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Improving Care Through a Patient and Family Advisory Council

November 18, 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 (CFMDC) Patient and Family Advisory Council (PFAC) 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 CFMDC 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 CFMDC. She recruited about 20 people to participate in the center’s first PFAC, 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 get 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 PFAC, which meets monthly, infuses activity at CFMDC with the patient’s point of view, something that 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,” said Dr. Kanchana, referring to the professional experience PFAC 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 CFMDC. Do patients, for example, find information on healthcare facilities through print advertising or 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 PFAC should speak with their provider.