New national strategy urges patient-centered Parkinson’s care in US
Parkinson’s Foundation names 4 piorities with 'practical, actionable steps'
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A new national strategy from the Parkinson's Foundation aims to improve patient-centered care in the US.
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Key priorities include expanding clinician expertise, developing integrated care models, defining clinical data, and using new technologies.
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This strategy will help guide federal policy for the National Plan to End Parkinson's Act.
The Parkinson’s Foundation has released its new national strategy dedicated to improving care for people with Parkinson’s disease by focusing on practical, patient-centered solutions that the nonprofit says will address the real challenges now facing the U.S. community.
The new strategy, dubbed Parkinson’s Care and Innovation: A Patient-Centered Agenda for Change, reflects the outcome of the National Roundtable on Parkinson’s Care and Innovation, held last fall, which brought together healthcare providers, policy leaders, advocacy organizations, caregivers, and patients.
It outlines four major care priorities, centered on delivering high-quality, integrated, and coordinated care for people with the progressive disease.
“The four care priorities … reflect the nuances of living with [Parkinson’s disease],“ Sneha Mantri, MD, the foundation’s chief medical officer, said in a press release from the organization that outlines its new blueprint for change.
“[These] priorities require practical, actionable steps to strengthen Parkinson’s care, improve coordination among providers, and ensure that people with Parkinson’s receive the support they need to live well,” Mantri said.
According to the foundation, its strategy addresses what it says is a current lack of specialized healthcare providers, as well as a dearth of coordinated technology for improving Parkinson’s care. The nonprofit also wants more care coordination overall, and is seeking to develop a clinical data set that can be used nationwide.
Strategy calls for new ‘sustainable, integrated’ care model
The first defined priority, “Build Community Clinician Capability,” aims to address workforce shortages in specialized care and deliver high-quality Parkinson’s care. The goal is to expand movement disorder expertise, training, and education based on the so-called hub-and-spoke model. It seeks to have experienced specialists at medical centers (hubs) train providers at community clinics (spoke sites).
Short-term goals — spanning 1-3 years — include defining the structure of the hub-and-spoke models and creating content and resources to support education and training. Another key goal is to advance a policy agenda that addresses provider reimbursement, medical licensure flexibility, and telehealth coverage.
Over the long term, slated for four to seven years out, the established model would be expanded nationally across brain health overall, according to the foundation.
The second priority, “Develop a Sustainable, Integrated Care Model,” aims to support team-based care by improving care coordination among providers, focusing on patient outcomes, and improving access to essential services for people with Parkinson’s and their caregivers.
In the short term, the goal here is to evaluate evidence-based, best-practice care models and to design and validate an integrated care model based on available evidence. Once established, the care model can be expanded across care settings and regions.
The third priority is “Define a Minimum Clinical Dataset.” As that subject line indicates, the goal is to establish a core set of clinical information that can be shared across health settings to improve care planning and continuity of care. To that end, efforts should be focused on defining and testing selected data and developing solutions for data collection, as well as promoting data set implementation and maintenance.
The agenda also sets forth the fourth priority: “Prioritize Patient-Centered Technologies.” Its goal is to encourage the adoption of scalable tools that are useful for patients and caregivers, such as digital tracking, telehealth, and other supportive technologies.
This agenda makes clear that for progress to occur in improving Parkinson’s care, we need corresponding policy action, including improved provider reimbursement policies, telehealth coverage, licensure flexibility across state lines, and tighter … coordination to prevent coverage delays.
Actions to support this solution include defining an innovative pipeline and principles for advancing technology, incorporating patients’ perspectives in technology development, and exploring telehealth and payment parity. In the long run, the goal is to develop incentives to support the framework’s implementation.
“This agenda makes clear that for progress to occur in improving Parkinson’s care, we need corresponding policy action, including improved provider reimbursement policies, telehealth coverage, licensure flexibility across state lines, and tighter FDA-[Centers for Medicare & Medicaid Services] coordination to prevent coverage delays,” said Andi Lipstein Fristedt, executive vice president, chief strategy, and policy officer at the Parkinson’s Foundation.
These changes, Fristedt added, “will require coordinated action from federal and state policy leaders to ensure timely, high-quality, and patient-centered care.”
Patient-centered strategy ties in with US’s End Parkinson’s Act
The now defined priorities are critical, according to the foundation, as the federal government is preparing to implement the National Plan to End Parkinson’s Act. As part of that, it will convene the Advisory Council on Parkinson’s Research, Care and Services.
The foundation recommends that once established, the advisory council uses this agenda to develop the first federal plan to end Parkinson’s.
