Describing his patient with COVID-19, a physician said, “The mask isn’t her biggest problem; neither is her cough or shortness of breath. Her biggest problem is her nightmares... She sees her friends and family dying. She sees herself intubated in an ICU for the rest of time.” Funds are being devoted to COVID-19 research. However, the research questions and the outcome measures used are being informed by the researchers’ perspectives and rarely, if at all, by patients and caregivers. This pandemic makes it challenging to engage patients and caregivers in research; yet now, perhaps more than ever, there is a pressing need for their input, given how little is known about this virus and its effects. The project team will partner with patient organizations and adapt recommended approaches for patient and stakeholder engagement in research to a pandemic situation. The team will identify a diverse group of patients with underlying conditions who were affected by COVID-19, and invite them with their caregivers to participate in this project as partners to surface their concerns, information needed to make health decisions, and meaningful outcome measures. The goal is to help engage patients and caregivers as partners in COVID-19 research through facilitating incorporation of their perspectives in COVID-19 research and enabling connections between them and other researchers. Project objectives include:
- Use a multipronged person-centered approach to engage a diverse group of patients with underlying conditions who have been affected by the novel coronavirus and their caregivers in a series of conversations to surface their concerns, and the research questions and outcome measures that are important to them
- Provide an online resource where the stories and voices of those patients and caregivers can be directly heard by researchers, and where researchers can reach out to them to partner on research work
- Disseminate lessons learned about engagement in pandemic times, the relevant research questions and outcomes, and the website where people can hear patient and caregiver stories and reach out to them
The team will conduct small-group conversation events with patients and caregivers using video and phone communication options. The team will conduct pre-event technology checks and offer safe alternate locations with wireless access and devices if needed. The team will help partners who are interested in joining future research as team members connect with researchers. Project outputs will include:
- White paper that summarizes patient and caregiver COVID-19 concerns, information needed to make health decisions, and meaningful measures to assess in research
- A lessons-learned document on engagement during a pandemic that will be shared online with project findings and via webinar
- Engagement resource with audiotaped stories from patients/caregivers to facilitate connections between COVID-19 researchers and patients and family partners.
Project organizational partners include the Institute for Patient- and Family-Centered Care and the COPD Foundation.