Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel

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  • Nowakowski, Alexandra “Xan” C. H.
    • ORCID: https://orcid.org/0000-0002-9072-2482
    • Other Affiliation: Florida State University College of Medicine, Director, United States Adult Cystic Fibrosis Association, Orlando, FL, USA
  • Balasa, Gabriella “Ella”
    • Other Affiliation: United States Adult Cystic Fibrosis Association, Richmond, VA, USA
  • Figueira, Miriam F.
    • Affiliation: School of Medicine, Cystic Fibrosis and Pulmonary Diseases Research and Treatment Center
  • LaRosa, Francis “Tré” J.
    • Other Affiliation: BioNews Insights, Washington, DC, USA
  • Lawlor, James M. J.
    • Other Affiliation: HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA
Abstract
  • Care for many progressive chronic diseases continues to improve, allowing patients to survive and thrive for longer periods of time1. People living with such conditions may now find themselves able to achieve long-term goals in education and career development2. Many people now occupy the dual roles of scientist and patient3. This commentary article synthesizes experiences of scientists and advocates with the progressive genetic disease cystic fibrosis (CF) who collaborated on a career development session for the Cystic Fibrosis Foundation’s inaugural ResearchCon event in 2019. It explores how such collaborations affirm and transform individual perspectives on patient science and its importance in broader scientific research agenda setting. We first share our own individual insights about the experience and impact of the ResearchCon panel session before progressing to discussion and future directions centering the shared insights from one another’s reflections.
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  • Article
Rights statement
  • In Copyright
Rights holder
  • SAGE Publications
License
  • Attribution-NonCommercial 4.0 International
Journal title
  • INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Journal volume
  • 59
ISSN
  • 0046-9580
  • 1945-7243
Copyright date
  • 2022
Publisher
  • SAGE Publications

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