Background: Electronic methods of engagement have never been more essential than during the current pandemic. Research teams have switched operations to be virtual wherever possible. Key community and patient stakeholders (e.g., members of the project team’s preexisting partnering groups including the Community Research Advisory Council and Patient and Family Advisory Council) are at risk of being left behind as an unfortunate consequence of this switch to digital operations. An estimated 40 percent of households in Baltimore do not have internet service, and one-third do not have either a desktop or laptop computer. This lack of access is reflected in the team’s community partners.
Proposed Solution to the Problem: The team proposes to build capacity for Baltimore community and patient stakeholders to engage virtually by co-designing and implementing a self-paced course, Addressing the Digital Divide to improve Patient-Centered Outcomes Research (ADD2PCOR), to provide participants with basic technological knowledge and equipment. By supplying those who previously did not have convenient internet access with a basic tablet, data plan, and a self-paced course on how to access affordable (or free) wireless internet, video conferencing software, email, and other key sites, the team may cover ground in closing the digital divide for research engagement. Additionally, the team will host a virtual summit to brainstorm needed research to address the digital divide and the sustainability of the course.
Objectives: To address the digital divide affecting community and patient stakeholders, develop resources, and co-create research in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) in times of social distancing, the team proposes the following objectives:
- Co-create a self-paced course on digital technology used by research teams to communicate virtually. The team will seek input from community and patient groups to understand difficulties members face when engaging virtually.
- Deliver the course to 10 existing community and patient stakeholders who report not having regular access to internet or a tool beyond a basic cellphone to participate in the course. Each will receive a tablet equipped with a data plan.
- Conduct virtual summit with key stakeholders. This includes community members and patients, researchers, internet service providers, and clinicians. The goal of the summit is to understand what PCOR and CER is needed to address the digital divide. The team will write a white paper on the research ideas co-developed in the summit for dissemination.
Activities: Course development will follow the Tyler model of planning, designing, implementing, and evaluating with stakeholders engaged in the conception of each aspect. The first part of the course will ensure the individual is comfortable accessing the internet and email. The second part of the course will be delivered virtually and ensure the individual is comfortable using software commonly used by research teams. The summit plan will be designed with stakeholder advisory board and course participants’ input to meet the goal of understanding what PCOR and CER is needed to address this divide.
Outcomes and Outputs (projected):
- A self-paced course on the basics of digital technology skills necessary to engage with a research team. This course can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology.
- A white paper on PCOR and CER needed to address the digital divide informed by community and patient stakeholders, clinical researchers, and frontline clinicians.
Patient and Stakeholder Engagement Plan: Four partnering groups with community and patient stakeholders (including the Community Research Advisory Council and Patient and Family Advisory Council) have already played key roles in forming ADD2PCOR and will continue to play a role. Each group is committed to holding a listening session to give feedback on the course and summit, and is represented either on team leadership or through a stakeholder advisory board member.