Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel
| Autor: | Alexandra “Xan” C. H. Nowakowski PhD, MPH, Gabriella “Ella” Balasa BS, Miriam F. Figueira PhD, Francis “Tré” J. LaRosa BS, James M. J. Lawlor MS |
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| Jazyk: | angličtina |
| Rok vydání: | 2022 |
| Předmět: | |
| Zdroj: | Inquiry: The Journal of Health Care Organization, Provision, and Financing, Vol 59 (2022) |
| Druh dokumentu: | article |
| ISSN: | 0046-9580 1945-7243 00469580 |
| DOI: | 10.1177/00469580221086921 |
| Popis: | Care for many progressive chronic diseases continues to improve, allowing patients to survive and thrive for longer periods of time 1 . People living with such conditions may now find themselves able to achieve long-term goals in education and career development 2 . Many people now occupy the dual roles of scientist and patient 3 . 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. |
| Databáze: | Directory of Open Access Journals |
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