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      Citizen science to further precision medicine: from vision to implementation

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          Abstract

          The 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.

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          Citizen science. Next steps for citizen science.

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            The eBird enterprise: An integrated approach to development and application of citizen science

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              Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead.

              Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors' office notes. To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals. Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors' notes. Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington. 105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period. Portal use and electronic messaging by patients and surveys focusing on participants' perceptions of behaviors, benefits, and negative consequences. 11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients' questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability. Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption. The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.
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                Author and article information

                Journal
                JAMIA Open
                JAMIA Open
                jamiaoa
                JAMIA Open
                Oxford University Press
                2574-2531
                April 2020
                03 December 2019
                03 December 2019
                : 3
                : 1
                : 2-8
                Affiliations
                [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
                Author notes
                Corresponding Author: Carolyn Petersen, MS, MBI, FAMIA, Division of Biomedical Statistics and Informatics, Mayo Clinic, Minnesota BioBusiness Building, Rochester, MN, 55905, USA; petersen.carolyn@ 123456mayo.edu
                Article
                ooz060
                10.1093/jamiaopen/ooz060
                7309265
                32607481
                7b29aa33-d97d-4c07-85b6-08edbc60e68d
                © The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com

                History
                : 15 January 2019
                : 04 September 2019
                : 25 October 2019
                Page count
                Pages: 7
                Categories
                Perspective

                research methodology,healthcare systems,community participation,consumer involvement,patient acceptance of healthcare,citizen science

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