Listening to the voices of community health workers

Donna Bjerregaard

Senior Technical Advisor, Initiatives Inc.

In 1505, the Polish Parliament stated, "Nothing new without the common consent." Today we understand that ‘nothing about us without us’ is the rallying cry for inclusion and change.    

I recently returned from an international Health Systems Research Conference in Vancouver, British Columbia and then participated in a webinar entitled, “Sustaining Community Health Worker (CHW) Programs in the HIV response: Lesson Learned from the US. The single loudest cry from these events was, "Where are the CHW voices?" At CHW Central, a global resource for and about community health workers, we have over 800 international and domestic resources, but only a few address the importance of community voices.

We started CHW Central in 2011 as a global community for program managers, experts, practitioners, researchers, and supporters of CHW programs to find relevant material and kinship among users. We slowly realized our global aspirations but—I think—disregarded the huge US experience and the voices of health workers themselves.

In 2013, we broadened our website to include global and US-based resources and features.  This gave us the opportunity to use this avenue to better understand how the US and the overseas experience could provide an opportunity for mutual learning and cross-cultural understanding.    

With USAID, the USAID ASSIST Project and CHW Central, we organized a webinar to address a shared need: What can we learn from US community health worker models to support developing countries increasingly interested in national CHW programs?  Over the last 10 years, CHW associations, networks, and coalitions have emerged in various states, along with innovative models of supervision and mentoring, CHW certification, and needs-based training. Building on the US experience, we hoped to learn how HIV programs support people living with HIV (PLHIV) and gain insights into the steps needed to enrich and sustain CHW programs.          

With the help of five panelists from Wisconsin (Ana Paula Soares Lynch and Joelisa Castillo), Florida (Brendaly Rodriguez), California (Maria Lemus), and Massachusetts (Rachel Weidenfeld), we learned about the value of diversity and the importance of involving the community in the process to ensure ownership, engagement, and leadership.

The Wisconsin Department of Health (DOH) in the last three years began to understand how critical it was for CHWs to be part of the discussion and not the subject. Multicultural networks were created to support communities of color, encompassing American Indians, Africans and African refugees, and Latinos. Their goal was to ensure that CHW voices were heard. With some funding from the State Department of Health, they managed to create United Voices, a collaborative approach that led to identity building, creating a logo and strengthening leadership training and fundraising. Communities became engaged and gathered resources, held public forums, and developed their own strategic direction. Now over 300 community health workers in Wisconsin are part of the network.

Digital story telling helped them explain their approach to a wider audience.

In California, Visión y Compromiso planted the seeds of a network almost 30 years ago, with small groups of Hispanic, Asian-Pacific Islanders, African, and European immigrant communities. The communities were facing common issues, yet there was no connection among them. Bringing together the voices of men and women helped them begin to understand who they are and what they could do. Over the first four years, they formalized their community transformation model which went beyond health, raising the voice of the community and helping them identify their priorities and work together to seek solutions. Each group designed a workplan that reflects its needs. There are now 12 regions and 4,000 promotoras across California and Arizona; annual conferences generally reach 1000 attendees.

In the process, the promotora is the driver in the field; it is his/her voice that aids community integration, supports consensus, and urges them forward.  

In Florida, a different path emerged creating a coalition. CHWs began advocating for a 501(c)(3) classification which would entitle them to be a tax-exempt, nonprofit organization approved by the Internal Revenue Service (IRS). An important part of the process was understanding the role of engagement, leadership, and advocacy. Small acts such as branding, monthly calls, and face-to-face meetings became the glue. The CHWs organized a basic web page and worked with the Bureau of Chronic Disease Prevention to prevent cancer. Over time they held statewide annual strategic meetings and summits. In 2015, their advocacy strategy bore fruit, and the CHW Coalition finally became a 501(c) organization. There is now a Board of Directors—50% of whom are CHWs—and an advisory group that supports leadership. Getting there was not easy, but working with the coalition and holding annual meetings as well as regional councils were important steps. There are now 808 certified CHWs in Florida; the regional structures built by the Coalition are paying off.

In 2006, the Massachusetts General Court recognized the importance of CHWs in helping to expand access to medical insurance coverage and eliminate health disparities. Today Massachusetts has approximately 3000 CHWs working in communities and medical settings.  The model is successful when both the institution and the CHW are ready for and understand their roles. As CHWs take on the critical role of helping PLHIV adhere to treatment, they are supporting the high-risk patients. As part of a medical team, CHWs support the needs of PLHIV, conduct home visits, initiate referrals and in the process, are reducing the cost of health care.

In communities, CHWs’ voices are moving the needle toward community health.     

Each entity chose its own path; all understood that the voices of CHWs were key to ownership, engagement, and sustainability. In California, the 4,000-strong network of Visión y Compromiso united their constituents by helping them develop an identity, create regional plans, and engage county-level organizations. Wisconsin focused on building United Voices, bringing diverse communities together to address and support their issues. In Florida, the coalition sought an approach to strengthen CHW credibility through certification and support sustainability. Massachusetts’ 20-year history of working with CHWs to support PLHIV provided strong evidence for what works and how integrated medical care teams can be effective in addressing HIV needs. The focus for all these organizations has been on prioritizing CHW voices to understand and strengthen their institutions; the process was mutually rewarding.

The “Sustaining CHW Programs in the HIV Response” webinar was sponsored by USAID, the USAID ASSIST Project, and CHW Central, with funding support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Join HIFA on a thematic discussion on CHWs from January 16- February 24th and watch for the upcoming blog series on "Visions of the future" of CHWs on CHW Central


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