Abstract
There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 714-719 |
| Number of pages | 6 |
| Journal | Journal of the American Medical Informatics Association |
| Volume | 21 |
| Issue number | 4 |
| DOIs | |
| State | Published - 2014 |
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ASJC Scopus subject areas
- Health Informatics
Cite this
Data governance requirements for distributed clinical research networks : Triangulating perspectives of diverse stakeholders. / Kim, Katherine K; Browe, Dennis K.; Logan, Holly C.; Holm, Roberta; Hack, Lori; Ohno-Machado, Lucila.
In: Journal of the American Medical Informatics Association, Vol. 21, No. 4, 2014, p. 714-719.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Data governance requirements for distributed clinical research networks
T2 - Triangulating perspectives of diverse stakeholders
AU - Kim, Katherine K
AU - Browe, Dennis K.
AU - Logan, Holly C.
AU - Holm, Roberta
AU - Hack, Lori
AU - Ohno-Machado, Lucila
PY - 2014
Y1 - 2014
N2 - There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.
AB - There is currently limited information on best practices for the development of governance requirements for distributed research networks (DRNs), an emerging model that promotes clinical data reuse and improves timeliness of comparative effectiveness research. Much of the existing information is based on a single type of stakeholder such as researchers or administrators. This paper reports on a triangulated approach to developing DRN data governance requirements based on a combination of policy analysis with experts, interviews with institutional leaders, and patient focus groups. This approach is illustrated with an example from the Scalable National Network for Effectiveness Research, which resulted in 91 requirements. These requirements were analyzed against the Fair Information Practice Principles (FIPPs) and Health Insurance Portability and Accountability Act (HIPAA) protected versus non-protected health information. The requirements addressed all FIPPs, showing how a DRN's technical infrastructure is able to fulfill HIPAA regulations, protect privacy, and provide a trustworthy platform for research.
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UR - http://www.scopus.com/inward/citedby.url?scp=84902359050&partnerID=8YFLogxK
U2 - 10.1136/amiajnl-2013-002308
DO - 10.1136/amiajnl-2013-002308
M3 - Article
C2 - 24302285
AN - SCOPUS:84902359050
VL - 21
SP - 714
EP - 719
JO - Journal of the American Medical Informatics Association : JAMIA
JF - Journal of the American Medical Informatics Association : JAMIA
SN - 1067-5027
IS - 4
ER -