We are pleased to publish the top 2 submissions from the second annual Section on Pediatric Trainees advocacy essay competition in the November and December issues of Pediatrics. This year’s competition asked participants to consider how we as pediatricians could best advocate for access to quality care for all children. The winning submission by Dr. Michael Mattiucci took this prompt a step further, exploring how we can empower children and their families to be their own best health care advocates. Drawing on earlier, transformative experiences in a small village in Haiti for inspiration, where youth-led initiatives were critical in helping to combat a cholera outbreak, Mattiucci argues that to have the most far-reaching impact, we must move beyond the traditional model of advocating on behalf of patients and instead adopt a more collaborative approach by advocating together with them. By partnering with our patients and their families to build a network of committed advocates, we can help to bring about meaningful and sustainable change.
I felt awful, just sitting there with the unrelenting drumming of rain on the tin roof above me. I had just hiked with a small team through the mountainous Haitian countryside to reach a remote village. We were a group of college students researching the cholera outbreak that occurred after the 2010 earthquake, and we had come to this village because it was especially affected by the disease. Soon after we arrived, it began to storm, stranding us inside a small hut on a muddy mountainside. As the rain continued for hours, I began to feel a deep sense of helplessness. I could almost see the bacteria in the water, spreading, crippling the community once again. It felt like there was nothing I could do to stop it.
But as the rain slowed and we emerged, I witnessed action in place of despair. The people in the village had already begun organizing to fight the outbreak. They were holding meetings and making plans to deliver supplies for water purification and oral rehydration.
And it was youth who took the lead.
Over the rest of my time there, I witnessed young members of the community stepping up as central participants in the response. They were distributing chlorine water purification tablets, performing educational skits, laughing and engaged, and meeting in youth groups to discuss the response and how to improve it. These youth were leading change, and it was working.1
This experience taught me the power of young people to be change makers in marginalized communities. While I sat helpless in a hut, they stood fearless in the village. Collectively, they had the power to make change that I could not on my own.
I often feel this same kind of helplessness in the examining room with my patients, who too often have complicated, challenging lives outside the walls of the clinic. As advocates, we have the ability to change those determinants of health that elude us as clinicians, but I have learned these changes are most effective if we act in partnership. Our advocacy work in pediatrics requires a new model, one that moves beyond individual advocacy and instead harnesses the power of collective action through engagement of our patients and their families.
A New Kind of Advocacy
As a new intern in pediatrics fresh off the interview trail, I am encouraged to have learned that for residencies throughout the country, advocacy has become a core component of pediatric training.2 But currently, the dominant paradigm in advocacy training places the physician at the center, as the protagonist acting on behalf of marginalized young people and their families. This approach can have incredible impact, but I believe we can do more.
As advocates for children’s health, we face growing challenges to ensuring health for all children.3,–6 Solutions to these challenges will require new, creative advocacy approaches. We must go beyond our role as expert advocates and place more focus on the voices and lived experiences of those we serve. If we are going to change health care for vulnerable youth, we need to engage vulnerable youth themselves; we must shift our approach from advocating for these children and their families to advocating with them.
Patient and Community Engagement as a Framework for Advocacy
There are 3 key domains for youth to engage in health care, based on the growing literature on patient and community engagement: (1) in their own health care, (2) in changing health care delivery, and (3) in changing health policy.7,8
The first domain may be the most intuitive; the advent of patient centeredness has allowed more patients to share power in deciding how they are cared for as individuals.9 However, patient participation can also change population health. The second domain involves patients in making decisions about how health care is organized, delivered, and evaluated.7 The third domain reaches further, involving patients in the process of creating and implementing public policies.7
Engagement, no matter where it is within the health system, comes in all different shapes and sizes. Carman et al7 outline a “continuum of engagement,” which increases from consultation, to involvement, to partnership. This continuum allows for a broad range of participation from youth, from simply providing input, to holding equal power in making decisions.
Within this framework, there are numerous ways that vulnerable youth might be included in changing health care. These include being involved on quality improvement teams; assisting in making local, state, or national health policies; or, as I saw in Haiti, participating in the development and evaluation of community-based health programs. The areas for highest potential impact for our advocacy are ones in which youth are empowered to be partners in making system-level changes.
These changes, of course, are not easy, and patient engagement takes significant time and energy. Is it worth it? The science of engagement is young, but there is some evidence that it can lead to better health outcomes, improved quality, and decreased costs.10,–12 For example, interventions that have increased patient participation have also increased treatment adherence and led to more appropriate service use.10
If more engagement is achievable and leads to better health care, where do we start?
Advocacy Training During Residency
The current approach to advocacy teaches skills that allow pediatricians to speak to lawmakers, write opinion-style editorials, and understand system-level factors that affect children’s health. These skills are incredibly valuable, but they are not enough.
To become more effective advocates for improving health care for the most vulnerable children, we need a new set of advocacy skills, skills that allow us to build the capacity of young people, their families, and our colleagues to make these changes collectively.
First, we need to learn the basic principles of community engagement, including how to recognize what level in the health system and what level of engagement might be appropriate in different circumstances. There are many existing frameworks that are used to teach these basics, including an 8-module “primer” published by the Centers for Disease Control and Prevention, which could easily be incorporated into existing advocacy curricula.13
Second, our advocacy training must include building skills in community organizing. Among these skills are learning how to recruit patients and families and how to build diverse teams that have shared goals and clear roles and responsibilities for all members. We must also learn how to facilitate the process of effective teamwork to allow all voices to be heard in developing innovative solutions.
Finally, in addition to the right training, we also need protected time to spend in the communities we serve, building relationships with young people and their families, and working on longitudinal, impactful advocacy projects. This is perhaps the most difficult piece of the puzzle and may require a deeper commitment to advocacy training by the Accreditation Council for Graduate Medical Education.
Young people have incredible potential to help change health care, especially, as I witnessed in Haiti, those who face the highest barriers to health. The growing literature in patient engagement provides a framework from which we can reorient our advocacy efforts to include youth and their families at the center of the process. Pediatricians are currently the most powerful advocates for children’s health; we must use this power to build the capacity of our patients and their families so that they instead become the most powerful advocates for their health.
Dr Mattiucci conceptualized this manuscript, drafted the initial manuscript, and reviewed, revised, and approved the final manuscript as submitted.
FUNDING: No external funding.
Thank you to Kari Mader, MD, MPH, and Elizabeth Metraux for their support and assistance in editing this article and to the youth of Alyans Sante Borgne for showing me the capacity of young people to change health care.
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.