Patient Perspectives and the Importance of Advocacy and Support in Parkinson Disease: Lori DePorter
At ATMRD 2023, Lori DePorter, global ambassador for the PMD alliance, talked from the patient experience about the need for improved communication between care teams and support groups in Parkinson disease. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
"I would say encourage your patients to be advocates for themselves, even if it may require somebody to talk to them a little bit longer. Also, encourage them to utilize the support groups that are in the community because they can be a benefit in terms of getting information. I think any patient advisory person that they can provide would be great, like a nurse that's dedicated to neurology patients."
Providing high quality of care for patients with Parkinson disease (PD), a disabling neurodegenerative disorder, not only depends on the perspective of the clinician but also from the experience of the patient. Recently, the Parkinson & Movement Disorder Alliance (PMD) performed a comprehensive patient survey that collected the perspectives of PD care from an array of patients. The survey aimed to shed light on certain areas in the field of care from patient’s voices thus finding out what might require more attention to improve the patient experience.
Lori DePorter, a patient who was diagnosed with young-onset PD at the age of 45 years, attended the 2nd Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 8 to 11, 2023, in Washington, DC. DePorter, a global ambassador for the organization, was asked to participate in the patient survey. The survey revealed key insights from patients that highlighted recommendations and emphasized the importance of having effective communication and support within PD care.
At the meeting, DePorter sat down in an interview with NeurologyLive® to discuss the recent patient survey in terms of the responses from other participants. She talked about some of the key concerns expressed by patients regarding their care for PD, as well as explained how communication gaps between care teams can be addressed to improve the overall patient experience. In addition, she shared her thoughts on the benefits of community organizations, such as support groups, in supporting patients with PD and enhancing their care.
