Dataset Information

Public Trust in Health Information Sharing: A Measure of System Trust.

ABSTRACT: OBJECTIVE:To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision medicine) that will expand the scope of data sharing. DATA SOURCES:Survey data (n = 1,011) were collected in February 2014. STUDY DESIGN:We constructed a composite index of four dimensions of system trust-competency, fidelity, integrity, and trustworthiness. The index was used in linear regression evaluating demographic and psychosocial predictors of system trust. DATA COLLECTION:Data were collected by GfK Custom using a nationally representative sample and analyzed in Stata 13.0. PRINCIPAL FINDINGS:Our findings suggest the public's trust may not meet the needs of health systems as they enter an era of expanded data sharing. We found that a majority of the U.S. public does not trust the organizations that have health information and share it (i.e., the health system) in one or more dimensions. Together, demographic and psychosocial factors accounted for ~18 percent of the observed variability in system trust. Future research should consider additional predictors of system trust such as knowledge, attitudes, and beliefs to inform policies and practices for health data sharing.

SUBMITTER: Platt JE

PROVIDER: S-EPMC5867170 | biostudies-other | 2018 Apr

REPOSITORIES: biostudies-other

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Public Trust in Health Information Sharing: A Measure of System Trust.

Platt Jodyn E JE Jacobson Peter D PD Kardia Sharon L R SLR

Health services research 20170118 2

<h4>Objective</h4>To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision medicine) that will expand the scope of data sharing.<h4>Data sources</h4>Survey data (n = 1,011) were collected in February 2014.<h ...[more]

PMID: 28097657

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Project description:BackgroundThere is increasing recognition of the importance of sharing research data within the international scientific community, but also of the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research. Public involvement is essential to building locally responsive research policies, including on data sharing, but little research has involved stakeholders from low-to-middle income countries.MethodsBetween January and June 2014, a qualitative study was conducted in Kenya involving sixty stakeholders with varying experiences of research in a deliberative process to explore views on benefits and challenges in research data sharing. In-depth interviews and extended small group discussions based on information sharing and facilitated debate were used to collect data. Data were analysed using Framework Analysis, and charting flow and dynamics in debates.FindingsThe findings highlight both the opportunities and challenges of communicating about this complex and relatively novel topic for many stakeholders. For more and less research-experienced stakeholders, ethical research data sharing is likely to rest on the development and implementation of appropriate trust-building processes, linked to local perceptions of benefits and challenges. The central nature of trust is underpinned by uncertainties around who might request what data, for what purpose and when. Key benefits perceived in this consultation were concerned with the promotion of public health through science, with legitimate beneficiaries defined differently by different groups. Important challenges were risks to the interests of study participants, communities and originating researchers through stigmatisation, loss of privacy, impacting autonomy and unfair competition, including through forms of intentional and unintentional 'misuse' of data. Risks were also seen for science.DiscussionGiven background structural inequities in much international research, building trust in this low-to-middle income setting includes ensuring that the interests of study participants, primary communities and originating researchers will be promoted as far as possible, as well as protected. Important ways of building trust in data sharing include involving the public in policy development and implementation, promoting scientific collaborations around data sharing and building close partnerships between researchers and government health authorities to provide checks and balances on data sharing, and promote near and long-term translational benefits.

Dataset Information

Public Trust in Health Information Sharing: A Measure of System Trust.

Publications

Public Trust in Health Information Sharing: A Measure of System Trust.

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