Citizen science to further precision medicine: from vision to implementation

Author:

Petersen Carolyn1,Austin Robin R2,Backonja Uba34,Campos Hugo5,Chung Arlene E6,Hekler Eric B7,Hsueh Pei-Yun S8,Kim Katherine K9,Pho Anthony10,Salmi Liz11,Solomonides Anthony12,Valdez Rupa S13

Affiliation:

1. Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, USA

2. School of Nursing, University of Minnesota, Minneapolis, Minnesota, USA

3. Nursing & Healthcare Leadership, University of Washington Tacoma, Tacoma, Washington, USA

4. Biomedical Informatics & Medical Education, University of Washington School of Medicine, Seattle, Washington, USA

5. Kaiser Permanente, Kaiser Permanente Innovation, Oakland, California, USA

6. Departments of Internal Medicine and Pediatrics & the Program on Health & Clinical Informatics, UNC School of Medicine, Chapel Hill, North Carolina, USA

7. Department of Family Medicine & Public Health, Center for Wireless & Population Health Systems, Design Lab, Qualcomm Institute, University of California-San Diego, San Diego, California, USA

8. Center for Computational Health, IBM TJ Watson Research Center, Yorktown Heights, New York, USA

9. Betty Irene Moore School of Nursing, Department of Public Health Sciences-School of Medicine, University of California-Davis, Sacramento, California, USA

10. School of Nursing, Columbia University, New York, New York, USA

11. OpenNotes/Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA

12. Family Medicine, NorthShore University HealthSystem, Evanston, Illinois, USA

13. Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, Virginia, USA

Abstract

AbstractThe active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

Reference90 articles.

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