Partners in Parkinson’s
The Michael J. Fox Foundation (MJFF) and the AbbVie pharmaceutical company announced on May 27th 2014 the launch of 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.
“No two cases of Parkinson’s disease are alike. Patients and caregivers need high-quality, trustworthy information and resources that can help navigate a Parkinson’s diagnosis and progression,” said Todd Sherer, PhD, chief executive officer of The Michael J. Fox Foundation. “Partners in Parkinson’s provides tools to empower the Parkinson’s community to take an active role in their own care, now and in the future.”
Partners in Parkinson’s provides patients and caregivers with virtual and face-to-face opportunities to connect with knowledge and support. These include an educational website 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 website also connects patients and caregivers with AbbVie Parkinson’s Disease Advocates who are available to provide one-on-one support anywhere in the United States. Finally, the site offers comprehensive information about Parkinson’s, including a downloadable Parkinson’s disease guide.
FEWER THAN HALF OF PD PATIENTS KNOW WHAT A MOVEMENT DISORDER SPECIALIST IS
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 Parkinson’s disease — something too few patients make part of their care regimen. While estimates vary, conventional knowledge holds that the percentage of Parkinson’s patients who ever seek specialist care ranges from 40 to 60 percent. According to a survey conducted online by Harris Poll on behalf of The Michael J. Fox Foundation and AbbVie in February/March 2014 among more than 500 Parkinson’s patients diagnosed with Parkinson’s, as few as 28 percent of Parkinson’s patients are currently seeing a movement disorder specialist (a neurologist with specific training in treating Parkinson’s). 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.
FILLING IN KNOWLEDGE GAPS
The lack of awareness of specialty care speaks to a large-scale information gap — including a significant lack of knowledge about the progression of Parkinson’s disease. The Michael J. Fox Foundation and AbbVie survey revealed that slightly more than half (51%) of patients feel “informed or very informed” about what to look for in monitoring Parkinson’s 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,” says 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 Parkinson’s community as a whole — because proactive engagement in care often leads to greater engagement in Parkinson’s-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 percent of patients whose main doctor that they see for PD treatment is a movement disorder specialist said they would be “likely or very likely” to participate in a clinical research study if there was one being conducted in their area, compared with 49 percent of patients whose main doctor is a general neurologist and 33 percent of patients whose main doctor is a primary care physician.
PARTNERS IN PARKINSON’S EVENTS
Partners in Parkinson’s will visit 11 cities across the United States in 2014 and 15 cities in 2015. Full-day expos designed for Parkinson’s patients and families feature:
*Interactive panels and breakout sessions on understanding Parkinson’s, living well with the disease, and navigating relationships with PD
*The opportunity to witness a typical appointment with a movement disorder specialist firsthand, gaining a sense of the type of information exchange that takes place
*The latest updates on Parkinson’s disease research advances
Events also include locally tailored resource fairs to provide convenient “one-stop shopping” for Parkinson’s organizations, activities and local allies of which patients and caregivers may not be aware. The fairs open early and booths will be staffed throughout the day by:
*Healthcare providers from local movement disorder centers
*Allied care providers, such as physical and speech therapists, who have experience treating people with Parkinson’s
*Representatives from support and advocacy groups as well as physical activity groups tailored to the needs of people with Parkinson’s
*Clinical trial teams recruiting volunteers for local Parkinson’s research studies
WHO IS BEHIND PARTNERS IN PARKINSON’S?
Partners in Parkinson’s has been developed by The Michael J. Fox Foundation and AbbVie. The program reflects both organizations’ commitment to educate and equip patients with resources that help Parkinson’s patients optimize their care at every stage of the disease.
Partners in Parkinson’s also includes the participation of National Presenting Partner The Davis Phinney Foundation who will present a breakout session focused on a holistic approach to living well with Parkinson’s at each event this year, National Participating Partner the Parkinson’s Action Network, who will be present Parkinson’s related policy issues in the resource fair at each event this year, and Participating Partners including allied healthcare providers, local organizations and support groups throughout the country.
Partners in Parkinson’s kicked off May 18th in New York City and visits Cleveland on May 31. For a full list of 2014 cities, to RSVP for an event or to learn more, visit PartnersinParkinsons.org.