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Background
The devastating impact of the COVID-19 pandemic in the U.S. continues to grow as additional variants yield new waves of infection. An estimated 1 in 5 people who have had COVID-19 will experience “long COVID” – persistent symptoms of acute SARS-CoV-2 infection lasting beyond three weeks (post-acute) or three months (chronic) after acute infection (National Center for Household Statistics, 2023). Among those dealing with long COVID, 79% have limitations to their day-to-day activities and 27% describe significant limitations (Burns, 2023). Primary care clinicians report feeling helpless and ineffective in their care of people with long COVID (Ollove, 2021).
Primary care’s focus on long-term care relationships and community input position it well to bridge documented gaps between patients with long COVID and healthcare systems (Phillips et al., 2021) and to build trust by confronting structural inequities exposed and exacerbated by the COVID-19 pandemic (Berger et al., 2021; IQVIA, 2021).
This action-oriented toolkit includes a catalyst film which summarizes findings from research about patients’ and community members’ experiences with long COVID and resources for patients with long COVID and their clinicians. Together these materials, along with a facilitation guide and evaluation plan, compose an educational intervention for primary care that is intended to spark conversation and catalyze change in health care.
Who should use this toolkit?
This toolkit is intended as an educational intervention for primary care clinicians and staff working with people with long COVID. The intervention is designed to increase the capacity and confidence of people caring for patients with long COVID in primary care clinics.
What does the toolkit contain?
This toolkit contains materials for the educational intervention:
- Catalyst film: Catalyst films about Health Experiences are short films that summarize key findings from interviews with people discussing their health experiences and experiences receiving health care. This catalyst film is about peoples’ experiences of long COVID that includes practical guidance for primary care clinicians.
- Facilitation guide: The toolkit contains facilitation materials including a draft agenda for the intervention session(s) using the catalyst film and tip sheets.
- Companion materials: The toolkit also includes one-page sheets for patients with long COVID and clinicians with resources and tips for addressing this chronic health crisis. We offer samples and blank templates to customize for your location.
- Evaluation: This toolkit includes a pre-post evaluation plan which will help you survey primary care clinicians exposed to the intervention to better understand its impact.
How should these tools be used?
The materials in this toolkit can be used to:
- Inform primary care clinicians about peoples’ experiences of long COVID
- Spark conversations about amplifying or changing certain clinical practices
- Offer clinicians resources for assisting patients with long COVID
A copy of the survey instruments and information on adapting them are available in the PDF file. In addition, we provide a separate Microsoft Word/Excel file that you can download on the HIPxChange website to allow you to adapt the instruments for use in your organization.
Development of this toolkit
The Catalyst Films about Health Experiences: Long COVID in Primary Care toolkit was developed by researchers and clinicians (Principal Investigator: Rachel Grob) at the University of Wisconsin-Madison School of Medicine & Public Health – Department of Family Medicine and Community Health. We also want to acknowledge the work by Claire Maske to make this toolkit possible.
In 25 interviews with people suffering with long COVID we conducted in Wisconsin from 2020-2022, we heard about the multifactorial physical, mental, economic, and social impacts of this emerging condition. We also learned about interviewees’ actionable ideas for addressing long COVID in primary care clinics and in their communities. In 2023, we also interviewed 15 mental health providers, community health workers, lawyers, physicians and nurses, program managers, and home visitors to learn about existing resources and creative ideas for how to care for people with long COVID.
This project was supported by a Clinical and Community Outcomes Grant from the Institute for Clinical and Translational Research. Additional support was provided by the University of Wisconsin School of Medicine and Public Health’s Health Innovation Program (HIP) and the Community-Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR), grant 9 U54 TR000021 from the National Center for Advancing Translational Sciences (previously grant 1 UL1 RR025011 from the National Center for Research Resources). Source material for the film was generated with thanks to a Department of Family Medicine and Community Health Small Grant. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or other funders.
Please send questions, comments and suggestions to qherlab@fammed.wisc.edu.
About the Authors
Jane Alice Evered, Ph.D. RN (she/her) is an Investigator with the Qualitative Health Experiences Research Lab (QHER) at the University of Wisconsin-Madison Department of Family Medicine & Community Health. She is a researcher on various Health Experiences Research Network (HERN) projects including several catalyst film projects.
Sarah Davis, JD, MPA (she/her) is Director of the Center for Patient Partnerships and a Clinical Professor in the University of Wisconsin Law School. She collaborates on research, program, and policy efforts to enhance the responsiveness of health and legal systems to consumers’ experiences and to health harming social and legal needs, including LIFT Wisconsin.
Briana Patrick, MS (she/her) was a Research Specialist with the Qualitative Health Experiences Research Lab (QHER) at the University of Wisconsin-Madison Department of Family Medicine & Community Health. She collaborated and coordinated various Health Experiences Research Network (HERN) projects with dedicated foci to diversity, equity, inclusion, and access for all.
Dr. Sarina Schrager is a family physician who has been in practice since 1996. She is a Professor in the University of Wisconsin-Madison Department of Family Medicine & Community Health and is the Medical Director of the Wisconsin Research & Education Network (WREN) which is a primary care practice based research network. She provided consultation for this project and a primary care perspective.
As the Associate Director of the Wisconsin Research & Education Network (WREN), Mary Henningfield, PhD works on a broad range of practice-based primary care research projects, supporting clinicians throughout Wisconsin to generate and implement research projects relevant to primary care. Dr. Henningfield’s interests include shared-decision making in clinical practice, health literacy, development of patient and physician education materials, pain management, and health care disparities.
Alice Yuroff, PhD is the lead research coordinator with the Wisconsin Research and Education Network (WREN), where she is responsible for implementing a wide range of primary care research projects in WREN’s portfolio. Through her work in healthcare advocacy, Alice developed expertise in patient and stakeholder engagement in the research process.
Linda S. Park, PhD, MSSW (she/her) is a Research Scientist with the Implementation Science & Engineering Lab at the University of Wisconsin-Madison Department of Family Medicine & Community Health. As a NIH Minority Health and Health Disparities Scholar and a member of the Edward A. Bouchet Honor Society, she conducts interdisciplinary research with a focus on community outreach and diversity, equity, and inclusion in health research.
Rachel Grob, MA, PhD (she/her) is Director of the Qualitative and Health Experiences Research Lab (Q-HER) at the University of Wisconsin-Madison Department of Family Medicine & Community Health. Her work focuses on improving health by listening to people’s experiences with health and health care, synthesizing their narratives, and then using this powerful learning as a source for making concrete changes that benefit consumers, families, clinicians and communities.
