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Advisory Council Gives Voice to Patient, Family at Movement Disorders Center

July 30, 2021

Valdemar Ramos was just the sort of patient Dr. Sulada Kanchana was looking for when she started organizing the Chase Family Movement Disorders Center Patient and Family Advisory Council last year. Yes, Ramos, of Enfield, has Parkinson’s disease, but, more important, he has a desire to improve the experience of other patients and family members who come to the various Chase centers across the state. “We wanted to hear the patient voice to be able to respond to their different concerns, and to hear what people think,” said Dr. Kanchana, director of program expansion and outreach for the Movement Disorders Center. She recruited about 20 people to participate in the center’s first Advisory Council, which started meeting in April. The goal is to improve care. “With Parkinson’s, there’s a lot of information that needs to be organized, and this is helping patients into the organization part so they can have input on how things should run,” Ramos said. “That will make it easier for patients and their caregivers to find the help they need.” The Advisory Council, which meets monthly, infuses activity at Movement Disorders Center with the patient’s point of view, which is very different from the providers’. “Clinicians know some things but it’s so important to hear from the patient and family’s point of view. We are fortunate we have a group with such rich experience,” Dr. Kanchana said, referring to the professional experience Advisory Council members bring to the committee. The work, Ramos added, encompasses various aspects of the entire patient experience and also how to promote the work being done at Movement Disorders Center. Do patients, for example, find information on healthcare facilities through print advertising or through social media? Other questions might touch on how best to contact the office – via phone or email. “We give feedback on different centers we’ve visited and times things might have worked better,” he said. “It’s important that they hear the voice of the customer.” Any patient or family member interested in joining the Advisory Council should speak with their provider.