The Michael J. Fox Foundation (MJFF) and AbbViehave launched Partners in Parkinson's, a new strategic health initiative offering comprehensive support to help people with Parkinson's disease (PD) optimize their care at every stage of the disease.
Partners in Parkinson's provides patients and caregivers with virtual and face-to-face opportunities to connect with knowledge and support, including an educational web site (www.partnersinparkinsons.org) featuring the first online tool enabling patients to locate a movement disorder specialist. The tool was developed in collaboration with the International Parkinson and Movement Disorder Society.
The web site also connects patients and caregivers with AbbVie Parkinson's Disease Advocates, who are available to provide one-on-one support anywhere in the U.S. It also offers comprehensive information about PD, including a downloadable PD guide.
Designed to help Parkinson's families "discover the benefits of team," Partners in Parkinson's is focused in part on the value of specialist care to manage the progressive symptoms and stages of PD—something too few patients make part of their care regimen. While estimates vary, conventional knowledge holds that the percentage of PD patients who ever seek specialist care ranges from 40% to 60%. According to a survey conducted online by Harris Poll on behalf of the Michael J. Fox Foundation and AbbVie in February/March, among more than 500 PD patients diagnosed with PD, as few as 28% of PD patients currently are seeing a movement disorder specialist (a neurologist with specific training in treating PD). Even more tellingly, more than half of patients were unable to identify the correct definition of a movement disorder specialist when given a multiple choice list of definitions.
The lack of awareness of specialty care speaks to a large-scale information gap—including a significant lack of knowledge about the progression of PD. The MJFF and AbbVie survey revealed 51% of patients feel "informed or very informed" about what to look for in monitoring PD as it progresses, which may hold implications for their ability to appropriately evolve their treatment plans and manage their disease at all stages.
"Partners in Parkinson's aims to empower patients with the knowledge they need to proactively address care needs from diagnosis through advanced disease," said Maureen Conley, general manager, neuroscience, AbbVie. "The goal of this initiative is to help Parkinson's patients and families develop a plan of care that adapts as their symptomatic and lifestyle needs change over time."
The benefits of taking control of one's care may go beyond the individual to impact the PD community as a whole—because proactive engagement in care often leads to greater engagement in PD-related activities across the board, less isolation and, in many cases, a decision to participate in clinical trials that urgently need volunteers. For example, the 2014 survey revealed that 81% of patients whose main doctor was a movement disorder specialist said they would be "likely or very likely" to participate in a clinical research study if one were being conducted in their area, compared with 49% of patients whose main doctor was a general neurologist and 33% of patients whose main doctor was a primary care physician.