data sharing

Convening diverse stakeholders is an integral part of effecting change, especially in a space as complex as health care. To that end, those of us seeking to improve health outcomes are beneficiaries of the unique convening capabilities of the National Academy of Medicine (NAM) as well as AcademyHealth. Hearing different perspectives is a way to connect with others, discover opportunities, and build new capabilities. To that end, a new report from the NAM exemplifies the potency of bringing multiple viewpoints to bear on national challenges, and AcademyHealth’s Health Datapalooza and National Health Policy Conference served as an ideal venue for sharing key findings from this report via a multi-stakeholder panel discussion.

Released in November 2020, Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust is the culmination of a two-year convening activity funded by the Patient-Centered Outcomes Research Institute (PCORI) to identify and prioritize key barriers to sharing health data from the perspective of three groups: patients and families, researchers and research oversight leaders, and health care executives. The groups, comprised of 40 individuals with first-hand experience with this issue, also sought to identify successful approaches to addressing the identified barriers (e.g., variable interpretations of regulations such as HIPAA, and absence of a compelling business model for sharing data externally). The project focused intentionally on regulatory, operational, financial, and sociocultural barriers—rather than technology-related barriers—since technology barriers are often more tractable than barriers in these other domains. During their deliberations, the three stakeholder groups identified overlapping barriers and attained consensus about the most important action steps that could reasonably be implemented in 1-3 years.

The final NAM report details the barriers from the perspective of each stakeholder group, as well as convergent barriers. A key concern shared by all three groups was 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 both the data and the conclusions based on those data available to them. Patients also worry that health systems and researchers will misuse patient data by rationing care or sharing it with unauthorized third parties. Researchers also expressed mistrust in the intentions of third-party users. Health systems are hesitant that patients will misinterpret data or use it inappropriately, noting concerns that peer-to-peer sharing could expose cybersecurity vulnerabilities and reputational harm. Specific examples shared during the project’s capstone meeting in August 2019 included very stark and concerning discussions, such as a dialysis clinic that refused to release a patient’s data that he wanted to share with researchers, or lack of cooperation between two health systems that refused to even refer to each other by name because of the competition between them. Ultimately, this lack of trust stems from the diverging interests of each group and the lack of common cause among the three groups.

This reinforces the importance of convening. By hearing one another’s perspectives and concerns first-hand, project participants came away with a different understanding and new appreciation for the rationale patients or health systems might apply in deciding when and how to share data they hold. That action can build trust at the individual level, and help reinforce trust in institutions. Thus, in an effort to relay these key barriers and stakeholder perspectives to a wider audience, several participants from this project (including its Steering Committee chairs) gave a panel at AcademyHealth’s annual Health Datapalooza and National Health Policy Conference. I moderated a panel with colleagues from Cincinnati Children’s Hospital, the National Partnership for Women and Families, PCORI, and the NAM.  We discussed the key insights from the project and its resulting report, then engaged in lively conversation about how to restore the current trust gap in science, and whether trust can be scaled. A memorable insight from panel came from the project’s Steering Committee chair, Peter Margolis, who said “trust cannot be regulated—it has to be cultivated.”  

The imperative for leveraging data to improve health and health care is growing in importance, particularly in the wake of the COVID-19 pandemic, and the health inequities it revealed and magnified. As noted in the NAM report, “Historic and current misuses of data have only further diminished public trust in institutions that rely on data for advancing progress.” Thus, sharing data to support health equity and health improvement must be accompanied by principled stewardship and full transparency. Bringing people together at events like AcademyHealth’s Health Datapalooza and National Health Policy Conference, even virtually, is a step toward progress and can provide a steppingstone for tackling health care’s toughest questions. An attendee at our panel observed: “It is in convenings, such as these, that trust and understanding are built.” I agree completely.

Ms. Greene serves as a Senior Advisor to the National Academy of Medicine and provided consulting assistance to the execution of the publication described in this post. Her expressed opinions are hers alone and do not represent views or positions of the National Academy of Medicine.

The panel mentioned in this post was recorded and is available to registrants of the National Health Policy Conference and Health Datapalooza in the virtual platform until May 19, 2020.

Sarah Greene
Member, Presenter

Sarah Greene, M.P.H.

Consultant and Senior Advisor - the National Academy of Medicine

Sarah Greene, MPH, is the Executive Director of the Health Care Systems Research Network (HCSRN, formerly the ... Read Bio

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