Miriam Kaufman is a paediatrician and adolescent health specialist at SickKids in Toronto, Ontario. She is the Head of the Division of Adolescent Medicine at SickKids and a Professor of Paediatrics at the University of Toronto.
All adolescent medicine specialists, whether they are nurses, doctors, social workers, psychologists, creative arts therapists, dieticians or child and youth counsellors, are interested in the patient experience and promoting self-advocacy and interventions that improve quality of life.
As an author, Miriam has written or co-written a number of books for adolescents, young adults and parents. The patient experience is most reflected in two books—“The Ultimate Guide to Sex and Disability” (Cleis Press) which she wrote with Cory Silverberg and Fran Odette and “Easy for You to Say: Q&As for Teens Living with Chronic Illness or Disability” (Firefly Books). The key to writing both of these was listening to her patients and others about their experiences. Miriam has a strong belief that her knowledge and understanding should be shared and not hoarded.
As a clinician and teacher, Miriam cares for adolescents with chronic health conditions, including lupus and solid organ transplants. For the past 10 years, she has been very involved in efforts to improve the transition from paediatric to adult healthcare, founding the Good 2 Go Transition Program at SickKids and designing MyHealth Passport, an online program that allows people to create a wallet-sized card with their important information, with a mobile version coming soon. With no advertising, thousands of people (ranging in age from parents creating them for their 2 year olds to people in their 90’s) have heard about and created these tools for self-education and information sharing on www.sickkids.ca/myhealthpassport. Miriam is also the creator of MyLupus App, which will be available in late 2015.
Miriam believes that enhancing the patient experience involves being knowledgeable about complex conditions and resources to treat them, listening to patients and putting herself in their shoes. Now in her 60’s, she still feels that she has lots to learn and is glad that her patients are still willing to teach her!