I am a researcher, educator, manager, and nurse. The common threads throughout my career have been a desire to improve access, equity, and quality of family-centred clinical care; and my interest in the relationship dynamics between consumers and providers of health care.
Currently co-leading various GELS projects relating to genomics, decisional science, health economics, shared decision-making, and family-oriented research. E.g. DECIDE project: an interactive online educational tool and decision aid for families making genomic sequencing choices; SCOPE project: development and testing of a cost calculator for families' costs of caring for a child with developmental disabilities; OPTION project: assessment of the degree which genetic counselors practice shared decision-making.
The Friedman Lab’s long-term neurofibromatosis (NF) research program works to improve understanding of the natural history of NF and the pathogenetic mechanisms underlying it. This includes studies of the cardiovascular and orthopedic complications, the clinical course of optic gliomas and other brain tumours, and other manifestations of the condition. Supporting quality of life, and providing optimal clinical care is an important issue for families with NF.
Several other research projects focus on patient-centred care. The first relates to health economics, particularly the out-of-pocket costs to families , and the non-medical societal costs of caring for children with intellectual disabilities. Surprisingly, these cost data did not previously exist in Canada and are poorly studied elsewhere in the world. We have developed, tested, and published an online tool to capture families’ and society’s costs of caring for children with developmental challenges and other conditions. In this way we can assess the impact of introducing new tests or treatments for these children.
Our lab’s involvement in genome-wide sequencing provides the opportunity to assess the best ways to support families’ decisions regarding genomic testing: We have developed DECIDE, an online, interactive educational tool and decision-aid designed to improve families’ understanding of issues surrounding genome-wide sequencing, and help support their choices. Use of such decision-aids has been shown to promote informed decisions that are consistent with the user’s values. We are studying the efficacy and acceptability of DECIDE for families’ genomic testing decisions. We are also measuring the outcomes for those who choose genomic testing, including psychological benefit or burden, the impact on quality of life, empowerment, and the ability to adapt and cope for parents and other family members.Grants
2014-2015 Principal Applicant “Diagnosing the Causes of Complex Intellectual Disability
a decision support tool for families Rare Disease Foundation, $3,500
2013-2014 Principal Applicant DECIDE-Genomics
2013-2015 Co-investigator Assessing Shared Decision Making in Genetic Counselling of High-Risk Pregnancies APOGEE/CanGene, $25,000. PI
Does Genome-Wide Sequencing Result in Cost Savings to Healthcare, Families and Society?” Rare Disease Foundation, $3,500.
2013-2014 Principal Applicant Costs of Caring for Children with Rare Diseases Rare Disease Foundation, $3,500
2015-2016 Principal Applicant What is the prevalence and natural history of optic-and non-optic glioma in adults with neurofibromatosis 1 (NF1)? Rare Disease Foundation, $3,500Research Group Members
Shelin Adam, Investigator and Research Genetic Counsellor, BC Children's Hospital
Hilal Al Shekaili, PhD Candidate
Sura Alwan, Bilingual Arabic-speaking Research Coordinator
Indhu Shree Rajan Babu, Postdoctoral Research Fellow
Megan Chan, Student
Madeline Couse, Bioinformatician
Sarah Dada, Rotation Student
Nicolas Dragojlovic, Research Associate
Jan Friedman, Investigator, BC Children's Hospital
Colleen Guimond, Genetic Counsellor
Julia Handra, Research Assistant
Axel Hauduc, Graduate Rotation Student
Elisa Lau, Undergrad Academic Asst
Jacqueline Li, Graduate Research Assistant
Nicole Liang, Research Assistant
Liza Mak, Administrative Coordinator
Andrew Nguyen, Medical Student
Jasmine Peng, Research Assistant
Anastasia Richardson, Program Manager
Kamran Shabbir, International visiting trainee - doctoral student:Trainee
Sophia Shen, FLEX Student
Simya Surani, Project Assistant
Christele du Souich, Investigator, BC Children's Hospital