Grant Details
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
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).
Publications
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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
Related Citations
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.
PMID: 30617331
Related Citations
Big data and black-box medical algorithms.
Authors: Price W.N.
.
Source: Science translational medicine, 2018-12-12; 10(471), .
PMID: 30541791
Related Citations
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
Related Citations