Digital Infrastructure for the Learning Health System The Foundation for Continuous Improvement in Health and Health Care: Workshop Series Summary (2011) / Chapter Skim
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5 Weaving a Strong Trust Fabric
5 Weaving a Strong Trust Fabric
Pages 149-166
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From page 149... ...
Examinations range from a focus on the sociotechnical components of privacy and the risk–benefit calculation in health information exchange to technical approaches to ensuring data privacy and security. Edward Shortliffe of the American Medical Informatics Association addresses the need to build a strong fabric of trust among stakeholders by communicating and demonstrating value.
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From page 150... ...
Key elements of the framework include an open and transparent process, specification of purpose, individual participation and control, and accountability and oversight. Closing with a warning that overreliance on consent leads to weak protection -- shifting the burden of privacy protection to the individual -- and that existing regulations are insufficient to cover the emerging issues of a learning health system, she notes the need for a trust fabric based on fair information practices.
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From page 151... ...
Thus all the laudable goals we seek with the use of health information technology (HIT) that are under discussion at this workshop are dependent on a "fabric of trust" -- the willingness of individuals and, by extension, society to contribute personal data and clinical experiences to the development of a learning healthcare system.
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From page 152... ...
When I recently moved to a new city and had to identify a primary care provider, I decided to rule out any physician or provider organization that lacked the infrastructure or philosophy that would allow me to communicate through e-mail with my physician and his office staff. Frustrated by my recent experience in another city, I swore that I would never again subject myself to a healthcare environment or physician who had not adopted modern electronic means of communication, data management, and information dissemination.
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From page 153... ...
The emphasis is not on the technology per se but on current trends in adoption, acceptance, and pursuit of e-health solutions. Documenting relatively low use of information technology for health purposes by certain segments of society, the authors state a motivating argument that "in order to achieve the promise of health information technology, digital medicine must overcome the barriers created by political divisions, fragmented jurisdiction, the digital divide, the cost of technology, ethical conflicts, and privacy concerns" (West and Miller, 2009)
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From page 154... ...
Engaging the Public In educating the public about the ways in which the use of EHRs can be positive, the emphasis needs to be on aspects of their implementation that create a sense of value for individual patients or their families. The greater good -- for public health, research, or a learning health system -- must be viewed as secondary.
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From page 155... ...
and electronic health information exchange are engines of health reform and have tremendous potential to improve health, reduce costs, and empower patients. While some progress has been made on resolving the privacy and security issues raised by e-health, significant gaps remain and implementation challenges loom.
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From page 156... ...
Rather, enhanced privacy and security can enable higher levels of patient participation in health data collection and facilitate HIT and health information exchange. The core elements of such a comprehensive strategy include commonly used fair information practices, such as those articulated in the Markle Common Framework for Secure and Private Health Information Exchange (Markle Foundation, 2006)
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From page 157... ...
The evidence is clear that individuals pay little attention to consent forms, and too often don't understand the full implications of what they have agreed to. To ensure the highest level of privacy and security, we need fair information best practices to govern the digital infrastructure for a learning health system.
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From page 158... ...
De-Identified Data in a Learning Health System What is easy? One thing that is relatively easy to do is to build automated approaches to find and suppress patients' identifiers from structured health information.
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From page 159... ...
If a patient was distributed across multiple covered entities, it would be difficult to resolve the patient's presence without access to identifiers. In the healthcare domain, we can execute some record linkage techniques without revealing patient identifiers through certain cryptographic mechanisms, but the interpretation of HIPAA is such that we are not allowed to apply those encryption technologies even though the keys never get revealed.
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From page 160... ...
Additionally, in the state of Minnesota, only the year of birth is shown. There are always ways of intelligently surpassing, generalizing, or perturbing information such that you preserve the aggregate statistics or the statistics that a learning health system requires.
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From page 161... ...
Information technology is often deployed and operated with a view to risk mitigation or avoidance rather than to enable a learning health system. Data sharing is needed not only for individual patients, but also for population health and research studies.
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From page 162... ...
Scalability means that the cost of adding participants -- whether new institutions or new individuals -- is small. Without this property, technological obstacles too easily impede the new connections required to support patient mobility and research studies.
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From page 163... ...
An important technology here is the eXtensible Access Control Markup Language, frequently used to express access control policies. Distributed attribute management is an important adjunct to attributebased authorization.
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From page 164... ...
We need to spend more time studying these issues within the context of a learning health system. Auditability, scalability, and transparency are all properties that we should seek to realize as we design a secure learning health system.
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From page 165... ...
2007. The learning healthcare system: Workshop summary.
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