IDEA Lab

Navigating Medical Uncertainty

About us

The Integrating Data, Experience, and Advocacy (IDEA) Lab, led by Dr. Kate Nelson, develops strategies and evidence to support families and clinicians navigating medical uncertainty through two streams of multimethod research. Our projects are developed with ongoing input from the IDEA Lab Vision Team, which includes three parents and one young adult who have lived experience with childhood serious illness.

Streams of research

Our first stream or research integrates family and clinician expertise with Ontario health administrative data to improve the evidence base for specific complex decisions. The second stream works to better understand and improve the experience of navigating complex decisions for families.

Integrating lived experience and data to inform complex decisions

Children with severe neurologic impairment: Children with severe neurologic impairment have medical complexity from more than 400 genetic and neurologic diagnoses, yet are identified as a group because of their common non-neurologic comorbidities, like gastroesophageal reflux disease. Through surveys, interviews, and use of health administrative data, we are working to better understand how these comorbidities present and evolve over time.

Understanding how families and clinicians navigate complex decisions

Family-clinician partnership: Parents of children with serious illness frequently partner with clinicians to make medical decisions. We are exploring multiple aspects of this partnership including how families build decision-making skills, how clinicians conceptualize family partnership, how family meetings are used in pediatrics, and what happens when there is conflict between families and clinicians.

Selected publications

Integrating lived experience and data to inform complex decisions

Children with severe neurologic impairment

Nelson KE, Zhu J, Thomson J, Mahant S, Widger K, Feudtner C, Cohen E, Pullenayegum E, Feinstein JA. Recurrent Intensive Care Episodes and Mortality Among Children With Severe Neurologic Impairment. JAMA Network Open. 2024 Mar 4;7(3):e241852
Nelson KE, Finlay M, Huang E, Chakravarti V, Feinstein JA, Diskin C, Thomson J, Mahant S, Widger K, Feudtner C, Cohen E. Clinical characteristics of children with severe neurologic impairment: A scoping review. J Hosp Med. 2023 Jan;18(1):65-77. doi: 10.1002/jhm.13019. Epub 2022 Dec 8.
Nelson KE, Chakravarti V, Diskin C, Thomson J, Cohen E, Mahant S, Feudtner C, Widger K, Pullenayegum E, Berry JG, Feinstein JA. Validation of Neurologic Impairment Diagnosis Codes as Signifying Documented Functional Impairment in Hospitalized Children. Academic Pediatrics. 2022 Jul 1;22(5):782-8. doi:10.1016/j.acap.2021.07.014
Nelson KE, Rosella LC, Mahant S, Cohen E, Guttmann A. Survival and Health Care Use After Feeding Tube Placement in Children With Neurologic Impairment. Pediatrics. 2019 Feb;143(2): e20182863. doi: 10.1542/peds.2018-2863.
Nelson KE, Lacombe-Duncan A, Cohen E, Nicholas DB, Rosella LC, Guttmann A, Mahant S. Family Experiences with Feeding Tubes in Neurologic Impairment: A Systematic Review. Pediatrics. 2015 Jul; 136(1):e140-151.

Children with trisomy 13 and 18

Nelson KE, Rosella LC, Mahant S, Guttmann A. Survival and Surgical Interventions for Children with Trisomy 13 and 18. JAMA. 2016 Jul 26;316(4):420–8.
Nelson KE, Hexem KR, Feudtner C. Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States. Pediatrics. 2012;129(5):869-76.

Understanding how families and clinicians navigate complex decisions

Family-clinician partnership

Finlay M, Chakravarti V, Buchanan F, Dewan T, Adams S, Mahant S, Nicholas D, Widger K, McGuire KM, Nelson KE. Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity. Journal of Pain and Symptom Management. 2024 May 28.

View our publications on PubMed or Google Scholar

Meet our team

Principal Investigator

Dr. Kate Nelson MD, PhD, FRCP(C)

Dr. Kate Nelson is a Clinician Scientist in the Division of Paediatric Medicine at The Hospital for Sick Children (SickKids), a Scientist in Child Health Evaluative Sciences program at SickKids Research Institute, an Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES) and an Assistant Professor of Paediatrics at the University of Toronto. Dr. Nelson received undergraduate degrees in chemistry and English at the University of Missouri-Columbia, her medical degree from Harvard University and a PhD in clinical epidemiology from the Institute of Health Policy, Management and Evaluation at the University of Toronto. She completed her residency at the Children’s Hospital of Philadelphia and a paediatric palliative care fellowship at Boston Children’s Hospital. Her program of research focuses on supporting families making difficult decisions for children with potentially life-limiting illnesses.

As a paediatrician on the Paediatric Advanced Care Team (PACT) at SickKids, Dr. Nelson helps families of children with potentially life-limiting illnesses find ways to make time at home or in hospital a little better. Very often, this process involves difficult decisions, usually in situations where there is little evidence for guidance. As principal investigator of the IDEA Lab, Dr. Nelson’s goal is to support family decision-making for children with serious illnesses.