A survey of computable biomedical knowledge repositories
dc.contributor.author | Platt, Jodyn E. | |
dc.contributor.author | Solomonides, Anthony E. | |
dc.contributor.author | Walker, Philip D. | |
dc.contributor.author | Amara, Philip S. | |
dc.contributor.author | Richardson, Joshua E. | |
dc.contributor.author | Middleton, Blackford | |
dc.date.accessioned | 2023-02-01T18:57:07Z | |
dc.date.available | 2024-02-01 13:57:06 | en |
dc.date.available | 2023-02-01T18:57:07Z | |
dc.date.issued | 2023-01 | |
dc.identifier.citation | Platt, Jodyn E.; Solomonides, Anthony E.; Walker, Philip D.; Amara, Philip S.; Richardson, Joshua E.; Middleton, Blackford (2023). "A survey of computable biomedical knowledge repositories." Learning Health Systems 7(1): n/a-n/a. | |
dc.identifier.issn | 2379-6146 | |
dc.identifier.issn | 2379-6146 | |
dc.identifier.uri | https://hdl.handle.net/2027.42/175738 | |
dc.description.abstract | IntroductionWhile data repositories are well-established in clinical and research enterprises, knowledge repositories with shareable computable biomedical knowledge (CBK) are relatively new entities to the digital health ecosystem. Trustworthy knowledge repositories are necessary for learning health systems, but the policies, standards, and practices to promote trustworthy CBK artifacts and methods to share, and safely and effectively use them are not well studiedMethodsWe conducted an online survey of 24 organizations in the United States known to be involved in the development or deployment of CBK. The aim of the survey was to assess the current policies and practices governing these repositories and to identify best practices. Descriptive statistics methods were applied to data from 13 responding organizations, to identify common practices and policies instantiating the TRUST principles of Transparency, Responsibility, User Focus, Sustainability, and TechnologyResultsAll 13 respondents indicated to different degrees adherence to policies that convey TRUST. Transparency is conveyed by having policies pertaining to provenance, credentialed contributors, and provision of metadata. Repositories provide knowledge in machine-readable formats, include implementation guidelines, and adhere to standards to convey Responsibility. Repositories report having Technology functions that enable end-users to verify, search, and filter for knowledge products. Less common TRUST practices are User Focused procedures that enable consumers to know about user licensing requirements or query the use of knowledge artifacts. Related to Sustainability, less than a majority post describe their sustainability plans. Few organizations publicly describe whether patients play any role in their decision-making.ConclusionIt is essential that knowledge repositories identify and apply a baseline set of criteria to lay a robust foundation for their trustworthiness leading to optimum uptake, and safe, reliable, and effective use to promote sharing of CBK. Identifying current practices suggests a set of desiderata for the CBK ecosystem in its continued evolution | |
dc.publisher | University of Michigan Press | |
dc.publisher | Wiley Periodicals, Inc. | |
dc.subject.other | learning health systems | |
dc.subject.other | clinical decision support | |
dc.subject.other | computable biomedical knowledge | |
dc.subject.other | knowledge management | |
dc.subject.other | learning health care | |
dc.title | A survey of computable biomedical knowledge repositories | |
dc.type | Article | |
dc.rights.robots | IndexNoFollow | |
dc.subject.hlbsecondlevel | Biomedical Health Sciences | |
dc.subject.hlbtoplevel | Health Sciences | |
dc.description.peerreviewed | Peer Reviewed | |
dc.description.bitstreamurl | http://deepblue.lib.umich.edu/bitstream/2027.42/175738/1/lrh210314_am.pdf | |
dc.description.bitstreamurl | http://deepblue.lib.umich.edu/bitstream/2027.42/175738/2/lrh210314.pdf | |
dc.identifier.doi | 10.1002/lrh2.10314 | |
dc.identifier.source | Learning Health Systems | |
dc.identifier.citedreference | HL7 Standards Product Brief—Arden Syntax V2.7|HL7 International. https://www.hl7.org/implement/standards/product_brief.cfm?product_id=2. 2021 | |
dc.identifier.citedreference | Swierstra T, Efstathiou S. Knowledge repositories. In digital knowledge we trust. Med Health Care Philos. 2020; 23 ( 4 ): 543 - 547. doi: 10.1007/s11019-020-09978-9 | |
dc.identifier.citedreference | Lin D, Crabtree J, Dillo I, et al. The TRUST principles for digital repositories. Sci Data. 2020; 7: 144 https://www.nature.com/articles/s41597-020-0486-7 | |
dc.identifier.citedreference | Gabrielsen AM. Openness and trust in data-intensive science: the case of biocuration. Med Health Care Philos. 2020; 23 ( 3 ): 497 - 504. doi: 10.1007/s11019-020-09960-5 | |
dc.identifier.citedreference | Burton PR, Murtagh MJ, Boyd A, et al. Data safe havens in health research and healthcare. Bioinformatics. 2015; 31 ( 20 ): 3241 - 3248. doi: 10.1093/bioinformatics/btv279 | |
dc.identifier.citedreference | De Grandis G. Fair trade in building digital knowledge repositories: the knowledge economy as if researchers mattered. Med Health Care Philos. 2020; 23 ( 4 ): 549 - 563. doi: 10.1007/s11019-020-09966-z | |
dc.identifier.citedreference | Yoon A. End users’ trust in data repositories: definition and influences on trust development. Arch Sci. 2014; 14 ( 1 ): 17 - 34. doi: 10.1007/s10502-013-9207-8 | |
dc.identifier.citedreference | Broekstra R, Aris-Meijer J, Maeckelberghe E, Stolk R, Otten S. Trust in centralized large-scale data repository: a qualitative analysis. J Empir Res Hum Res Ethics. 2020; 15 ( 4 ): 365 - 378. doi: 10.1177/1556264619888365 | |
dc.identifier.citedreference | Nydal R, Bennett G, Kuiper M, Lægreid A. Silencing trust: confidence and familiarity in re-engineering knowledge infrastructures. Med Health Care Philos. 2020; 23 ( 3 ): 471 - 484. doi: 10.1007/s11019-020-09957-0 | |
dc.identifier.citedreference | Platt J, Raj M, SLR K. The public’s trust and information brokers in health care, public health and research. J Health Organ Manag. 2019; 33 ( 7/8 ): 929 - 948. doi: 10.1108/JHOM-11-2018-0332/full/html | |
dc.identifier.citedreference | Richardson JE, Middleton B, Platt JE, Blumenfeld BH. Building and maintaining trust in clinical decision support: recommendations from the patient-centered CDS learning network. Learn Health Syst. 2020; 4 ( 2 ): e10208. doi: 10.1002/lrh2.10208 | |
dc.identifier.citedreference | HOME. https://mobilizecbk.med.umich.edu/ | |
dc.identifier.citedreference | TRUST & POLICY. https://mobilizecbk.med.umich.edu/workgroups/trust-policy | |
dc.identifier.citedreference | Ostrom E, Gardner R, Walker J. Rules, Games, and Common-Pool Resources. Ann Arbor, MI: University of Michigan Press; 1994 http://www.press.umich.edu/9739 | |
dc.identifier.citedreference | About the Nagoya Protocol. https://www.cbd.int/abs/about/. 2021 | |
dc.identifier.citedreference | Boxwala AA, Rocha BH, Maviglia S, et al. A multi-layered framework for disseminating knowledge for computer-based decision support. J Am Med Inform Assoc. 2011; 18 ( suppl 1 ): i132 - i139. doi: 10.1136/amiajnl-2011-000334 | |
dc.identifier.citedreference | FHIR Clinical Guidelines (v1.0.0) (STU 1). http://hl7.org/fhir/uv/cpg/. 2021 | |
dc.identifier.citedreference | HL7 Integration Services, HL7 Implementation & Interface Development Solution. https://digitalhealth.folio3.com/hl7-integration-solutions/?gclid=CjwKCAiAv_KMBhAzEiwAs-rX1CxECD3OED1Uj14KslnUDfZ16H17-sRiH9-fBcFXjKUGvlOUYRc1hhoCggoQAvD_BwE. 2021 | |
dc.identifier.citedreference | TRAC Metrics|CRL. https://www.crl.edu/archiving-preservation/digital-archives/metrics-assessing-and-certifying/trac. 2021 | |
dc.identifier.citedreference | Wilkinson MD, Dumontier M, IjJ A, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016 https://www.nature.com/articles/sdata201618; 3 ( 1 ): 160018. | |
dc.identifier.citedreference | OECD. Policy Framework on Sound Public Governance: Baseline Features of Governments that Work Well. Paris: Organisation for Economic Co-operation and Development; 2020 https://www.oecd-ilibrary.org/governance/policy-framework-on-sound-public-governance_c03e01b3-en | |
dc.identifier.citedreference | IEEE. Ethically aligned design: A vision for prioritizing human well-being with autonomous and intelligent systems. Report No.: First Edition Glossary. IEEE. https://standards.ieee.org/wp-content/uploads/import/documents/other/ead1e_glossary.pdf. 2022. | |
dc.identifier.citedreference | OECD. Recommendation of the Council on Artificial Intelligence. https://oecd.ai/en/assets/files/OECD-LEGAL-0449-en.pdf. 2019 | |
dc.identifier.citedreference | Donabedian A. Evaluating the quality of medical care. Milbank Mem Fund Q. 1966; 44 ( 3 ): 166 - 206. | |
dc.identifier.citedreference | 10 Simple Rules with Conformance Rubric|Interagency Modeling and Analysis Group. https://www.imagwiki.nibib.nih.gov/content/10-simple-rules-conformance-rubric. 2021 | |
dc.identifier.citedreference | Core Certified Repositories—CoreTrustSeal. https://www.coretrustseal.org/why-certification/certified-repositories/. 2021 | |
dc.identifier.citedreference | Hardwig J. The role of trust in knowledge. J Philos. 1991 Dec; 88 ( 12 ): 693 http://www.pdcnet.org/oom/service?url_ver=Z39.88-2004&rft_val_fmt=&rft.imuse_id=jphil_1991_0088_0012_0693_0708&svc_id=info:www.pdcnet.org/collection | |
dc.identifier.citedreference | Wright A, Bates DW, Middleton B, et al. Creating and sharing clinical decision support content with Web 2.0: issues and examples. J Biomed Inform. 2009; 42 ( 2 ): 334 - 346. https://linkinghub.elsevier.com/retrieve/pii/S1532046408001251 | |
dc.identifier.citedreference | Burchill C, Roos LL, Fergusson P, Jebamani L, Turner K, Dueck S. Organizing the present, looking to the future: an online knowledge repository to facilitate collaboration. J Med Internet Res. 2000; 2 ( 2 ): e10 http://www.jmir.org/2000/2/e10/ | |
dc.identifier.citedreference | Middleton B, Anderson J, Fletcher J, Masarie FE, Leavitt MK. Use of the WWW for distributed knowledge engineering for an EMR: the KnowledgeBank concept. Proceedings of AMIA Symposium; 1998;126-30. | |
dc.identifier.citedreference | A platform for biomedical discovery and data-powered health: National Library of medicine strategic plan 2017-2027/report of the NLM Board of Regents. Bethesda, MD: U.S. Dept. of Health and Human Services, Public Health Service, National Institutes of Health, National Library of Medicine; (NIH Publication); 2017. p. 39. https://www.nlm.nih.gov/pubs/plan/lrp17/NLM_StrategicReport2017_2027.pdf | |
dc.working.doi | NO | en |
dc.owningcollname | Interdisciplinary and Peer-Reviewed |
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