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IDEA Lab<\/h1><\/div>
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Navigating Medical Uncertainty<\/p>\n<\/div><\/div><\/div><\/div><\/div>

About us<\/h2><\/div>

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.<\/p>\n<\/div><\/div><\/div>

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Streams of research<\/h2><\/div>

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.<\/p>\n<\/div>

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Integrating lived experience and data to inform complex decisions<\/h2><\/div>
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Children with severe neurologic impairment:<\/strong> 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.<\/p>\n<\/div><\/div><\/div>

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Understanding how families and clinicians navigate complex decisions<\/h2><\/div>
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Family-clinician partnership: <\/b>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.<\/div><\/div><\/div>
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Selected publications<\/h3><\/div>

Integrating lived experience and data to inform complex decisions
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<\/i><\/i><\/span>Children with severe neurologic impairment<\/span><\/a><\/h4><\/div>
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