Background: Coronavirus disease 2019 (COVID-19) hospitalizations and the demand for testing forced public health officials to accelerate the development of recommendations to mitigate the disease’s impact. With a frequently changing and incredibly unstable body of evidence regarding prevention, treatment, and general best practices, the need for more engagement is apparent. The design, development, and dissemination of patient-centered outcomes research (PCOR) on COVID-19 and other infectious diseases (ID) will be critical to address the current crisis and prepare for future pandemics. Government restrictions aimed at reducing travel and quarantining individuals impose a major barrier to in-person, continuous engagement of patients and stakeholders.
Proposed Solution to the Problem: The project team’s proposed solution, a virtual conference (#IDatHome), will address ID-specific comparative effectiveness research (CER)/PCOR design and facilitate the exchange of evidence-based methods of engagement among ID providers, researchers, and patient advocates. The team aims to build from a foundational collaboration between the PATIENTS program and the Institute of Human Virology (IHV) at the University of Maryland, Baltimore (UMB), previously formed thanks to a 2018 PCORI Pipeline to Proposal award.
Objectives: The objectives for the conference are: to engage a variety of stakeholders remotely by leveraging technology; to explore COVID-19-specific challenges patients are facing to identify and prioritize future CER/PCOR for infectious diseases.
Activities: The team’s activities include the formation of a patient-centered multi-stakeholder conference planning committee (CPC) to help guide project planning and decision making. Prior to the conference, the team will launch a multi-platform online social media campaign (e.g., Twitter, Facebook, Instagram) and a website (www.idathome.org) to expand the reach and engage a broad audience. The inaugural #IDatHome event will be a half-day (four-hour) live/synchronous session conducted on the Zoom platform that can host up to 3,000 participants. During the week following the live #IDatHome event, all attendees will receive a post-meeting survey to capture additional information and feedback. All meeting sessions will be recorded and posted to YouTube and the website.
Projected Outcomes and Outputs: In order to evaluate the success of #IDatHome, the team will use an adapted logic model demonstrating how the team will deploy a variety of resource inputs (e.g., faculty and staff time, outreach, technology, training, and preparation for the live event) and activities (e.g., CPC meetings, strategic social media posts, and the inaugural event) over the course of the 12-month project term. These inputs and activities will yield immediate measurable outputs (e.g., number of individuals engaged by social media platform, number of attendees for the #IDatHome live event, surveys of attendees, and manuscript/blog submissions describing the planning process and event) that will be directly evaluated qualitatively and quantitatively.
Patient and Stakeholder Engagement Plan: The team will use a framework of continuous patient engagement through its CPC for project decision making. The team’s targeted (network contacts) and broad (social media) engagement strategies will enable #IDatHome to reach a substantial audience.
Project Collaborators: Eleanor Wilson, MD, MHS, University of Maryland Institute of Human Virology, and the PATIENTS program.