What problem does the project address and who will it help?
The project addresses the need for patients with Alzheimer’s disease and other dementias and their caregivers to have access to up-to-date health information in a timely manner to help them have meaningful conversations with their providers and make the most informed decisions possible about their care.
Patients with dementia face a variety of problems that require difficult decisions about which treatment options best meet their needs. Patients, caregivers, and providers all believe that making these decisions together is essential to ensure the best healthcare outcomes possible that reflect patient preferences. Patients often do not have the information they need about treatment options and struggle to communicate their wishes to their healthcare providers. Increasingly, patients and caregivers have turned to the internet for information, which is often inaccurate, not scientific, and out-of-date.
What are the objectives of the project?
The project will create a Virtual Health Library (VHL) that uses technology to provide information to patients and their caregivers that is relevant to the patient’s condition at the time of a medical appointment. Patients and caregivers will be able to read this information using their own computers or phones at home, or using tablets provided in the waiting room immediately before an appointment. The objective is to configure a commonly used electronic medical record system to provide the technology support needed for the VHL, and demonstrate how it can be integrated into a large geriatrics practice and add value to patients, caregivers, and providers.
What outcomes are expected?
The project team expects that the VHL will be used by at least 75 percent of the patients and caregivers who have access to it, and that there will be an increase in the knowledge they gain and their sense of empowerment in talking with their providers. The team also expects that providers will report high satisfaction with the quality of conversations they have with patients and caregivers who use the VHL.
How will stakeholders be engaged?
Caregivers of patients with dementia have been involved in this project since day one. They helped identify how important it is for patients and caregivers to have access to timely, trusted information and helped design the VHL concept. Caregivers will continue to help shape the project, evaluate findings, and plan for the dissemination of results alongside other stakeholders as members of the project team and project advisory committee.
Who are the project collaborators?
Project collaborators are the leaders of local, state, and national organizations in the position to influence the adoption of the VHL in other practices and health settings. They include: the department chairs of Family Medicine, Geriatrics, and Neurology at SUNY Upstate, the New York State Program Director for 10 Centers of Excellence for Alzheimer’s disease across the state, and the Director of the National Network of Libraries of Medicine for the Middle Atlantic Region.