Women with Parkinson’s disease (PD) have not been and are not adequately represented in Parkinson’s research, which is a critical reason the Parkinson’s Foundation created the Women and PD Initiative. The Foundation is leading the first national effort to address long-standing gender disparities in Parkinson’s research and care through the Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK).
This project received $250,000 in award funding from the Patient-Centered Outcomes Research Institute and developed new patient-centered recommendations to improve the health of women living with Parkinson’s.
Why Women and PD TALK?
Historically, Parkinson’s care has been based on research that has focused too narrowly on men or neglected to consider relevant gender differences. For example, treatment protocols have not taken into consideration the fact that women can react differently to medications or are less likely to see specialists.
How Did It Work?
Over the past two years, the Parkinson’s Foundation hosted 10 regional forms and one national forum where advocates for women with Parkinson’s and healthcare professionals gathered to recommend priorities in research and care. Through this collaboration, the Parkinson’s Foundation developed comprehensive, patient-centered recommendations, Women and Parkinson’s: Closing the Gender Gap in Research and Care, A patient-centered agenda for change, that provide an opportunity to change the ways in which Parkinson’s is studied and treated in women.
“The Parkinson’s Foundation is engaging key stakeholders in Women and PD TALK to ensure that our recommendations for women’s health are not only developed, but also implemented,” said Veronica Todaro, co-lead of Women and PD TALK, Parkinson’s Foundation Executive Vice President and Chief Operating Officer. “We want to understand how to improve women’s lives and then make it happen."
The Women and PD TALK forums identified several unmet needs for women with PD. Societal norms, health behaviors, place of residence, support structures and other factors interact to influence the experiences of women with Parkinson’s.
Women and Parkinson’s: Closing the Gender Gap in Research and Care, A patient-centered agenda for change addresses the most pressing issues that have the greatest potential impact on the women and PD community, while identifying the multiple factors that influence women’s health outcomes. Addressing these needs can improve the lives of women living with Parkinson’s, while enabling healthcare professionals to follow new guidelines that will lead to more personalized treatments.
The agenda focuses on three goals:
- To increase and improve research to better understand PD in women
- To improve health care access and delivery for women with PD
- To empower women with PD and their care teams to advocate for optimal Parkinson’s care focused on their unique experiences.
The agenda highlights nine patient-centered research and care priorities, including:
- Ensuring that research is relevant to women and understanding why women are at reduced risk for developing Parkinson’s.
- Using shared decision-making tools to promote effective communication between medical professionals and women with Parkinson’s in creating treatment goals.
- Targeting resources to caregivers to help manage their own mental health and well-being.
- Providing women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.