1. Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use
We wanted to kick-off this meeting by reviewing:
The overall objectives of the Generating Stakeholder Support and Demand Initiative; and
Beginning the discussion of the vision of a health system that leverages and links data to support continuous learning and improvement.

2. Vision Statement
A health care system that shares and applies routinely generated information to support continuous learning to transform health, health care, and health equity, and does so in a manner that enhances stakeholder trust, experience, and transparency in system performance.
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3. Initiative Aim
To transform the development of evidence and application of care innovations by generating stakeholder support and demand for leveraging and sharing data for continuous learning.
Key activities include:
building agreement around a vision for data sharing;
engaging stakeholders in conversations about ethical, regulatory, financial, and pragmatic barriers, opportunities, and strategies for promoting data sharing, linkage, and use; and
building a consortium of organizations committed to implementing identified principles and approaches.
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4. A Focus on the Demand Function
While we have the technological ability to share electronic data to support improvements in health care, major cultural and political barriers still exist
Driving support and demand among key stakeholder groups can be a catalyst for addressing those existing cultural and political barriers
Key stakeholder groups identified for this initiative include:
Patients and families
Research oversight leaders
Health care executives
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5. Research Oversight
Heterogeneity in beliefs about data sharing and use among health systems, clinicians, researchers, and patients/community members
Lack of a shared vision or principles regarding data ownership, rights, and responsibilities
Concerns by patients/communities about whether inappropriate use of shared data may lead to rationing care, discrimination, or other adverse consequences
Variability across institutions and states in their interpretation of regulations and responsibilities.
Uncertainty about future potential uses of data and whether data may be used for competitive advantage and/or commercial gain
Challenges related to data governance
Operational challenges including uneven data quality, the cost to procure data, and the lag time between when data is collected and when it is available for use by researchers
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6. Patients & Families
Patients wanting but not being granted access to health data (i.e., patients not being perceived as primary users of health data)
Insufficient appreciation of patients and their caregivers as key data providers (patient generated data, e.g., personal and contextual patient information, values and self-reported outcomes)
Lack of understanding how patient generated data offer value of workforce efficiency, data completeness and accuracy, and improving population health outcomes
Financial disincentives to data sharing
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7. Health Care Executives
Misaligned incentives including financial and security risks. The criminal and financial penalties of data breaches is a significant deterrent to data sharing.
Prioritization of the financial cost associated with sharing data. Although data liquidity is communally beneficial, health systems are reluctant to invest the tremendous capital and time required for building and maintaining the infrastructure for data sharing when the ROI for an individual actor is unknown or undeveloped.
Risks of harm associated with loss of competitive advantage and sensitivity. There is a perception that data transparency runs the risk of revealing information on comparative performance, cost structures, utilization, and contractual arrangements between hospital, payers, and suppliers and can result in a host of unintended consequences.
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