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[MUSIC PLAYING] Voices: The beauty of it is that parents really keep the process focused.
Voices: We really do need to truly place the patient in the center.
Voices: Without them, we couldn't do this work effectively.
Voices: I'm a family partner because it's a way for me to help make things better for other families.
Tom Dahlborg, VP NICHQ: A parent partner is someone we work with, a person who has experienced the healthcare system that's
either had an amazing experience or maybe has identified some real barriers to optimal healing or both.
It's essential to have parent partners working with us if we truly want to make the change that we're all seeking.
Janet DesGeorges, Parent Chair NICHQ: I think often organizations and agencies give lip service
to the idea that parents are important. And I think NICHQ has been great at actually implementing and putting parents in positions of decision-making.
Maria Mignone, RN, Family Care Coordinator at Pediatric Associates of Greater Salem, Mass: Having the parents there while we're brainstorming
they actually will bring up different scenarios that they've encountered. And that will certainly help us with changing the way we think about something.
We've tried parent surveys in our office and basically haven't received much feedback. There wasn't anything that came of those surveys
that had such benefit as to them being present in the room while we're at a meeting and speaking with us directly about what we're focused on.
Jacqueline Johnson, Med, Chief Operating Officer at Caring Health Center Massachusetts: The insight and knowledge
that they bring to the table is beyond what we could have ever imagined.
Kim Reimann, Parent Partner Wyoming: I am learning so much from everybody else that I'm able to go back and share what I've learned with other families or friends.
And it just has been a really wonderful process.
Darcy Severson Parent Partner, North Dakota: I have been able to share stories of other parents, the good and bad. And my team's been real accepting to even the bad,
and being able to take that information and look how they can do things differently.
Neil Sharpe: Project Director, North Dakota office of hearing loss: What the parent perspective has done is it's made everybody not only understand
that they have a professional role to play, but I think that Darcy, just her presence and her interaction, has made us focus on that first.
Dan Coury, MD, Director of the Autism Treatment Network: These are not complaining parents.
They work as full partners with us, sharing in the planning and the development of new strategies for serving these children.
Tom Dahlborg, VP NICHQ: Over the last 10 plus years, we've worked very closely with parent partners.
We've developed an expertise in this area, so that when I'm out and hearing from other organizations, funders, and they're saying what does NICHQ do best,
we're known for our work with parent partners. We're known for being able to
engage these people who have been through the system to help us improve the system. [MUSIC PLAYING]
Subtitles by the Amara.org community