My name is Cristin. After spending several years navigating resources and coordinating care for my son with complex needs, I felt called to use my experience to improve health, education and community inclusion for all families. I have served in leadership roles that support and advise partnerships between patients (or people, as I like to call them), their families and health care professionals in the design, implementation and evaluation of health care systems.
A Family Leader for Mass Family Voices, a project of the Federation for Children with Special Needs, I served as family faculty for a pediatric medical home learning collaborative facilitated by the National Institute for Children’s Healthcare Quality (NICHQ) and facilitated family participation in the Children’s Healthcare Quality Coalition (CHQC). I also facilitated family and patient involvement for 13 practice improvement teams in patient-centered medical home projects at Cambridge Health Alliance, a community-based health system affiliated with Harvard Medical School.
A graduate of Boston Children’s Hospital’s Leadership Education in Neurodevelopmental Disability fellowship, I’m a member of the Society of Participatory Medicine and Mass Families Organizing for Change, involved in the Patient-Centered Outcomes Research Institute (PCORI) and I served on the board of the National Institute for Children’s Healthcare Quality. Partnering with Tufts Medical School and Harvard Medical School, my family and I welcomed third-year medical students into our home to share our experience. I speak regularly about authentic family-provider partnerships nationally at conferences such as the Institute for Healthcare Improvement (IHI) and the Association of Maternal and Child Programs (AMCHP) and represent patients and families for organizations like the Patient-Centered Outcomes Research Institute (PCORI) and the Institute of Medicine.
I am also research and develop a family-driven care coordination innovation using a tool I created to coordinate my son’s own care called Care Mapping.
I recently moved from Massachusetts with my husband, son and daughter to Stockholm Sweden. I continue my work on improving health care through innovative partnerships by supporting the development of quality registries, when I’m not spending my time figuring out how to navigate a new health care and education system for our son.
I welcome you to join in an on-going conversation about collaborating for systems change by subscribing to this blog, in which I write regularly about the experience of living in a complex special needs family or by connecting with my on Twitter @DurgasToolbox.
February 11, 2013: Association of Mother & Child Health Programs (AMCHP) Annual Conference. Activating Authentic Family-Professional Partnerships Within the Massachusetts CHIPRA-Funded Statewide Child Health Quality Initiatives.
March 9, 2013: Federation for Children with Special Needs, Visions of Community. Care Mapping: An innovative tool and process form families managing the care of children with complex special needs.
April 7, 2013: IHI (Institute for Healthcare Improvement) International Summit on Improving Patient Care in the Office Practice and the Community. Transformation as a Safety Net: The ACO/PCMH Model at Cambridge Health Alliance.