Background: The problem to be addressed by this project is that at least 2 million homebound older adults represent a virtually invisible population with no ability to contribute to a patient- and caregiver-centered research agenda.
Proposed Solution: The project team proposes to implement approaches to engage stakeholders—including homebound people cared for in home-based medical care practices and their caregivers—with the goal of informing and working with researchers across the United States on issues of importance to them.
Objectives: The objectives of the project are to: develop the best approaches to enlist, train, and engage stakeholders in research by interviewing them and getting their advice; form stakeholder advisory groups and train stakeholders on issues related to research; learn from stakeholders the 10 most important issues or questions that researchers should address to meet their needs and improve their lives; and disseminate the results of this work to researchers and other audiences around the country through the project team’s extensive networks.
Activities: The project team will interview stakeholders to develop the best approaches to engage with them. The team will then provide them with several training sessions on how to think about patient-centered research. In several additional sessions, the stakeholders and the project team will collectively develop and rank a research agenda consisting of a list of at least 10 important questions that should be addressed by researchers in the field. Finally, the team will disseminate this research agenda to researchers in the field via national organizations in which the project leaders hold key leadership roles and related organizations.
Outcomes and Outputs: The main outputs of this work will be: a set of approaches to engage relevant stakeholders in creating research questions; the development of a research agenda related to the care of people who are homebound and the type of medical care they receive in the home; assembly of research approaches that are acceptable to stakeholders; and dissemination of the patient- and caregiver-developed research agenda. This project creates a foundation to build a national network of stakeholder advisory groups to collaborate with researchers in this field.
Patient and Stakeholder Engagement Plan: The project’s stakeholders are homebound people receiving home-based medical care and their caregivers. The project team will engage stakeholders meaningfully throughout the project. The researchers will accomplish this by obtaining input directly from them on the best approaches for developing research questions that are meaningful and important to them. Stakeholders will be identified and engaged in the project in an appropriate and highly personalized manner. The team has specifically designed this project such that the roles of key stakeholders are paramount in formulating the project’s questions and design, and in the project’s conduct and dissemination of results. The project team has developed meaningful roles for patients and stakeholders in dissemination.
Project Collaborators: Project collaborators include stakeholders, physician researchers and research assistants from Johns Hopkins University and the University of California, San Francisco, and a consultant from the Bureau of Sages program in Chicago, Illinois.