Clinical Data as the Basic Staple of Health Learning Creating and Protecting a Public Good: Workshop Summary (2010) / Chapter Skim
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3 Changing the Terms: Data System Transformation in Progress
3 Changing the Terms: Data System Transformation in Progress
Pages 109-136
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From page 109... ...
With significant volumes of clinical data housed in public and private repositories across the nation, pioneers are seeking opportunities to use these data to gain powerful insights by synthesizing elements of multiple data sources. Portions of the data stored by healthcare organizations are undergoing transformation -- linking large datasets, aggregating health databases, networking for standardized reporting, and developing and interpreting registries.
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From page 110... ...
Pierre-André La Chance, chief information officer and research privacy officer at the Kaiser Permanente Center for Health Research, offers strategies on cross-institution data sharing through local, interoperable data warehouses and data networks. With an interconnected approach to data, researchers can access data resources more efficiently; the data have higher quality and reliability for generating analyses and decisions that affect both treatment and policy.
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From page 111... ...
The ASCD, the largest of three distinct databases in the STS National Database, is a clinical registry aimed at continuous quality improvements in cardiac surgery. In an effort to push information to the bedside, the STS makes an individual risk calculator, including current risk adjustment information, available to the public.
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From page 112... ...
The challenges faced by caBIG are quite substantial, but are similar to those faced by those addressing the broader agenda of trying to share health information to improve patient care. caBIG is focused on the immediate problem of cancer.
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From page 113... ...
From Feudalism to Democracy In our preliminary thinking, we looked at large conglomerations of people who have tried to organize themselves before. We hoped we could learn something from their models and their experiments, even if they were unrelated to health care, cancer research, or technology.
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From page 114... ...
This model is the most successful model in our view, not just because it's cancer research, but because it applies to biomedical data exchange in general. From such deliberations, we created an organization that elaborates on this notion of control and oversight at the center, but nonetheless
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From page 115... ...
We can add more if necessary, but the ones in place now are based on a national discussion of priorities -- they include clinical trials; a category of all-inclusive integrated cancer research that includes genomics, proteomics, and other molecular-level dimensions; tissue banking and pathology; and imaging. We could have stopped there.
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From page 116... ...
In a real technical tour de force, we built on a number of existing projects that were dealing with the issue of interoperability to create a semantic data grid called caGrid.2 caGrid connects the disparate caBIG community systems. Some caBIG applications are in the area of clinical trials and have been deployed in a variety of cancer centers.
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From page 117... ...
at Kaiser Permanente Northwest and its research collaborators successfully meets these criteria. This work also provides data sharing across entities that compose the NIH's Clinical and Translational
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From page 118... ...
This paper will discuss these successes and how they can be extended to support data sharing across the CTSA program, even as many entities create their own clinical data repositories. Data sharing has changed substantially over the past two decades at Kaiser Permanente.
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From page 119... ...
As CHR's chief information officer, I have viewed countless initiatives toward data warehousing and data sharing. Typically, they get about 2 or 3 years out then fail because the person who championed the project leaves the organization or because the effort became so grand and expensive that it simply collapsed.
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From page 120... ...
The goal was to construct research-friendly, locally controlled data warehouses and associated data marts, without becoming prisoner to data warehousing methodologies. We also wanted to create networks of local interoperable data warehouses across collaborators to provide virtual data warehouses that would be well defined, at the byte level, the format level, and the standards and coding level.
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From page 121... ...
We have also shared data successfully within the Oregon Clinical and Translational Research Institute and between a health maintenance organization and a university medical setting. A key question for us now is this: Do we want to take the HMORN methodologies and use them within and across CTSAs to find out which data are most useful and how we can advance data-sharing methodologies?
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From page 122... ...
Director of the Center for Health Information Technology, American Academy of Family Physicians The holy grail of health information technology is its ability to drive rapid improvement in the quality and safety of healthcare delivery. To reach this goal, data must be correctly entered into applications in a structured and coded form.
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From page 123... ...
Functionalities adopted did not focus on quality improvement, e-prescribing, or population management. In short, physicians in the field are adopting the EHR and other technologies, not in the interest of data aggregation but because they are under business constraints to obtain complete and accurate documentation and to maintain productivity.
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From page 124... ...
A national entity is needed to address these issues by establishing best practice standards for data aggregation. We have been working in the AQA Alliance to articulate the concept of a National Health Data Stewardship Entity.
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From page 125... ...
The Department of Veterans Affairs Cardiac Surgery Advisory Group was formed in 1972, creating the first multi-institutional database monitoring cardiac surgery outcomes; it monitored volume and unadjusted operative mortality. Seminal randomized clinical trials first dem
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From page 126... ...
. Accordingly, this initiative by the federal government stimulated the establishment of The Northern New England Consortium and the Society of Thoracic Surgeons' Adult Cardiac Surgery Database to ensure that our profession had accurate risk-adjusted information on surgical performance.
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From page 127... ...
Database Description The STS ACSD is the largest database of the three distinct databases that make up the STS National Database. The ACSD is a voluntary clinical registry developed for the purpose of continuous quality improvement in cardiac surgery.
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From page 128... ...
. Comparing coronary bypass grafting risk-adjusted mortality to annual hospital volume, for example, low-volume programs have a wide dispersion and high variance in risk-adjusted mortality compared to higher volume centers.
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From page 129... ...
Between 1994 and 2003, predicted coronary bypass grafting operative mortality has increased while observed mortality has declined (Figure 3-2) (Shroyer et al., 2003; Welke et al., 2004)
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From page 130... ...
SOURCE: STS Adult Cardiac Database Isolated CABG Cases, 1994–2003. R01284 reported as a one-, two-, or three-star 3-2.eps Figure rating system and is provided to all vector, editable database participants.
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From page 131... ...
At this time, only a few STS sites can afford to independently accrue long-term information. Parallel linkage, adding new information by matching STS patient encounters to administrative databases, can also add tremendous value.
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From page 132... ...
. By adding longitudinal outcome data through locally supported patient contact and interaction with the National Death Index, we have been able to evaluate the three main treatment alternatives for patients with documented coronary artery disease (coronary artery bypass grafting, percutaneous coronary intervention such as stenting, or optimal medical therapy)
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From page 133... ...
SOURCE: This article was published in the Annals of Thoracic Surgery, Vol. 82, Smith, PK et al., "Selection of Surgical or Percutaneous Coronary Intervention Provides Differential Longevity Benefit," pp.
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From page 134... ...
. Challenges to Database Use for the Public Good The first challenge to data sharing for the public good is the willingness of data owners to be transparent and enabling.
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From page 135... ...
2003. Use of continuous quality improvement to increase use of process measures in patients undergoing coronary artery bypass graft surgery: A randomized controlled trial.
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From page 136... ...
2004. Validity of the Society of Thoracic Surgeons National Adult Cardiac Surgery Database.
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