Parkinson’s disease (PD) is a chronic debilitating condition with significant patient morbidity. Over 40 percent of Medicare beneficiaries with PD do not receive care from a neurologist within four years of diagnosis, resulting in increased risk for morbidity, loss of independence, and premature death compared to those who see a neurologist. Telehealth, the use of telecommunication technologies to provide health care, has the potential to increase access to timely, patient-centered care for individuals with PD. However, evidence of the benefits of telehealth is lacking.
With support from PCORI, the project team recently completed the first national randomized controlled trial of telehealth for Parkinson’s disease (Connect.Parkinson). In this 12-month study, approximately 200 individuals were randomized to receive usual care in their community or usual care augmented by four virtual visits with a PD specialist who directly connected to patients in their homes. The study demonstrated that “virtual visits” are: (1) in great demand (nearly 1,000 individuals wanted to participate in the study); (2) feasible (91 percent of 388 virtual visits were completed as scheduled); (3) valuable to patients (per virtual visit, patients saved an average of nearly three hours of time and over 100 miles of travel); (4) satisfactory to patients (97 percent of participants were satisfied or very satisfied with almost every aspect of the virtual visits); and (5) preferred by patients (patients generally preferred virtual visits with a remote specialist over their usual in-person care with their local PD provider).
This dissemination and implementation project will improve care for patients with PD through the: (i) use of “virtual visits” as explored in the project team’s current PCORI-funded study and (ii) provision of multi-disciplinary care. This project is of value to patients, caregivers, clinicians, representatives of advocacy organizations, payers, and policy makers. The researchers will engage members of these communities to improve the design of the care model and ensure that patients and clinicians are able to use these tools. The project will incorporate the refined and expanded virtual care model into a funded statewide care program, Parkinson Disease Care New York, which will provide care to at least 500 New Yorkers with Parkinson’s disease over three years. In addition, the project will comprehensively evaluate the effectiveness of the virtual care model and the success of the implementation approaches.
Original PCORI-funded Project
Note: The results of the original project have been submitted and the draft final research report is currently going through the Peer Review process.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.