention on from an ethical standpoint [2], which are:

1. Informed consent for research at the community level
2. Risks and benefits of research from community perspective
3. Community standards of justice, including those partnership ethics and economic distribution
4. Dissemination of research results

1. Community Informed Consent [2].

Any researcher who has worked with human participants is familiar with the concept of informed consent at the individual level, but the idea of community informed consent goes beyond the individual. Obtaining community consent is challenging given that individuals in the community are not homogeneous, and opinions from different subgroups may vary substantially. These challenges highlight the importance of understanding the values of the community at large, as it pertains to unstated ethical conduct. To address these challenges, researchers must strive to learn about a community’s cultural perspectives, governance, and overall context in health research — all of which begins with building relationships (an underlying theme in patient engagement). For guidance on how to get started with a community-based approach, check out this quick guide from the Clinical & Translational Science Institute at the University of California San Francisco.

To obtain informed consent at the community level, researchers must first work to understand the community and how they define themselves, and ensure that community leaders (formal and informal) support the research. Community advisory boards (CABs) play a crucial role, often serving as an initial point of entry into the community. CAB members work to bridge the relationship between the researcher and the community at large. Their insight and knowledge of community culture, local actors, community politics, and social networks are paramount to helping researchers successfully determine project feasibility and community engagement needs. Additionally, the CABs are an important starting point for researchers to gain a better understanding of the context for research and appropriateness of research questions and methods, from a both cultural and practical standpoint [2].

Critical questions to consider regarding community informed consent include:

• How is the value of the research project communicated to the community as a whole?
• Is the research project acceptable to the community of interest?
• Have you connected with community leaders (formal and informal) to assess the acceptability of the research topic?
• Have the criteria for inclusion been discussed with the community, and do these pose any ethical challenges?
• Are there particular issues that need to be addressed for this community, or its subgroups?
• Does the proposed consent form use (linguistically and culturally) appropriate language?
• As a researcher, how can you feel confident that the research is perceived as acceptable and feasible to the community?

Again, these questions can only be answered through dialogue with the community and its members.

2. Assessing Risks and Benefits from a Community Perspective [2].

When engaging a particular community in research, not only will a researcher need to assess the individual risks and benefits of research, but also the risks and benefits for the community as a whole. In other words, identifying what the community (and not just its individual members) will potentially gain or lose by participating in the research. The assessment should be developed with the community, as it needs to be unique to the community context and needs.

• Do the benefits to the community and its members outweigh the risks?
• Has the community risk versus individual risk been evaluated properly?

3. Ethical Considerations for Community Partnership [2].

An effective research partnership relies on parties sharing power in decision-making, building trust, respect, and economic distribution. As with the two other key areas, being able to accurately answer these questions is dependent upon the researchers’ commitment to working alongside the community, and requires building relationships with community leaders and members in order to inform the research methodology.

• Does the proposed research/approach respond to the need of this community and/or support existing infrastructure or networks?
• What is the plan for engaging with this community?
• How will the community be involved in the development and implementation of this research project?
• What is the researcher’s relationship with key stakeholders in the community?
• Are recruitment strategies culturally/linguistically appropriate?
• What role will the community partners have in recruitment?
• How accessible and approachable is the researcher to community stakeholders?
• What resources are required, and who will provide these resources?
• Are there appropriate resources devoted to this project?
• What is the community’s role and expectation regarding the allocation of these resources?
• Are there financial resources available for translation services/ interpreter services?

4. Dissemination of the Results [2].

The dissemination of the results needs to be carefully thought out. Inappropriate dissemination can have serious ethical implications. For example, if a community is required to wait until the “publication comes out” before sharing the results of their involvement in research, this does not represent an equitable power-sharing relationship. Communication of results to the community should always be the first consideration in community-based research, and decisions about information sharing should involve discussions with CAB members and leaders. Returning the findings to the community is important. For example withholding results/findings from the community may pose risk. In other words if the findings are going to help alleviate risk factors for that particular community than it needs to be shared with the community and not withheld from community. The ownership of the findings should be shared with the community.

• What strategies are in place to disseminate the results and prompt feedback from the community stakeholders?
• How do community members prefer to receive information?
• How can the results be shared in a way that benefits both the community and researcher?
• Will dissemination be through multiple venues (community forums, presentation, journal articles, and websites?)
• Are these venues effective and accessible to both community members/providers and researchers?

What are your thoughts on ethics in community-based research? Are there other ethical considerations that are critical to this type of work? Let us know in the comments or on Twitter @KnowledgeNudge.

In Part 2 of the series, we discuss the role of power dynamics in community engagement; and in Part 3, the rules of partnership.

References

1. Mosby I. Administering colonial science: Nutrition research and human biomedical experimentation in Aboriginal communities and residential schools, 1942–1952. Soc Hist, 2013;46:145–72

2. Hacker K. Community-based participatory research. Thousand Oaks, CA: SAGE Publishing, 2013.

3. Van de Sande A & Schwartz K. Research for social justice: a community-based approach. 2nd ed. Halifax, NS: Fernwood Publishing, 2017.

About the Author

Ogai Sherzoi is a knowledge broker for the Knowledge Translation platform at the George & Fay Yee Centre for Healthcare Innovation (CHI).