Windows of Opportunity: Integrated Hepatitis C Programming Approaches for Priority Populations

 

Organizational recommendations

The following recommendations detail the organizational-level approaches and mechanisms that are key success factors in the development of integrated models of care that are accessible, relevant and effective in addressing hepatitis C.

Organizational recommendation #1: Ground inter-agency and cross-sectoral partnerships for hepatitis C programming in a common visionand goals

A key success factor in achieving integration and collaboration between agencies is the development of a shared vision and goals. Organizations that come together and develop a common vision and methods for evaluating success have greater incentive and structural support to work cohesively toward a common end-point or goal. The Toronto hepatitis C program provides a good example of how various agencies developed a unifying vision and common accountability mechanisms.

Developing shared goals is useful for partnerships between specialist and primary care organizations, and it is important for partnerships between multiple sectors and stakeholders, including those focused on correctional services. Collaboration and partnership with correctional services and organizations involved in post-release programs/reintegration is essential to serving the prisons population - a priority population that is currently underserved.

Organizational recommendation #2: Create organizational partnerships and structures to foster a client-centred multidisciplinary team-based approach for hepatitis C services

A key success factor in achieving comprehensive, client-centred hepatitis C services is ensuring seamless access to multidisciplinary care. Working with a comprehensive range of service providers from a variety of disciplines and specialities is important but not sufficient to develop integrated and cohesive team-based models. It can also be useful to intentionally structure an interdisciplinary team-based approach through organizational partnerships or by having staff from different sectors work from a shared case model. It can also be helpful to offer learning exchanges and other internal team activities to increase the sense of a shared culture and shared work.

The Toronto hepatitis C program model is based on an interdisciplinary team-based approach to hepatitis C. Case managers are assigned integrated caseloads and manage multidisciplinary staff teams.

Organizational recommendation #3: Develop structures of community governance and embed health equity into organizational values and vision

An essential element of success in developing integrated, client-centred models of hepatitis C care is organizational capacity for flexibility and responsiveness to community needs. Organizations often develop programs and approaches based on needs within communities, but community-level needs and realities often shift over time. As such, having organizational capacity to adjust priorities and approaches to remain relevant and effective is critical.

Processes that include inviting ongoing evaluation of organizational relevance and effectiveness embed change and responsiveness within organizational structures and allow for responsive programming. Having an organizational mission that is underpinned by health equity allows organizations to be flexible and to change over time in an effort to align with community needs and strengths. Similarly, being community-based and community-governed through community-led boards and advisory committees fosters responsiveness to community needs.

ASK Wellness Centre

An organization highly responsive to changing community needs: Redefining the continuum of care

The ASK Wellness Centre in Kamloops, BC, formerly an AIDS service organization, is an example of an integrated organizational model that addresses the broader determinants of health. Expanding its services and mandate to address the changing needs of its service users, this agency is now a hub for people with mental health and substance use issues, who are often homeless. The organization no longer focuses on blood-borne infections in isolation but, rather, serves anyone who needs housing and/or mental health services. Housing, employment and education are now part of ASK’s continuum of care. Hepatitis C (and HIV) prevention, testing and treatment services are addressed as needed, but they are no longer entry points for services.

Organizational recommendation #4: Invest in community systems strengthening1

“Both urban and non-urban settings have a reliance on goodwill instead of good systems to make things happen and the commitment of a few to move things forward. We don’t have a systems approach. We rely on this history of charitable approach because of the communities we are talking about and because they are not seen as deserving. That is the fight that we have collectively.” – Meeting participant
“All of the models that were presented had individuals with a lot of passion ready to push the edges. In talking about models and transferability we need to recognize that some models only work because of the over-dedicated commitment of the people who are pushing the boundaries.” – Meeting participant

Organizations and individuals engaging in integrated, client-centred and health equity oriented hepatitis C care do so, primarily, from a place of goodwill rather than because they are supported and enabled to do so within health systems. It is precarious and unsustainable to depend on the exceptional persistenceof a few committed individualswho are willing to work in an under-resourced, under-supported fashion. It is also difficult to scale up these approaches and replicate models that fundamentally require an exceptional commitment without structural/systemic support.

Organizational recommendation #5: Explore alternative funding that allows for internal resource distribution and incentive structures that promote integration and health equity

One of the benefits of developing integrated and comprehensive models of hepatitis C care is that it provides an opportunity to apply for funding from sources that do not traditionally fund health services, including funders that support housing, employment, arts, culture, etc.  As described by a meeting participant, “The benefits of integration include diversification of funding strategies. You can seek funding from a diversity of kinds of funders and be resilient to funding changes.”

Funding from the pharmaceutical industry is one option for expanding fiscal resources and realizing some freedom for creativity in terms of payment structure and internal resource allocation. However, careful consideration should be given to ethical issues inherent in accepting funding from pharmaceutical companies and other industries for which core impact and approach may be counter to equity and justice. It is important for organizations to understand the implications of working with industry and to ensure that internal strategies intentionally focus on them.

Public funding presents its own set of challenges and ethical dilemmas. Often public funds come with specific expenditure limitations defined by very narrow parameters.  Accepting public funding may limit an organization’s ability to engage in political advocacy around issues of health equity. As expressed by one meeting participant, “We are truly in crisis because it’s the public funders that we rely on to do this work that attach the strings to us like marionettes and force us to think about integration in a wholistic way when they haven’t evolved to the notion of wholistic the way we have. Funding is dependent on our disease-based models and we call it a population-based approach.”

A key factor of success is investment(s) in changing the underlying systemic problems within health systems that de-incentivize working with marginalized populations and de-incentivize creating integrated, client-centred models of care. This requires that organizations invest in the capacity to unpack systemic problems and develop strategies for change: it requires organizations to become experts in community systems strengthening.2 Staff may not have the skills required for systems analysis and/or systemic change. Investing in these skills and abilities and partnering with organizations where these skills exist is essential to the development of a sustainable, resilient and cohesive response to the hepatitis C epidemic.

Organizational recommendation #6: Strive for a salary-based compensation structure and invest resources in fairly compensating peers and other non-traditional healthcare providers

A key factor for success at the organizational level is investing resources to adequately compensate and incentivize service providers and teams to spend the necessary time to ensure a coordinated and comprehensive approach to client-centred care. While there have been innovations to develop strategies and models to address hepatitis C that are integrated, comprehensive, multidisciplinary, trauma informed, culturally safe and health equity oriented, traditional healthcare funding models have not necessarily adapted to reflect these shifts. As such, some of the more traditional funding structures limit the ability to develop integrated, multidisciplinary and client-driven or client-centred care. For example, the traditional fee-for-service model limits the amount of time healthcare providers can spend with their clients or spend developing partnerships with other community service organizations. A salary model of payment can be more suited to client-centred programming in these cases.

Traditional funding structures might include limited resources with which peers and/or non-traditional healthcare providers such as Indigenous healers and Elders are compensated. It is important to invest resources to appropriately compensate these individuals to support a truly multidisciplinary team.

Organizational recommendation #7: Engage a broad range of stakeholders in realizing organizational changes

Significant organizational changes may be realized by adopting an integrated, health equity and client-centred approach to hepatitis C care. For some community health organizations, population bases may remain the same, but specific partners and integration processes might be new. For AIDS service organizations that are integrating hepatitis C into their programs and services, priority populations might shift and levels of integrated care might also be novel. Each organization will be presented with specific changes, whether in its population base, its staffing, its approach to program/service delivery, or its goals. A broad stakeholder engagement process that invites service users, people with lived experience, staff and management to share anxieties, to explore the opportunities around change and to develop a unified plan is critical to change management strategies and to develop responsive programming for hepatitis C.

 Hepatitis C integration into AIDS service organizations (ASOs)

When it comes to integrating hepatitis C into ASOs’ program/service delivery, space is required to explore and address many anxieties and challenges that might arise through a stakeholder engagement process. As expressed by a meeting participant, Something we need to acknowledge is the fear within the ASOs of what’s going to happen. With Hep C, the sheer numbers overwhelm those living with HIV. What’s going to happen? Are we going to lose focus on HIV? Is HIV going to suffer? How will we honour the differences in the people. There are a lot of commonalities and co-infection but these are two different clienteles – especially if you are looking at cure. If we have a cure, we are looking at graduation and slowly weaning people off services, whereas with HIV it is a lifelong commitment to services. I want everyone to be aware of the building anxiety when we are looking at redesigning and bringing programs forward.” These kinds of questions can be explored in a stakeholder engagement process and it is also important to share solutions across ASOs.

Organizational recommendation #8: Address social determinants of health through cross-sectoral partnerships

“Pills will treat hepatitis C but will not treat the social determinants of the risk factors. This is where the entire issue of reinfection is coming up. Based on these models, until and unless we provide supportive care and scale up harm reduction and addictions services, we won’t be able to turn the tide of hepatitis C especially amongst people who use injection drugs (PWID) or people who are in the group where transmission is happening actively. That is where integration of services is an important piece of the puzzle.” – Meeting participant
“The one thing that was really important for us was to build some cultural competency within our staff and to look at what our partnerships were within our service delivery model. Many of the private sector landlords that we were working with were evicting First Nations tenants because their families were staying with them. We spoke to the landlords about what family means and worked with clients to advocate for their needs and rights.” – Meeting participant

An integrated model that is service-user centred acknowledges broader social determinants of health in an individual’s life. Through program collaboration and cross-sectoral partnerships with other services, many integrated models are assisting service users to access broader social services and supports they might need, including housing, employment, income stability and access to healthy food, settlement, legal, cultural and other services identified by clients.

Organizational recommendation #9: Address racism, stigma and discrimination through equity-oriented hiring, anti-oppression training, shifting internal power structures and public education

“The level of racism in our community is a massive barrier to care.” – Meeting participant

An anti-racist and anti-oppression organizational approach is essential in creating appropriate services for those most affected by hepatitis C, as well as ultimately addressing the root causes of health inequity. It is important to hire a diverse workforce representative of the community being served and/or to partner with organizations operated by and for those most affected. It may also be important to provide anti-oppression and anti-racism training for staff and to shift internal power relations and structures so that service users and marginalized individuals who face personal and systemic racism are given decision-making power within the organization.

It is also important to invest in efforts that challenge and shift racism, discrimination and oppression outside of the organization and within the community more broadly. Essential to shifting broader systemic root causes of inequity is engaging in public education, political advocacy and cross-movement building around decriminalization, decolonization and equity-oriented initiatives.

Addressing interpersonal and systemic racism against Indigenous peoples

In the context of addressing interpersonal and systemic racism against Indigenous peoples, it is important for organizations to place particular emphasis on learning about and responding to the realities of colonization, intergenerational trauma from the residential school system, cultural genocide, and systemic abuse. Indigenous-led initiatives and strategies to address hepatitis C are essential. For organizations that are not Indigenous-led, this might mean partnering with, investing in, advocating for, and following the guidance of Indigenous-led organizations and strategies.3

 

  • 1. Community systems strengthening is an approach that promotes the development of informed, capable and coordinated communities and community-based organizations, groups and structures and enables community-based organizations to be equal and effective partners in shaping health outcomes.
  • 2. The Global Fund to Fight Aids, Tuberculosis and Malaria. Community systems strengthening framework. Revised edition. 2014.
  • 3. Health Council of Canada. Empathy, dignity and respect: Creating cultural safety for Aboriginal urban health care. Toronto. Health Council of Canada. 2012.

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