EXECUTIVE SUMMARY

Advances in the collection and use of health data offer tremendous opportunities to improve patient health outcomes, improve evidence-based decision making, and transform the nation’s health care system. While the technological capabilities exist, a number of ethical, regulatory, cultural, financial, and organizational barriers hamper the growth of data sharing. To accelerate progress toward addressing these barriers and to promote data sharing, linkage, and use, the National Academy of Medicine (NAM), in partnership with the Patient-Centered Outcomes Research Institute (PCORI), facilitated conversation within and among three stakeholder workgroups—health care executives, research and research oversight leaders, and patient and family leaders. The aim of this initiative is 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.

At the start of this undertaking, a 21-member multi-stakeholder steering committee, chaired by Erin Mackay of the National Partnership for Women & Families and Peter Margolis of Cincinnati Children’s Hospital Medical Center, developed a vision statement that describes an ideal state of data sharing in the U.S. health system.

Building on and responding to the vision statement, the aforementioned stakeholder workgroups developed individual statements (see Chapters 3, 4, and 5).

Each statement (1) describes the importance of data sharing, linkage, and use from the perspective of the stakeholder constituency; (2) identifies barriers to routine data sharing and use, and (3) puts forth successful long- and short-term approaches for addressing those barriers and strategies to build support for routine and widespread health data sharing. A key element of this initiative was a February 7, 2019, convening, during which members of the three stakeholder groups prioritized the most pressing barriers, considered common themes across stakeholder groups, and brainstormed action steps that are achievable within the next 2 or 3 years for advancing health data sharing, linkage, and use.

As the stakeholder statements solidified over the course of this initiative, they revealed a remarkable amount of overlap among the cultural, ethical, regulatory, and financial barriers to greater data sharing, linkage, and use (see Figure ES-1):

• The groups representing health care executives and patient and family leaders identified a misalignment of financial and other incentives as common barriers.
• The groups representing patient and family leaders and research and research oversight leaders identified a lack of agreed-upon practices and principles regarding patient data access, data control, and data ownership.
• The groups representing research and research oversight leaders and health care executives identified concerns regarding controversial uses of data, differing beliefs about whether data should be freely shared, and costs associated with data procurement.

A concern shared by all three stakeholder groups was a lack of trust in the intentions and actions of other groups. The patient and family community lacks trust that health care systems and researchers will make data and the conclusions based on those data available to them and will not misuse data they provide by rationing care and sharing it with unauthorized third parties. Researchers share a similar mistrust in the intentions of third-party users. Health systems are hesitant that patients and families will misinterpret data or use data inappropriately, such as allowing it to be combined with other elements so as to identify individuals.

The overlapping and unique barriers of each stakeholder statement, along with the accompanying short- and long-term solutions, were presented at an NAM meeting on August 23, 2019, to a broad array of outside experts, along with members of the working groups and steering committee. The purpose of the meeting was to invite outside experts to offer reactions to the vision statement and stakeholder statements and, together with the steering committee and working group members, identify several priorities for the nation to address the barriers to data sharing, linkage, and use.

Recognizing that greater knowledge is essential to move data sharing forward, it was suggested that a widely disseminated public information campaign could help change attitudes and behaviors by showing consumers how the use of health data could improve their rights to data sharing. Foundational to devising a national educational campaign, the development of use cases that promote various reasons for sharing and linking health data could help build demand for data sharing and demonstrate how to overcome the barriers identified by the stakeholder groups and achieve the vision described in Chapter 2. Each stakeholder in the health care system will need to see the advantages of moving toward greater data sharing. Particularly in the private sector, this will require the development of compelling business cases that clearly demonstrate these advantages and return on investment. A business case can demonstrate how data sharing is useful and brings benefits to multiple parties, including the consumers of health care.

On a macro scale, new payment models that incentivize paying for value and outcomes, rather than paying for volume of care that is delivered, could have concurrent benefits to the imperative for more seamless data sharing. Another proposed solution is institution-supportive government policies. Policies such as the Centers for Medicare & Medicaid Services’ Interoperability and Patients Access rules can establish ground rules and standards for data exchange across networks, as well as support the development of technologies and systems that promote, rather than impede, data sharing. In addition, all funders of research, not just government entities, can require researchers to make their data available to other researchers and to research participants.

Overall, greater trust and transparency among stakeholder groups can both foster and support data sharing. Standards of conduct can build trust, because people know what to expect. Collaborative efforts built on trust can convert zero-sum relationships into positive-sum relationships, where data sharing serves everyone’s interests.

However, trust has to be built and sustained thoughtfully and intentionally, given that it is a fragile commodity and can easily be lost. This includes making consumers of health care come first, through business plans and the actions of those in the organization.

To implement these actions, participants of the August 23 meeting also discussed a wide array of resources that are both needed and available to achieve the goal of greater data sharing. Though the stakeholder groups were directed not to address the technical barriers to greater data sharing, computational technologies are a major part of the resources needed to achieve the priorities the groups identified. These technologies can provide solutions, such as

enabling audit trails, to enforce compliance with regulations or balancing access with security and privacy. One example is third-party applications that enable consumers to access clinical data and, as a result, interact much more directly with their health data.

Some data-sharing initiatives can begin with small groups, such as patients with particular diseases, and then spread more widely, as exemplified by the creation of many of PCORI’s Patient-Powered Research Networks. Others may start with particular institutions and then be adopted or adapted in other settings. A consortium of organizations rallied around a shared framework and commitment to stewarding progress on data linkage, sharing, and use could produce greater collaboration and faster progress.

These strategies could unlock data sharing at a critical time, when the U.S. health care system faces the momentous challenge of rising costs and subpar health outcomes, as well as an unprecedented opportunity given the wealth of digital technologies. With enhanced health data sharing, a vision of a continuously learning health system, in which science, informatics, incentives, and culture are aligned to yield continuous improvement, innovation, and equity, is attainable. Doing so requires addressing the existing cultural, ethical, regulatory, and financial barriers to data sharing, and building support and demand for data-sharing efforts across and among key stakeholders, including patients and caregivers, clinicians, health care executives, and researchers. Effective action on the potential of data sharing requires the strong commitment of all of these stakeholders to create a vision of how to overcome these barriers.

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