Partners in ParkinsonΓÇÖs

The Michael J. Fox Foundation (MJFF) and the AbbVie pharmaceutical company announced on May 27th 2014 the launch of Partners in ParkinsonΓÇÖs, a new strategic health initiative offering comprehensive support to help people with ParkinsonΓÇÖs disease (PD) optimize their care at every stage of the disease.

ΓÇ£No two cases of ParkinsonΓÇÖs disease are alike. Patients and caregivers need high-quality, trustworthy information and resources that can help navigate a ParkinsonΓÇÖs diagnosis and progression,ΓÇ¥ said Todd Sherer, PhD, chief executive officer of The Michael J. Fox Foundation. ΓÇ£Partners in ParkinsonΓÇÖs provides tools to empower the ParkinsonΓÇÖs community to take an active role in their own care, now and in the future.ΓÇ¥

Partners in ParkinsonΓÇÖs 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 ParkinsonΓÇÖs Disease Advocates who are available to provide one-on-one support anywhere in the United States. Finally, the site offers comprehensive information about ParkinsonΓÇÖs, including a downloadable ParkinsonΓÇÖs disease guide.

FEWER THAN HALF OF PD PATIENTS KNOW WHAT A MOVEMENT DISORDER SPECIALIST IS

Designed to help ParkinsonΓÇÖs families ΓÇ£discover the benefits of team,ΓÇ¥ Partners in ParkinsonΓÇÖs is focused in part on the value of specialist care to manage the progressive symptoms and stages of ParkinsonΓÇÖs disease ΓÇö something too few patients make part of their care regimen. While estimates vary, conventional knowledge holds that the percentage of ParkinsonΓÇÖs 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 ParkinsonΓÇÖs patients diagnosed with ParkinsonΓÇÖs, as few as 28 percent of ParkinsonΓÇÖs patients are currently seeing a movement disorder specialist (a neurologist with specific training in treating ParkinsonΓÇÖs). 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 ΓÇö including a significant lack of knowledge about the progression of ParkinsonΓÇÖs disease. The Michael J. Fox Foundation and AbbVie survey revealed that slightly more than half (51%) of patients feel ΓÇ£informed or very informedΓÇ¥ about what to look for in monitoring ParkinsonΓÇÖs as it progresses, which may hold implications for their ability to appropriately evolve their treatment plans and manage their disease at all stages.

ΓÇ£Partners in ParkinsonΓÇÖs aims to empower patients with the knowledge they need to proactively address care needs from diagnosis through advanced disease,ΓÇ¥ says Maureen Conley, general manager, neuroscience, AbbVie. ΓÇ£The goal of this initiative is to help ParkinsonΓÇÖs patients and families develop a plan of care that adapts as their symptomatic and lifestyle needs change over time.ΓÇ¥
The benefits of taking control of oneΓÇÖs care may go beyond the individual to impact the ParkinsonΓÇÖs community as a whole ΓÇö because proactive engagement in care often leads to greater engagement in ParkinsonΓÇÖs-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 ΓÇ£likely or very likelyΓÇ¥ 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.[1]

PARTNERS IN PARKINSON’S EVENTS

Partners in ParkinsonΓÇÖs will visit 11 cities across the United States in 2014 and 15 cities in 2015. Full-day expos designed for ParkinsonΓÇÖs patients and families feature:

*Interactive panels and breakout sessions on understanding ParkinsonΓÇÖs, 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 ParkinsonΓÇÖs disease research advances

Events also include locally tailored resource fairs to provide convenient ΓÇ£one-stop shoppingΓÇ¥ for ParkinsonΓÇÖs 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 ParkinsonΓÇÖs

*Representatives from support and advocacy groups as well as physical activity groups tailored to the needs of people with ParkinsonΓÇÖs

*Clinical trial teams recruiting volunteers for local ParkinsonΓÇÖs research studies

WHO IS BEHIND PARTNERS IN PARKINSON’S?

Partners in ParkinsonΓÇÖs has been developed by The Michael J. Fox Foundation and AbbVie. The program reflects both organizationsΓÇÖ commitment to educate and equip patients with resources that help ParkinsonΓÇÖs patients optimize their care at every stage of the disease.

Partners in ParkinsonΓÇÖs 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 ParkinsonΓÇÖs Action Network, who will be present ParkinsonΓÇÖs 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 ParkinsonΓÇÖs 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.