Collaborating to Advocate in Primary Care for Children During COVID-19

Over ∼4 months, 95 PCPs from 26 practices spanning the greater St Louis area participated in data collection, sharing data on >2000 children presenting with COVID-19–like symptoms. In the absence of a common electronic health record, the data were collected prospectively by using a 1-page form. This rapid data collection was possible because of the infrastructure of the established PBRN, which provided expertise in data collection, data entry and, when necessary, obtained data sharing agreements. Additionally, because the project was to improve care locally, it was determined not to be human subjects research by the Washington University Human Research Protection Office.

Findings from the data collection drove advocacy efforts by members of the Collaborative. In addition to sharing local data within the group, advocacy work included providing advice and resources for school boards and superintendent groups, appearing on various media platforms and communicating directly with local politicians via letters developed collectively and signed by many Collaborative participants.

Several factors were critical to the success of these advocacy activities. The urgency and commitment of the providers to support the health and wellbeing of their patients and patient families was essential. The Collaborative ensured that providers banded together to receive group support and advocated in concert together. In addition, infectious diseases specialists provided the most up-to-date knowledge and expert opinion, shared local and national data as they became available, and participated in the advocacy work. These specialists worked diligently to address providers’ concerns in real time via the listserv and through webinars. The uncertainty of the times meant prompt dissemination of shared new knowledge was critical for participating pediatric care providers, and this was a strong motivator for participation and ongoing engagement in both pediatric care and advocacy.

The infrastructure provided by the PBRN was also important. Relationships among local pediatric care providers and the PBRN were long-standing and tested. The PBRN has existed for almost 20 years and was trusted by the community of pediatric care providers to deliver help and support. This partnership facilitated prospective data collection and storage of published articles, reports and other resources that were relevant for providing optimal care, advice, and advocacy (http://wupaarc.wustl.edu/). The Collaborative served as a platform to organize members in rapid deployment advocacy activities. Letters to local politicians were developed collectively via the listserv, and resources for school boards were shared via the PBRN Web site. Importantly, many members of the Collaborative already had relationships with local politicians and other key decision-makers from past advocacy efforts. These long-standing trusted relationships between elected leaders and pediatricians provided greater access for discussion about pediatricians’ concerns and sharing of local data.

Advocacy to increase access to SARS-CoV-2 testing through the local hospital system was unsuccessful for many months. However, PCPs increasingly provided in-office specimen collection for testing at private laboratories, supporting each other with information about local laboratory resources, PPE purchasing, and advice about operationalizing telemedicine and parking lot visits. This alternative strategy rapidly increased pediatric access to testing in the community.

Regarding advocacy work to promote safe in-person school and day care attendance, 3 activities seemed especially impactful: (1) a letter in late July, signed by >70 pediatric providers and sent to 2 St Louis Congressional Representatives; the letter advocated for more rapid use of the Coronavirus Aid, Relief and Economic Security Act funds to expand SARS-CoV-2 testing and contact tracing; because some of our Collaborative members had long-standing relationships with elected officials, the letter was followed by a phone conversation on next steps; our members of Congress then worked with local political officials to improve partnership and communicated back directly to the Collaborative; (2) a letter sent in August to the Saint Louis County Executive advocated for in-person school; the letter was signed by close to 100 pediatric practitioners and addressed school mitigation strategies of masking, social distancing, and PPE and cleaning supplies for schools. In addition, the letter called for limiting large gatherings and closing facilities associated with disease spread (bars, indoor gathering sites) while maintaining in-person school. Pediatricians reinforced the letter with media work on television and radio; this led to dialogue with the county executive and greater pediatric representation in workgroups that included school superintendents and the metro-wide COVID-19 task force; (3) in early November, we developed a one-page document outlining the results of the Collaborative data gathering project; the document was presented to local public health officials, political leaders, and school officials in various meetings; it highlighted the lower rate of positive test results for children in school and day care, supporting the idea that local daycares and schools could be open safely; this one-page document sustained in-person school for some districts and aided in future in-person openings for other school districts; pediatricians reinforced these results through continued engagement with local school boards, private schools, and superintendent group meetings.

Our experience revealed that important and successful advocacy work by community pediatricians can occur through a timely response to urgent needs. The goal of our project was to provide optimal care and improve access to in-person school and day care for local children during the COVID-19 pandemic. It involved organizing pediatric care providers to follow best practices that were constantly changing, standardizing testing recommendations during a confusing time when consensus for pediatric patients was lacking, and collecting data to inform future decision-making for schools and daycares. Although not originally planned, all of these activities provided opportunities for local PCPs to use their shared knowledge to advocate widely in our community for improved outcomes and opportunities for children. This advocacy supported local school leaders and public health officials to help most local schools open.

Our project revealed that pragmatic collaboration between community-based PCPs, academically affiliated pediatric infectious diseases experts, and a PBRN led by academicians could effectively organize advocacy efforts during the COVID-19 pandemic. National organizations like the American Academy of Pediatrics and the American Medical Association have provided structure and resources to support physicians in caring for patients during the pandemic.^18,19  The American Academy of Pediatrics has advocated at the federal and state level for financial relief for patients and providers, access to testing, and increased resources for schools, and it has encouraged pediatricians to engage in advocacy efforts such as signing letters to state and federal politicians. However, in many communities, decisions about school opening during the COVID-19 pandemic are being made at the community level and have been influenced by both local positivity rate and transmission dynamics as well as local politics, including school boards. Our advocacy work in this area was community based and rooted in what pediatricians were seeing “on the ground” as the pandemic unfolded, and it was supported by local data that aligned with the growing body of literature in the United States about the safety of in-person school.^20–23  The need for advocacy was clear to providers, and, therefore, strategies were quickly developed, shared through listserv discussions, webinars, and other means and then rapidly deployed for action. Many members of the Collaborative already had ongoing relationships with local politicians and school boards from previous involvement, so these were leveraged to increase pediatrician influence on groups making decisions at the local level. Both newly forged and ongoing relationships were critical to the success of the advocacy activities reported here.

The Collaborative listserv is now cemented in our community as a collegial network that offers an effective platform for timely problem solving and support. As of June 14, 2021, the total number of participants on the listserv is 447. Providers continue to answer questions and share information, and experts are consulted for advice. For example, in response to recent questions and discussion about care for pandemic-related mental health issues for children and teenagers, Dr Katie Plax, an expert in adolescent medicine and a listserv participant, provided 2 webinars covering care of patients with anxiety and suicide risk assessment, each attended by >50 PCPs. These timely webinars were especially relevant because recent data reveal that emergency department visits for suspected suicide attempts among children aged 12 to 17 years has dramatically increased during the pandemic.²⁴  Our PBRN has disseminated resources and tools to support primary care management of depression and anxiety through the listserv and is conducting interviews with providers to describe their experiences in providing mental health care during the pandemic. We will use this next round of local data to advocate for needed services for children in our community.

While working together to provide optimal care for families in the face of great uncertainty, our Collaborative accomplished many advocacy goals focused on the needs of children and families during the COVID-19 pandemic. We conclude that timely advocacy efforts can be effective when pediatric providers, both community and academically based, band together with shared goals. In our case, the Collaborative was able to rapidly gather local data about COVID-19 in children and influence school reopening decision using letters, media, and relationships built with local leaders.

Current efforts of the Collaborative are focused on the continuing challenges for primary care providers presented by COVID-19, specifically the increased demand for mental health care associated with the pandemic. This work presents an opportunity to advocate for a coordinated system of mental health care in our community to optimize outcomes and use of resources. As children’s hospitals continue to sound the alarm of the behavioral health crisis and difficulties in caring for these children, efforts among primary care clinicians to fill the increasing gap in mental health care services for children is ever more critical.

Although clinicians who care for children from disproportionately impacted racial groups participate in the listserv, few of these clinicians participated in the data collection project, resulting in underrepresentation of these children in our sample. A goal of the Collaborative is to engage more primary care clinicians who provide care to populations of racially diverse children and children living in poverty to extend the reach of this work and expand opportunities for local advocacy.

The unique challenges faced during the pandemic drove the development of our Collaborative, which will certainly continue to shape primary pediatric care in our community moving forward. It is a clear demonstration that collaboration among academic and community pediatricians is essential to ensure the best care for our children and families. Our model has great potential for effectively addressing future new or rapidly evolving pediatric health crises here and in other communities.

St Louis Regional Pediatric COVID-19 Learning Collaborative: Ardis Allison, DO, Patricia Amato, MD, Courtney Andrus, PA-C, RD, Dana Ankney, MD, Betsy Atkinson, MD, Robert Atteberry, MD, Sarah Aubuchon, MD, Cody Elizabeth Basciano, FNP-BC, Jean Birmingham, MD, Trina Blythe, MD, Kristen Bruno, MD, Tara M. Budetti, MD, Archna Calfee, MD, Erin Casey, MD, John Cole, MD, PhD, FAAP, Lora Collier, MD, Tracy Cope, RN, MSN, CPNP, Alison Cosa, RN, FNP-C, Kristine Costello, FNP, Teresa Dillard, CPNP, Alla Dorfman, MD, Julie Dorfman, MD, Jennifer Dunn, MD, Adam Eaton, MD, Jay Epstein, MD, Diane Eschmann-Morie, MD, Rose Eslinger, PNP, Kora Felsch, MD, Isabel Fernandez-Holtzman, MD, Maria Ganninger, MD, Caryn Garriga, MD, Elizabeth Hammer, MD, Suzanne Hanson, MD, David Hartenbach, MD, Amy Hauch, MSN, RN, CPNP-PC, Mary Jo Hernandez-Zipfel, MD, Jane Hicks, CPNP, Laura Hill, MD, Laura Holzum, MD, Anna Huger, MD, Marti Ianiri, CPNP, Virginia James, RN, MSN, CPNP, Angela Jones, MD, Pam Kane, MD, Karla Keaney, MD, Stefanee Keth, MSN, RN, CPNP-PC, Joel S. Koenig, MD, Katherine Komendowski, MD, Valerie Kover, MD, Katy Kreusser, MD, Abby Kushnir, MD, Liling Lai, MD, Kenneth Levy, MD, Stephanie Lorts, MD, Christine Machicao, CFNP, John Madden, MD, PhD, Julia Mayer, MD, Jina McAtee, MD, Maggie McCormick, MD, Andrea McCulloch, RN, CPNP, Thomas C. McKinney, MD, Kristen Mennemeier, MD, Shilpa Menolascino, MD, Mary Meyer, MD, Jenny Miele, MD, Maya Moody, DO, Andrea Mouldon, RN, PNP, Steven Mueth, MD, Kevin Murphy, MD, Alison Nash, MD, Gina Nelson, PNP, Karen Norton, MD, Sarah O’Grady, MD, Jerome O’Neil, MD, Andrea Orr, MD, Alison Oswald, MD, Jennifer Panasci, MD, Rinkal Patel, MD, Lori Payne, CPNP, Danny Plax, MD, S. Bo Plurad, DO, Cassandra Pruitt, MD, Peter Putnam, MD, Jenna Michaels Putzel, MD, MPH, Jamil Rana, MD, Dawn Roemer, CPNP, Sandeep Rohatgi, MD; Christine Ruby-Ziegler, MD, Lisa Ryan, MD, PhD, Elizabeth Satterly, MD, Margaret Schmandt, MD, Jacquelyn C. Schnidman, MD, Alicia Schumacher, MD, Colleen Seematter, MD, Rachel Shakofsky, MD, Kathleen Shaughnessy, CPNP, Paul Simons, MD, Alan Skoultchi, MD, Carolyn Smith, MD, Joshua Smith, MD, David Sonderman, MD, Robert Spewak, MD, Craig Spiegel, MD, Kristin Stahl, MD, Lacey Stevenson, PNP, Marissa Stock, MD, Kristen Terrill, MD, Cassandra Wallace, PNP, Karen Whiteside, MD, Kristine Williams, MD, MPH, Latoya Woods, NP, Kathie Wuellner, MD, FAAP, Staci Young, MD, and Daisy Zhou, MD.

COVID-19

coronavirus disease 2019

PBRN

practice-based research network

PCP

pediatric primary care provider

PPE

personal protective equipment

SARS-CoV-2

severe acute respiratory syndrome coronavirus 2