Grant Number:	5R01CA214829-03 Interpret this number
Primary Investigator:	Kardia, Sharon
Organization:	University Of Michigan At Ann Arbor
Project Title:	The Lifecycle of Health Data: Polices and Practices
Fiscal Year:	2020

ABSTRACT The proposed project seeks to identify concrete policies and practices that can better serve both people and institutions in building local, state, and national health information systems necessary to maximize the potential of data throughout its life cycle. We will focus on 5 intertwined and endemic issues to the life cycle of data that arise in precision oncology: (1) informed consent, (2) duration of specimen storage; (3) storage of germline DNA sequence data (4) disclosed commercialization; and (5) data sharing at local, state, and national levels. Our proposed research will identify public preferences for specific policies and practices governing these issues thus addressing a major gap in understanding how the public views data as it flows across functional boundaries – clinical care, quality improvement, research and public health - and across local, state, and national levels. Our interdisciplinary research team with expertise in policy, learning health systems, ethics, precision oncology, and public health genomics has partnered with an expert advisory team that spans these levels and boundaries. Specifically, at the local level we are engaging the University of Michigan Health Systems Institutional Review Board (IRB), Comprehensive Cancer Center, Central Biorepository, Compliance Office, and precision oncology researchers (MI-ONCOSEQ). At the state level, we are interacting with the Michigan Health Information Network (MiHIN) that coordinates 10 health exchanges with the Michigan Department of Health and Human Services. At the national level, we are engaging with the multi-state PCORI-funded LHSnet, the American Society of Clinical Oncology’s CancerLINQ, which will combine data across practices for quality improvement. Using an explanatory sequential design, we will investigate the public’s knowledge, attitudes, and acceptance of data policies and practices using case studies that illustrate the life cycle of data in precision oncology (n=3,500) (Aim 1) and conduct deliberative sessions to identify recommendations for changes in institutional practices/policies (n=225) (Aim 2). We will then quantitatively assess whether these recommendations ameliorate concerns and identify optimal policies through conjoint analysis using a longitudinal follow-up survey conducted at the state and national scale (n=2,500) (Aim 3).




Applying anti-racist approaches to informatics: a new lens on traditional frames.
Authors: Platt J. , Nong P. , Merid B. , Raj M. , Cope E. , Kardia S. , Creary M. .
Source: Journal of the American Medical Informatics Association : JAMIA, 2023-09-25; 30(10), p. 1747-1753.
PMID: 37403330
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US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.
Authors: Wagner A.L. , Zhang F. , Ryan K.A. , Xing E. , Nong P. , Kardia S.L.R. , Platt J. .
Source: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 2023 Sep; 26(9), p. 1301-1307.
EPub date: 2023-02-01.
PMID: 36736697
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A Critical Analysis of White Racial Framing and Comfort with Medical Research.
Authors: Nong P. , Creary M. , Platt J. , Kardia S. .
Source: AJOB empirical bioethics, 2023 Apr-Jun; 14(2), p. 65-73.
EPub date: 2023-01-03.
PMID: 36594825
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Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.
Authors: Raj M. , Ryan K. , Amara P.S. , Nong P. , Calhoun K. , Trinidad M.G. , Thiel D. , Spector-Bagdady K. , De Vries R. , Kardia S. , et al. .
Source: JMIR cancer, 2023-01-31; 9, p. e39631.
EPub date: 2023-01-31.
PMID: 36719719
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Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.
Authors: Raj M. , Ryan K. , Nong P. , Calhoun K. , Trinidad M.G. , De Vries R. , Creary M. , Spector-Bagdady K. , Kardia S.L.R. , Platt J. .
Source: JMIR cancer, 2022-09-16; 8(3), p. e37793.
EPub date: 2022-09-16.
PMID: 36112409
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Reported Interest in Notification Regarding Use of Health Information and Biospecimens.
Authors: Spector-Bagdady K. , Trinidad G. , Kardia S. , Krenz C.D. , Nong P. , Raj M. , Platt J.E. .
Source: JAMA, 2022-08-02; 328(5), p. 474-476.
PMID: 35916854
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Discrimination, trust, and withholding information from providers: Implications for missing data and inequity.
Authors: Nong P. , Williamson A. , Anthony D. , Platt J. , Kardia S. .
Source: SSM - population health, 2022 Jun; 18, p. 101092.
EPub date: 2022-04-07.
PMID: 35479582
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A conceptual framework for clinical and translational virtual community engagement research.
Authors: Rubyan M. , Trinidad M.G. , Ryan K.A. , Spiroff M. , Goold S. , Burns J. , Calhoun K. , Rowe Z. , Büyüktür A.G. , Piechowski P. , et al. .
Source: Journal of clinical and translational science, 2022; 6(1), p. e136.
EPub date: 2022-10-28.
PMID: 36590362
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Patient-Reported Experiences of Discrimination in the US Health Care System.
Authors: Nong P. , Raj M. , Creary M. , Kardia S.L.R. , Platt J.E. .
Source: JAMA network open, 2020-12-01; 3(12), p. e2029650.
EPub date: 2020-12-01.
PMID: 33320264
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Privacy Gaps for Digital Cardiology Data: Big Problems With Big Data.
Authors: Golbus J.R. , Price W.N. , Nallamothu B.K. .
Source: Circulation, 2020-02-25; 141(8), p. 613-615.
EPub date: 2020-02-24.
PMID: 32091926
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Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample.
Authors: Raj M. , De Vries R. , Nong P. , Kardia S.L.R. , Platt J.E. .
Source: PloS one, 2020; 15(12), p. e0244767.
EPub date: 2020-12-31.
PMID: 33382835
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The public's comfort with sharing health data with third-party commercial companies.
Authors: Trinidad M.G. , Platt J. , Kardia S.L.R. .
Source: Humanities & social sciences communications, 2020; 7(1), .
EPub date: 2020-11-11.
PMID: 34337435
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Willingness to Participate in Health Information Networks with Diverse Data Use: Evaluating Public Perspectives.
Authors: Platt J. , Raj M. , Büyüktür A.G. , Trinidad M.G. , Olopade O. , Ackerman M.S. , Kardia S. .
Source: EGEMS (Washington, DC), 2019-07-25; 7(1), p. 33.
EPub date: 2019-07-25.
PMID: 31367650
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Shadow health records meet new data privacy laws.
Authors: Price W.N. , Kaminski M.E. , Minssen T. , Spector-Bagdady K. .
Source: Science (New York, N.Y.), 2019-02-01; 363(6426), p. 448-450.
PMID: 30705168
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Privacy in the age of medical big data.
Authors: Price W.N. , Cohen I.G. .
Source: Nature medicine, 2019 Jan; 25(1), p. 37-43.
EPub date: 2019-01-07.
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Big data and black-box medical algorithms.
Authors: Price W.N. .
Source: Science translational medicine, 2018-12-12; 10(471), .
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Encouraging Participation And Transparency In Biobank Research.
Authors: Spector-Bagdady K. , De Vries R.G. , Gornick M.G. , Shuman A.G. , Kardia S. , Platt J. .
Source: Health affairs (Project Hope), 2018 Aug; 37(8), p. 1313-1320.
PMID: 30080467
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