NPF’s groundbreaking Quality Improvement Initiative (QII) research database is the central component of our evidence-based approach to improving care. The complexity of Parkinson’s disease makes diagnosis, treatment and care difficult to manage and care models hard to define. While Parkinson’s is a highly individual disease, still, there is significant variability in patient management, no consistent understanding of quality care among physicians, patients and their caregivers, and a need for evidence-based, clinical guidance.
In response to these challenges, NPF launched QII to determine what treatments produce the best outcomes for Parkinson’s patients over time, based on successful models used for cardiovascular disease and cystic fibrosis. The core of this effort is the creation of a standardized, multi-center database of a minimum of 10,000 patients, rooted in clinical settings.
This project systematically measures and tracks care over time for every patient diagnosed with Parkinson’s disease. The goal is to explore the variation in current clinical practice in order to determine the “recipes” for best outcomes in Parkinson’s. Our ultimate aim is to create and share models of excellent care, so that every Parkinson’s patient receives the most effective treatment options available, whether they are seen by a specialist at an NPF Center of Excellence, a general neurologist or their primary care physician.
NPF’s QII aims to:
- Identify positive health outcomes associated with various treatment approaches;
- Support research identifying the most effective treatments;
- Support exploratory data analyses for the development of novel hypotheses for prospective clinical research; and
- Allow centers and clinicians to track their performance based on benchmarks set by NPF Centers.
Allied Team Training for Parkinson: Attendance to this year’s training conference has increased by nearly 28%. In 2011, NPF trained 90 health care professionals in “best practices” for Parkinson’s disease. Since inception, NPF’s signature Allied Team Training for Parkinson program has trained nearly 1,400 medical professionals. This four day intensive training includes both classroom and clinical training to promote a comprehensive, multi-disciplinary approach to patient care.
Professional Education Webinars: NPF and the Georgia Statewide Area Health Education Centers (AHEC) Network have collaborated with care experts in the field of Parkinson’s, to produce live webcasts of educational seminars for CME credit. Recent topics include ‘Sexuality and Parkinson’s Disease’ and ‘How to Deliver the Diagnosis with a Dose of Hope.’ Both sessions are taught by health care professionals and experts in Parkinson’s disease, and both are archived online at http://www.parkinson.org/ for future reference. Another webinar, “A Road Map for Nurses” was produced in partnership with PDF in the New York region. Collectively, over 300 professionals registered for these webinars and 6000 nurses have viewed this as well.
Collaborating to Help Newly Diagnosed: NPF, in partnership with APDA, hosted two conferences for families impacted by young-onset Parkinson’s disease. More than 1000 people attended – 453 in person, and 565 via live webcast. These educational events provide practical information to newly diagnosed individuals as well as an opportunity to network with peers from around the country. Currently 249 have registered for in person attendance and 708 via live webcast for the conference being held in Des Moines, Iowa on June 12th. Since its inception this conference has touched 3,848 lives.
Kripalu Yoga Retreat: NPF hosted a 5-day pilot program designed for people in the early stages of Parkinson’s disease. This program featured leading medical and holistic professionals who engaged participants in how best to care for self and family. 60 people attended this retreat last year. It is an inspiring, uplifting way to begin their Parkinson’s journey. This program was so successful that we will once again, this year, hold the retreat in October 2011.
Moving Day: NPF has created the first grassroots signature event for Parkinson’s. Held in conjunction with NPF’s network of chapters, Moving Day is intended to provide the unified community fundraising infrastructure that will both raise awareness and funds on a local level. Moving Day, will launch in October 2011 with three events, and a minimum of 12 more are slated for 2012. NPF has 39 affiliated chapters (local or regional community organizations), made up mostly of volunteers, who are committed to making a difference in the lives of people who are affected by PD.
Chapter Involvement: Chapters enable NPF to be aware of local needs. NPF collaborates with each chapter to develop and deliver appropriate programs and resources. The chapters play an important role in the development of regional networks that promote integrated comprehensive care, education, support and research. In an effort to develop a united voice for all chapters associated with NPF, new technological software is currently being implemented. This software will allow for greater communication between chapters, and provide consistent branding across all Moving Day events. The new technology will also aim to increase the chapter’s fundraising ability by up to 40%.
National Toll-Free Help Line: In 2010, NPF launched the first-ever bilingual, Parkinson’s toll-free Helpline 1-800-4PD-INFO (1-800-473-4636). Specialists, such as social workers and nurses, can answer caller questions in both English and Spanish. The toll-free number is for all who have questions about the disease; especially those people who have limited access to information and local resources. This year alone, NPF has responded to nearly 4,000 inquiries and sent almost over 65,000 print educational materials, including the Rainbow Series booklets, the 10 Early Warning Signs of Parkinson’s, and medical alert cards for patients.
NPF’s web site, Parkinson.org provided valuable information about Parkinson’s disease to patients, families and health care professionals around the world.