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The Lived Experience Workforce: Why We Need Them

October 21, 2021

We don’t always get what we pay for in America.

We spent $3.8 trillion on healthcare in 2019, but we still have some of the worst healthcare outcomes in the world, from high rates of infant and maternal mortality to lower life expectancy. Moreover, some of the most vulnerable people in our society bear the greater burden of disease and death. Even before the pandemic, Black people had lower life expectancy than white people and, during COVID-19, data have shown that people of color have higher rates of infection, hospitalization, and death due to the illness. No matter where people live, where they’re from, or who they are, all people deserve the same opportunities to achieve good health.  Bridging the gap and improving health outcomes often means much more than access to insurance or a prescription alone. It requires integrating individuals with specific skills and lived experiences into the healthcare workforce, skills that a provider cannot learn in a particular medical school or program.

Some states and insurers are addressing ways to bridge the gap by innovating how they cover services for patients. These alternatives vary, but one approach to shifting the medical model of healthcare to a person-centered version includes unique and specific healthcare roles for people with lived experience. Three such roles in this healthcare transformation are Community Health Workers, Peer Specialists, and Recovery Coaches.

What are Community Health Workers, Peer Specialists, and Recovery Coaches?

  • Community Health Worker (CHW): CHW is an umbrella term representing many roles and can include individuals who provide culturally competent health education, support care coordination, and systems navigation, and help patients follow up with care plans and recommendations from providers. CHWs are trusted members–and have a close understanding–of the communities they serve, facilitating needed linkages to healthcare services and supports.
  • Peer Specialist (PS): A Peer Specialist supports individuals impacted by trauma, emotional distress, and mental health challenges to foster autonomy and self-determination. The Peer Specialist listens to the voices of individuals and helps them to be heard by their healthcare providers. This role is transformative, providing patients empowering care at a difficult or vulnerable time in their healthcare journey.
  • Recovery Coach (RC): A Recovery Coach is a person who has lived experience with addiction and is in stable recovery. Their role is to advocate on behalf of individuals with substance use, teach self-advocacy, and help those individuals develop a self-directed plan to reach their goals.

How Can CHWs, PSs, and RCs Bridge the Healthcare Gap?

The CHW model is not new. It’s been used worldwide, from China to Latin America. In the U.S., several states and insurers are making these vital healthcare roles available to clients.

Under MassHealth, the Commonwealth of Massachusetts’ Medicaid and Children’s Health Insurance Program, the state is supporting Accountable Care Organizations (ACOs) and Community Partners (CPs) by funding projects that focus on the integration of CHWs, PSs, and RCs. Through this funding, ACOs and CPs can receive support, or technical assistance, through the MA DSRIP TA Program to implement and integrate programs that help to connect patients with CHWs, PSs and RCs. As a partner to MassHealth on this project, Abt is designing, implementing and managing the technical assistance program. We’ve seen through our Pop-Up events, peer learning opportunities, and technical assistance projects that this particular healthcare workforce is adept at connecting with clients or patients, and are finding ways to collaborate with other healthcare providers, whether it’s engaging families of children and youth with special health care needs or providing culturally responsive care for recent immigrants and newcomers experiencing a U.S. hospital system for the first time.

Why These Healthcare Roles Matter

America is a diverse country. Yet, our healthcare workforce reflects a very different picture. A recent study in JAMA described how racial and ethnic minority groups are underrepresented in both the current and future healthcare workforce. Critically, CHWs, PSs, and RCs have unique and needed skillsets that facilitate connection and engagement with patients and clients that will help improve health outcomes for everyone.

CHWs, PSs, and RCs often bring diversity to the healthcare workforce, and to the understanding of what it means to truly provide person-centered healthcare.  The unique aspect of their roles is the ability to engage and welcome patients that are often forgotten by the healthcare system. When caring for people with substance use disorder, a Recovery Coach is able to identify with a patient’s struggles more so than a clinician who has no personal experience with being in recovery. A Peer Specialist can use their own lived experience with mental health diagnoses to inform the supports and guidance they provide individuals. In one example from Massachusetts, a Community Health Worker met with “Antonia,” an older immigrant woman with asthma. During a home visit, the CHW discovered Antonia’s partner had many health issues. He was unsure how to get help. The CHW was able to connect the family to social security and food assistance. They were also able to get the family a HEPA filter vacuum and other health supplies to better manage their chronic health conditions. These examples may seem insignificant but they speak to the wider social determinants of health that facilitate or hinder people from experiencing good health and well-being.

Support for the Lived Experience Workforce

Insurers and programs that cover these needed healthcare roles also require specific training and supervision for each. In Massachusetts, grants help to cover role-specific training, certification, and supervision, from an 80-hour core competency training program for CHWs plus additional training in specialties, to 60-hours for Certified PSs. These trainings not only help to expand these healthcare roles, but ensure that individuals in the lived experience workforce have colleagues who can effectively supervise them and support them as they work within the healthcare system.

The healthcare journey is often dizzying, filled with words, people, and experiences that can make it harder for patients to get the care and supports they need to be healthy. These experiences contribute to poor health outcomes and help explain why we often find disparity at the other end of what we pay for in America. Closing the healthcare gap for all people must be a shared priority. That means paying for different roles to provide critical, person-centered care and expanding the healthcare experience to include healthcare workers with lived experience. Programs need to be designed with an understanding of each workforce’s unique role and strengths. There are innovative approaches to get to better health. We just need to include them.

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