Addressing health inequities through social inclusion: The role of community organizations

Abstract

Health inequities between groups result from the unequal distribution of economic and social resources, including power and prestige. Social processes where unequal power relationships exist lead to the social exclusion of individuals or groups. Social inclusion strategies are well suited to contribute to addressing health inequities. Community organizations can enhance marginalized community members’ inclusion in decision-making structures that affect their lives. In this paper, we discuss the role of community organizations in contributing to action on health inequities through social inclusion. We consider the social determinants of health and of inequities. We provide an overview of the impact of social exclusion on health inequities and on community capacity to address them. We explore the theoretical basis of addressing health inequities through social inclusion, both in collective action and in research strategies. We link theory to practice with examples from our experiences and describe the challenges of involving members of vulnerable populations. We conclude by offering suggestions as to how community organizations can foster social inclusion and some directions for future research.

Keywords

Community organizations social inclusion health inequities determinants of health vulnerable populations participatory action research

Introduction

In addition to one’s biology, health is influenced by economic and social conditions which determine the resources available to individuals and communities for them to satisfy their needs, manage their health and environmental conditions and reach their personal aspirations (Raphael, 2009). These social determinants of health span a breadth of factors such as childhood conditions, education and literacy, employment and working conditions, socio-economic status (SES), food security, housing, health and social services, social support, the physical environment, gender and culture (Commission on Social Determinants of Health [CSDH], 2008; Public Health Agency of Canada [PHAC], 2008; Raphael, 2009).

Deficiencies in resources for health contribute to unfair and unjust differences in health among groups in the population, known as ‘health inequities’ (Whitehead & Dahlgren, 2006). Although often conflated, some argue that there is an important distinction between health inequalities and health inequities (Graham, 2004). Health inequalities are linked to genetic, biological, social and other factors that result in differences in health status which may or may not be unfair, whereas health inequities refer to avoidable and unjust ‘social processes underlying the unequal distribution of these factors between groups occupying unequal positions in society’ (Graham, 2004, p. 102; Whitehead & Dahlgren, 2006). Health inequities can be worsened by stigmatizing and discriminatory policies that result in exclusion from social structures such as social networks, social institutions and broader political and economic structures (Neale, 2008; Raphael & Bryant, 2006). Exclusionary processes often contribute to health inequities (CSDH, 2008; Marmot, 2007; Whitehead & Dahlgren, 2006). Enhanced inclusion in social structures and participation strategies can improve health outcomes for socially excluded groups by reducing health inequities (Wallerstein & Duran, 2006).

In this paper, we discuss the role of community organizations in contributing to action on health inequities through social inclusion. We first discuss the social determinants of health and of health inequities. We provide an overview of the impact of social exclusion on health inequities and on community capacity to address them. We explore the theoretical basis of addressing health inequities through social inclusion, both in collective action and through research strategies. We link theory to practice with examples from our experiences in community-based organizations and as researchers collaborating with community partners. We then describe the challenges of involving members of vulnerable populations, offer suggestions as to how community organizations can foster social inclusion and conclude with some directions for future research.

Social exclusion as a determinant of health inequities

Of the social determinants of health, the most fundamental is SES (Phelan & Link, 2005). That SES is a key determinant of health is reflected in the fact that: low-resourced countries account for 99% of maternal deaths, 95% of tuberculosis deaths and 80% of non-communicable diseases; child mortality before the age of five is twice as likely in the world’s poorest households; and there is a 36 year difference in life expectancy between the lowest and highest income countries (WHO, 2012). Researchers generally agree that the greater the degree of socioeconomic disparity is within a society, the greater the health disparity (Daniels, Kennedy, & Kawachi, 1999; Wilkinson & Pickett, 2006). Phelan and Link (2005) point out that despite society’s enhanced capacity to control disease and death, these benefits are unevenly distributed according to access to key resources, including knowledge, money, power, prestige and social connections.

Health inequities can be exacerbated by social policies. For example, current international drug policy aimed at eliminating the non-medical use of certain drugs affects the health and well-being of people who use these illegal drugs (Room & Reuter, 2012; Treloar, valentine, & Fraser, 2011). Such drug policy leads to criminalization and incarceration, thwarted drug-related harm reduction and health promotion efforts, and creates barriers to access health and social services for those most in need (Gupta, Parkhurst, Ogden, & Mahal, 2008; Rhodes, Singer, Bourgois, Friedman, & Strathdee, 2005; Room & Reuter, 2012). Perhaps these considerations partly explain dramatic health inequities in Canada where the prevalence of HIV among people who use injection drugs ranges from 3% to 21% compared to only 0.2% in the general population, and the prevalence of hepatitis C ranges from 51% to 77% compared to 0.8% in the general population (PHAC, 2010).

Health inequities can also be worsened by how society is organized (Neale, 2008; Raphael & Bryant, 2006). Social processes, where unequal power relationships exist, lead to the social exclusion of individuals or groups and can be characterized according to four dimensions: social, where relationships with others affect a sense of belonging within social systems; political, where power dynamics are set in policies and practices, influencing the exercise of rights, access to services, and opportunities to participate in public life; cultural, where values, norms and lifestyles are either accepted and respected or stigmatized and discriminated against; and economic, where access to and distribution of material resources is influenced by the economic philosophy and practice of society (Popay et al., 2008).

The dimensions of social exclusion can be illustrated with our example of illegal drug use. Socially, politically and culturally, the international prohibition of some drugs has led to the stigmatization and social exclusion of those who use them since the degree of social acceptability of specific drugs varies based on its legal status, the prevalence of its consumption, and the perceived severity of its harmful effects (Room, 2005). The stigma associated with the use of illegal drugs can lead to the exclusion of people who use drugs from social structures where decisions are made that affect their lives (Room, 2005; Whitley, 2005). Economically, stigmatization can lead to loss of status, potentially worsening an individual’s SES (Link & Phelan, 1995). This is an important consideration given that lower SES is associated with worse outcomes from substance use (Room, 2005) as well as with adverse health outcomes, as discussed previously.

This complex array of determinants of inequities are germane to understanding how social positioning affects access to societal level resources and how social exclusion has left certain populations vulnerable to health inequities. Social exclusion is thus an important determinant of health inequities and can hinder actions and resources available to address health and social inequities (Labonte, 2004).

Addressing health inequities through social inclusion

Social inclusion refers to community participation and development (Labonte, 2004, 2009). Addressing health inequities through the social inclusion of vulnerable groups entails striving for equity both in health care services and in health outcomes. ‘[E]quity in health implies that ideally everyone could attain their full health potential and that no one should be disadvantaged from achieving this potential because of their social position or other socially determined circumstance’ (Whitehead and Dahlgren, 2006, p. 5).

When policy is informed by principles of social justice such as fairness, equality of opportunity and liberty of political participation, opportunities are created for societal action to address health inequities (Daniels et al., 1999). Based on guiding principles which include human rights and participation (International Harm Reduction Association, 2010), harm reduction has emerged as a pragmatic approach to reduce the ill-health effects from drug use, including the transmission of HIV and hepatitis C, by providing health services such as needle exchange programmes to people who inject drugs (Marlatt & Witkiewitz, 2009). With this harm reduction orientation, Portugal introduced the decriminalization of use and possession of drugs in 2001, which resulted in a reduction in problematic substance use, drug-related harms and overcrowding of the criminal justice system (Hughes & Stevens, 2010).

Addressing health inequities has become a worldwide priority. The WHO’s CSDH (2008) launched a call for action to governments, civil society, the voluntary and private sectors to address health inequities. To close the gap in health inequities, social inclusion through community participation is specifically identified as a strategy. Through shared power and inclusion in decisions that affect their lives, community members gain a voice and opportunities to make decisions in their best interest and that of their communities (Bess, Prilleltensky, Perkins, & Collins, 2009).

Enhanced participation strategies can improve health outcomes for socially excluded groups, though evidence is sparse (Attree et al., 2011; Wallerstein & Duran, 2006). There is evidence, however, that including people who use injection drugs in decisions related to programmes improves the relevance, acceptability and accessibility of programmes, which leads to reduced drug use risk behaviours (such as sharing needles) and unsafe sexual practices, as well as improved life conditions, improved health and well-being and a better capacity to lead a self-determining life (Ti, Tzemis, & Buxton, 2012). One literature review on community engagement also revealed that ‘the majority of “engaged” individuals perceived benefits for their physical and psychological health, self-confidence, self-esteem, sense of personal empowerment and social relationships’ (Attree et al., 2011, p. 250).

Social inclusion aims to ‘move away from expert-driven policy-making models towards processes that facilitate two-way information flow, and in doing so transfer some decision-making power to citizens’ (Masuda, McGee, & Garvin, 2008, p. 360). Theoretically, social inclusion in decision-making structures challenges the distribution of power within social structures by reducing power inequities (Minkler & Wallerstein, 2008). Thus, social inclusion has the potential to transform group members from ‘powerless’ subjects into active participants in decisions that affect their lives (Bess et al., 2009; Masuda et al., 2008).

Sociologist Michel Foucault (1982) argued that power operates in relations between individuals or groups. Power is exercised through social relations whereby an individual’s or group’s actions have an effect on others’ actions; where there are power imbalances, this exercise of power can control, oppress or constrain others (Kannabiran & Peterson, 2010). Foucault sees power relations as a ‘web of discourses and practices found in institutions, communities and families, and exercised through actions in multiple relationships’ (Wallerstein & Duran, 2008, p. 34). Shifting power relations and decision-making structures into partnerships, where community members hold the majority of decision-making seats and have equality of voice and absence of coercion, can contribute to their social inclusion in decision making (Arnstein, 1969; Barros, 2010; Minkler, 2010).

To change power relations requires that all partners commit to a process of self-reflection and cultural humility (Chávez, Duran, Baker, Avila, & Wallerstein, 2008; Wallerstein & Duran, 2006) ‘to recognize [their] own cultural beliefs and assumptions to break through commonly held assumptions and stereotypes getting in the way of truly being able to be “competent” or “sensitive” in another’s culture’ (Chávez et al., 2008, p. 100). This challenging process enables the transformation of social relations and building of alliances across differences by redressing power imbalances and creating an inclusive environment based on mutual respect, equity and trust (Chávez et al., 2008). Partners must also work within each other’s different agendas and politics (Rhodes, Malow, & Jolly, 2010) and embrace the discomfort that comes with the acknowledgement of the economic, social, cultural and political inequities that are at the root of oppression (Chávez et al., 2008; Popay et al., 2008; Wallerstein & Duran, 2006).

Power relations in research are increasingly being addressed through social inclusion and community participation (Barros, 2010; Israel, Schulz, Parker, & Becker, 1998, 2001; Minkler, 2010). In high-income countries such as Canada, empirical knowledge and the researchers that produce it hold a powerful place in public discourse, whereas those with other forms of knowledge (e.g. experiential knowledge) are not necessarily given the same recognition and power (Kogan, 2005; Piggin, Jackson, & Lewis, 2009). Community members have traditionally been excluded from the production of academic knowledge and have had little or no decision-making power in this regard. By democratizing knowledge production by including community members in the research process, power is distributed through more equitable community-academic relationships.

Participatory action research (PAR) combines community participation, ‘conscientization’ and equalization of power among academic and community players in an ongoing process towards social and structural change (Carroll, 2004). Freire’s (1970) idea of empowerment education, or ‘conscientization’, involves initiating a dialogue among research partners, in this case academic researchers and community partners, creating a collective knowledge based on experiences and interpretations, and uncovering the root causes of the community’s social location (Travers, 1997). This raising of consciousness allows community participants to identify ways to make changes to their situation and empowers them to transform their reality (Travers, 1997). As a collaborative approach to research, PAR addresses a research topic of importance to the community and combines knowledge and action for social change to improve community health and reduce health inequities (Minkler & Wallerstein, 2008).

PAR strategies involve community partners in all stages of the research process and challenge power structures and inequities through a more open, inclusive and democratic process (Flicker et al., 2009). PAR strategies are now commonplace in research with socially excluded groups such as people living with HIV/AIDS, sex workers and people who use drugs. PAR’s key principles include collaborations that stimulate co-learning, research efforts that build on the strengths and resources within the community, the integration of knowledge and action for the mutual benefit of all partners and a long-term commitment by all to address health issues (Israel et al., 2001; Wallerstein & Duran, 2006).

With these theoretical concepts in mind, we now explore how community organizations have implemented social inclusion in both collective action efforts and in research settings to reduce health inequities.

Putting theory into practice in community organizations

Community organizations can play a key role in contributing to the call for action on health inequities through social inclusion. Community organizations take many forms and arise when groups of people ‘constitute themselves in various historical contexts using the notion of community’ (Ng, Walker, & Muller, 1990, p. 14). Community organizations can strive for increased equity in decision making to contribute to the transformation of the conditions of their members’ lives (Minkler, 2010; Ng et al., 1990).

To link theory to practice, we draw on our experience in working in community organizations as well as on our ongoing collaborations as researchers with several community organizations, including HIV/AIDS service organizations, organizations of people who use drugs and agencies serving sex workers. We explore the benefits and challenges of social inclusion in both collective action and research strategies.

Social inclusion in collective action

Social justice-oriented community organizations are well positioned to foster more equitable power relations through participatory processes which can enhance genuine social inclusion and empowerment among groups affected by health inequities. In community organizations, genuine social inclusion can bring the most disadvantaged in society together in their struggle against injustices, build local leadership and give people a greater sense of control over their lives (CSDH, 2008).

With roots in the gay and lesbian liberation movement, the HIV/AIDS movement has been particularly attentive to issues of inclusion in decision-making power (Roy & Cain, 2001). Groups have organized to represent the interests of people living with HIV/AIDS and have led the development of the Greater Involvement of People Living with HIV/AIDS (GIPA) principle (UNAIDS, 1999) in decisions that affect their lives. The Canadian AIDS Society (CAS), a coalition of grassroots HIV/AIDS organizations, adheres to GIPA and formally recognizes an annual Forum for people living with HIV/AIDS where delegates propose resolutions to the board of directors comprising a majority of people living with HIV/AIDS. These resolutions guide the ongoing work of CAS and its member organizations (CAS, 2011a; Roy & Cain, 2001). Though it is an ongoing challenge to ensure the variety of voices of people living with HIV/AIDS is represented, GIPA is now institutionalized into the structures of HIV/AIDS organizations in Canada (Roy & Cain, 2001). The degree of leadership and involvement of people living with HIV/AIDS varies greatly, as does their role within a community organization. For example, it took three years for CAS to change its governance structure to ensure that people living with HIV/AIDS had a significant number of seats on the board of directors. Progress regarding GIPA is still evolving (CAS, 2003). HIV/AIDS organizations have the responsibility to ensure resources are available and accessible for them to embrace the GIPA principle (CAS, 2005, 2011b).

The PEERS Victoria Resource Society in Victoria, British Columbia, was established in 1995 by former sex workers and community supporters. PEERS first provided services to 98 clients; in 1999, the number had risen to 500 and has continued to grow at the same rate in subsequent years. Part of the frontline agency’s mission is to empower, educate and support sex workers by working to improve their safety and working conditions, assisting those who wish to leave the sex industry, increasing public understanding and awareness of the issues sex workers face daily and promoting sex workers’ experiential voice (Jansson, Benoit, Casey, Phillips, & Burns, 2010). Its services are designed, developed and implemented by sex workers in collaboration with non-sex workers who are committed to PEERS’ core values. The services are based on the needs of sex workers and on a harm reduction approach driven by each individual’s needs. For most of its nearly 30 year history, the agency has been headed by someone with a sex work background (PEERS Victoria Resource Society, 2010). Sex workers in Canada have organized under the Canadian National Coalition of Experiential Women (CNCEW), a consortium of women committed to the advancement of equality and human rights for sex workers (Phillips, Casey, & Leischner, 2011; Strega, Casey, & Rutman, 2009). CNCEW carried out research with sex workers across Canada to identify their health and safety needs. They identified the lack of appropriate drug treatment services that focused specifically on issues related to working in the sex industry. As a result, in 2006, the CNCEW developed, piloted and tested a drug treatment programme based on a harm reduction model in an inpatient and outpatient setting. This is one example of how research findings translated into policy and practice. This model is now being used in social service agencies and treatment centres nationally and internationally (Strega et al., 2009). Researchers and community organizations are currently working to enhance genuine participation of sex workers nationally and to improve health outcomes. The identification and increasing availability of non-judgemental sexual health care in Canadian urban areas has resulted in high levels of HIV and STI testing among sex workers and medical follow-up when tests are positive. Yet much work remains to be done on this front.

The criminalization and stigmatization of illicit drugs has contributed to the derogation of people who use drugs (Strike, Myers, & Millson, 2004). Internationally, groups of people who use drugs have self-organized to promote their health, safety and human rights and challenge social and political injustices that perpetuate health inequities (Friedman et al., 2007). In Canada, in the spirit of ‘Nothing about us without us’ (Jürgens, 2005), peer-based organizations of people who use drugs have organized in several provinces and have mobilized into a Canadian Association of People who Use Drugs (CAPUD, 2012). CAPUD stands for social justice, advocates for human rights for people who use drugs and works to eliminate their discrimination, criminalization, stigmatization and isolation. One of CAPUD’s member groups, the Society of Living Illicit Drug Users (SOLID) in Victoria, British Columbia, was founded by and for people who use drugs. Since 2006, an academic researcher (Pauly) has assisted SOLID with attaining funding for peer run harm reduction education and services. In 2010, in collaboration with AIDS Vancouver Island, a local AIDS service organization, SOLID developed a peer-based Street College to engage people who use drugs in educational projects that confront stigma related to drug use and build skills in peer support, advocacy, prevention and leadership. Graduates from the leadership stream now run Street College and have organized local peer convergences. In 2013, with support from academic researchers (Pauly and Belle-Isle), research funding was obtained to host a national meeting of peer run organizations. The meeting was planned by a peer steering committee in collaboration with a national advisory committee of peer run organizations, with the support of allies. Through such initiatives, people who use drugs have enhanced their leadership capacity and social action to improve their quality of life.

These are examples of social movements that have evolved into community organizations that engage those impacted in a common or shared vision for action on social exclusion. Despite the advantages of social inclusion, many factors make it challenging to implement. The mere inclusion of people from historically excluded groups is not adequate and can have unintended effects (Labonte, 2009). Further, community engagement may lead to exhaustion and stress due to the time, energy and resources required to participate (Attree et al., 2011). This phenomenon has been documented in GIPA, where participation was hindered by the lingering stigma associated with HIV, by health-related challenges for participants and preference for formal education (Travers et al., 2009). Similarly, sex workers and people who use drugs may be faced with health challenges and even daily survival.

We need to consider who actually benefits from participation and whether their inclusion contributes to the exclusion of others. The HIV/AIDS movement has facilitated participation of people living with HIV/AIDS by valuing lived experience, providing training and mentoring opportunities, financially compensating participants and accommodating their health needs (Travers et al., 2009). Sex worker organizations have successfully negotiated strategies that provide genuine peer researcher roles to sex workers and have mobilized to offer free vocational training and alternative employment opportunities for sex workers desiring to leave the industry (Jansson et al., 2010). Similar strategies have been used with people who use drugs. We need to remain attentive to socioeconomic and political processes and structures that exclude groups despite our participatory values, especially given that participatory processes are increasingly implemented as an inclusive and equalizing activity by community organizations.

Participatory measures are central to the advancement of an empowerment agenda to challenge existing power hierarchies (Bess et al., 2009). Participation alone does not erase inequities in power and resources. Community members’ participation is rendered inadequate in situations when they are given an opportunity to voice their opinions but are not given any decision-making power, resulting in tokenism rather than citizen power (Arnstein, 1969; Bess et al., 2009). In addition, whereas community organizations might be acting externally in accordance with concepts of inclusion, they might be reproducing organizational practices of inequity internally (Barros, 2010). For example, it may be difficult for service providers with dominant values of helping, caring and serving to break free from their historic role of human service delivery and associated power and authority, particularly when the relationship between service provider and client has also been entrenched and reinforced by expectations from those receiving services (Bess et al., 2009).

Organizations also face conflicts between their mandate as a service organization that is in part driven by funding and their ability to advocate for social change. Many agencies serving people facing housing challenges, for example, are partly or fully funded by government, which hinders their capacity to criticize government for lack of investment in social housing. Mobilizing people might jeopardize government funding if the actions taken are in opposition to government policies such as welfare reform and privatization of housing markets. Such situations can also raise tension between managers, staff and people involved in the organization who might have to weigh different priorities or have different advocacy and social justice ideals.

Finally, the participation of historically excluded people might be hindered by their fear of disclosing their disadvantaged position, sex work status, drug use, housing status, HIV status, negative attitudes towards them and poor health (Roy & Cain, 2001). These barriers might be amplified by poverty, violence, gender inequity, homophobia and other forms of prejudice (UNAIDS, 2007). Participatory processes are needed to address these challenges, transform social structures to be more inclusive and address health inequities.

Despite the challenges of including community members, community organizations are ideally placed to foster participation. They can equip local groups with principles and strategies to enact participatory processes for collective action to lead social change (Kwon, 2008). For example, CAS launched a tool kit to assist people living with HIV/AIDS in developing basic skills to become more involved in their communities (CAS, 2010). The Canadian HIV/AIDS Legal Network has also developed a resource with practical guidelines for including people who use drugs in collective action (Jürgens, 2005). Perhaps the area in which social inclusion has most been adopted by community organizations is through PAR, which is discussed next.

Social inclusion in research

For community organizations, PAR can provide information for programme innovation and improvement as well as evidence of performance accountability, and enhance funding sustainability (Benoit, Jansson, Millar, & Phillips, 2005; Wallerstein & Duran, 2006). Inclusion of community members in the research process can be enhanced by valuing their lived experience, providing training and mentoring opportunities, financial compensation, building trust and accommodating their needs (Benoit, Jansson, Casey, Phillips, & Burns, 2011; Travers et al., 2009).

Despite the benefits of PAR, there are ongoing challenges with this approach. Research interests might vary between university researchers and community partners and control of the research agenda needs to be carefully negotiated (Benoit et al., 2005; Wallerstein & Duran, 2006). Trust needs to develop between partners and about the process, which can be time consuming and can be eased with long-term commitment (Benoit et al., 2005). Obtaining ‘true’ community representation can be difficult as no community is homogeneous (Wallerstein & Duran, 2006). The role of power and privilege needs to be carefully considered in such partnerships, where the expert, scientific knowledge might need to yield to less empirically supported, and more culturally supported interventions, theories, practices and programmes that emerge from communities (Wallerstein & Duran, 2006). Power and privilege issues related to racism, sexism, homophobia, heterosexism and other forms of discrimination might also come into play in the partnership dynamics, requiring everyone to be reflective and aware of potential ‘hidden voices’ in the process (Israel et al., 1998; Wallerstein & Duran, 2006). Our support of SOLID with their peer national meeting provides a powerful example of this shift in power and privilege. As health equity researchers, we see this is an exciting shift away from a researcher-led project towards a peer-led, researcher supported dynamic. This adjustment has required group reflection and honest dialogues about decision-making power and governance structures and the role of conducting research in relation to peer-led priorities.

On the other hand, community organizations often have limited resources and competing demands that impede their capacity to engage in PAR (Benoit et al., 2005; Flicker et al., 2009). They might not have much experience or expertise in research, might have difficulty finding academic partners or might not be convinced of PAR’s usefulness (Benoit et al., 2005, 2011; Flicker et al., 2009). Community organizations could enhance their members’ capacity to engage in PAR by providing networking opportunities, disseminating information about PAR and funding opportunities and providing useful tools and training to assist them with the process.

One such tool is the hiring of ‘knowledge brokers’ as part of community-academic research projects. These are typically paid research staff temporarily released from community organizations whose focus is linking community agencies with researchers, facilitating their interaction so that they are able to better understand each other’s goals and professional cultures, influence each other’s work, forge new partnerships and promote the use of research-based evidence in decision making (Lomas, 2007). Knowledge brokers find the right ‘players’ to influence research use in decision making, bring these players together, create and help to sustain relationships among them and assist them to engage in collaborative problem-solving (Greenhalgh, Robert, Macfarlane, Bate, & Kyriakidou, 2004). They also assist partners to identify knowledge utilization and translation opportunities throughout the research process and identify and assure that research opportunities prioritized by community are included as the research project develops and matures (Lomas, 2007). In our own PAR projects (Jansson et al., 2010, p. 139), ‘it eventually became apparent to us that such knowledge brokers could play a pivotal role in helping us keep the research attuned to the needs of our hidden, marginalized, and highly transient research populations over the … course of … research.’ Knowledge brokers need formal supports and sufficient resources to carry out their roles, as well as time to become familiar with the operations of the academic and non-profit worlds and regular face-to-face meetings. Some knowledge brokers also appreciate opportunities to co-author presentations and research papers as well as ongoing education opportunities that enhance their complex combination of networking, research, policy and practice skills. In a research project with SOLID on addressing problems of stigma and drug use in hospitals (Pauly et al., 2013), Pauly engaged SOLID’s staff person to act as a knowledge broker, which greatly facilitated SOLID’s role as an advisory group. A paper outlines the use of knowledge brokers in this context (Mollison et al., 2013). Similarly, knowledge brokers from community agencies were actively involved as supporters and allies in planning and hosting the national meeting of peer run organizations for people who use drugs.

Despite its many challenges, the demand for PAR appears to be rising in Canada, both from communities themselves who want to be involved in research, and from funding and governing bodies that are increasingly requiring participatory research (Benoit et al., 2009, 2011; Flicker et al., 2009). There are now emerging strategies and tools to improve PAR’s capacity to authentically engage vulnerable groups in the research process, some of which we have outlined above.

Conclusion

The health burden experienced by vulnerable populations is largely driven by inequities shaped by oppressive social conditions and structures that have led to social exclusion (Flicker et al., 2009; Popay et al., 2008). These conditions affect access to social and health services and have an impact on health outcomes (Benoit et al., 2011; Jansson et al., 2010). Consequently, marginalized groups bear the brunt of the burden of societal illness and disease (Benoit, Zadoroznyj, Hallgrimsdottir, Treloar, & Taylor, 2010; Flicker et al., 2009). Social inclusion is well suited to contribute to addressing health inequities.

In this article, we have explored the dynamics of social inclusion to better understand the role of community organizations in contributing to the call for action on health inequities. Increasingly, there is recognition that inequities are driven by unequal power relations which can be addressed by enhancing participatory processes in research, policy and programme development.

Addressing health inequities requires a vision of social change aimed at overcoming determinants of inequities that negatively impact excluded individuals’ health and life chances. Community organizations are in a good position to assist these community members in being included in processes that affect their lives. More research is needed on how community members can best be actively involved. Building on previous work (Benoit et al., 2005, 2011), we plan to conduct future research on how community organizations can do this and contribute to more equitable health and social conditions overall. More research is also needed to better understand whether inclusion is actually leading to better health for communities disproportionately affected by health inequities. Knowledge on the dynamics of power relations in contexts where community members participate would also be useful to determine whether power is actually being shared and whether inequities are still being reproduced despite best intentions.

Footnotes

Acknowledgement

The authors thank Mary Brydon-Miller for leading the review process of this article. Should there be any comments/reactions you wish to share, please bring them to the interactive portion (Reader Responses column) of the website: .

Funding

The first author received scholarship from the University of Victoria’s Department of Sociology, the Doctoral Research Award from the Canadian Institutes for Health Research’s HIV/AIDS Community-Based Research General Program, the University of Victoria’s President’s Award, and the Centre for Addictions Research of BC Interdisciplinary Substance Use and Addictions Research Graduate Bursary.

Author biographies

Lynne Belle-Isle is a PhD Candidate in the Social Dimensions of Health Program at the Centre for Addictions Research of BC, University of Victoria. She has worked as a National Programs Consultant at the Canadian AIDS Society since 2004, and chairs the Canadian Drug Policy Coalition. She is collaborating with the Society of Living Illicit Drug Users (SOLID) and the Drug Users Advocacy League (DUAL) for her PhD research, a critical ethnographic inquiry into power relations in committees where people who use drugs are included at the table where decisions are made that affect their lives.

Cecilia Benoit is a Professor in the Department of Sociology and Scientist at the Centre for Addictions Research of BC. Apart from research focused on the occupation of midwifery and the organization of maternity care in Canada and internationally, she is involved in a variety of projects that employ mixed methodologies to investigate the health of different vulnerable groups, including Aboriginal women in Vancouver's Downtown Eastside, young people confronting health stigmas linked to obesity and asthma, street-involved youth in transition to adulthood, workers in lower-prestige service occupations, adults in the sex industry, and pregnant and early parenting women dealing with addiction and other challenges.

Bernadette (Bernie) Pauly is an Associate Professor in the School of Nursing and Scientist with the Centre for Addictions Research of BC at the University of Victoria. Her research is focused on promotion of health equity for groups affected by structural disadvantages associated with substance use and homelessness and strengthening of public health services. Her research has focused on evaluation of harm reduction strategies, public health services and housing interventions to address the twin harms of substance use and homelessness. She is a research collaborator with SOLID (Society of Living Illicit Drug Users), Victoria Cool Aid Society and the Greater Victoria Coalition to End Homelessness.

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