Difference between revisions of "Data Governance"

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IBM's Data Governance Council defines data governance as “... a quality control discipline for accessing, managing, monitoring, maintaining, and protecting organization information.” <ref name="ibm"></ref>
 
IBM's Data Governance Council defines data governance as “... a quality control discipline for accessing, managing, monitoring, maintaining, and protecting organization information.” <ref name="ibm"></ref>
  
'''Purpose of Data Governance'''
+
----
  
Data Governance provides oversight of a healthcare entity’s data management practices. Its role is to ensure appropriate data quality, data security and data use. In addition, governance activities monitor compliance with regulatory requirements. <ref name=Data governance. Data Governance - SDO Education Playbook. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/ambulatory-guide/data-governance/</ref>
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== '''Purpose of Data Governance''' ==
 +
Data Governance provides oversight of a healthcare entity’s data management practices. Its role is to ensure appropriate data quality, data security and data use. In addition, governance activities monitor compliance with regulatory requirements.<ref name="definition">Data governance. Data Governance - SDO Education Playbook. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/ambulatory-guide/data-governance/</ref> <ref name="EHRRealWorld">John D’Amore, M. S. (2021, September 20). Electronic health record data governance and data quality in the real world. HIMSS. Retrieved October 25, 2021, from https://www.himss.org/resources/electronic-health-record-data-governance-and-data-quality-real-world</ref> The [[American Health Information Management Association (AHIMA)]] defines information governance (IG) as “an organization-wide framework for managing information throughout its lifecycle and supporting the organization’s strategy, operations, regulatory, legal, risk, and environmental requirements.” <ref name="Way forward">Way forward: Ahima develops information governance principles to lead healthcare toward Better Data Management. Journal of AHIMA. (n.d.). Retrieved October 25, 2021, from https://library.ahima.org/doc?oid=107468#.YXYnsBrMLb2</ref> Most larger institutions have a governance committee to discuss and implement policies and procedures that promote best practices for data management and regulatory compliance.  In larger institutions, the governance team may be led by a corporate executive such as the [[Chief Medical Information Officer]](CMIO).  Optimally, the governance committee should include representatives from all areas of the organization in order to provide diverse perspectives. <ref name="EHRImplementation">Group, T. H. C. I. (n.d.). EHR implementation: The who, what, and why of Governance Structures. EHR Implementation: The Who, What, and Why of Governance Structures. Retrieved October 25, 2021, from https://blog.thehcigroup.com/ehr-implementation-the-who-what-and-why-of-governance-structures</ref>
 +
 
 +
----
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 +
== '''Information Governance Principles for Healthcare (IGPHC)''' ==
 +
AHIMA has developed IGPHC as industry “norms, values, and rules used to comprehensively govern an organization’s information management strategy.”  They defined the principles to provide a “framework of IG best practices; a model for program development; a means of benchmarking against peers; and a plan for legislative, judicial, accreditation, and organizational policy mapping.”<ref name="Way forward">Way forward: Ahima develops information governance principles to lead healthcare toward Better Data Management. Journal of AHIMA. (n.d.). Retrieved October 25, 2021, from https://library.ahima.org/doc?oid=107468#.YXYnsBrMLb2</ref> The IGPHC were created to provide flexible guidance regarding management of both clinical and non-clinical data by a wide variety of healthcare entities, including providers, payers, researchers and health information exchanges. The IGPHC are divided into eight distinct guiding principles.
 +
 
 +
==='''1. Accountability'''===
  
8, 11
 
The American Health Information Management Association (AHIMA) defines information governance (IG) as “an organization-wide framework for managing information throughout its lifecycle and supporting the organization’s strategy, operations, regulatory, legal, risk, and environmental requirements.”  17
 
Most larger institutions have a governance committee to discuss and implement policies and procedures that promote best practices for data management and regulatory compliance.  In larger institutions, the governance team may be led by a corporate executive such as the Chief Information Officer (CIO).  Optimally, the governance committee should include representatives from all areas of the organization in order to provide diverse perspectives. 10
 
Information Governance Principles for Healthcare (IGPHC)
 
AHIMA has developed IGPHC as industry “norms, values, and rules used to comprehensively govern an organization’s information management strategy.”  They defined the principles to provide a “framework of IG best practices; a model for program development; a means of benchmarking against peers; and a plan for legislative, judicial, accreditation, and organizational policy mapping.”  The IGPHC were created to provide flexible guidance regarding management of both clinical and non-clinical data by a wide variety of healthcare entities, including providers, payers, researchers and health information exchanges. The IGPHC are divided into eight distinct guiding principles.
 
1. Accountability
 
 
Governance policy should hold staff members accountable for following data management best practices.  The EHR system should have auditing capability.
 
Governance policy should hold staff members accountable for following data management best practices.  The EHR system should have auditing capability.
2. Transparency
+
 
 +
==='''2. Transparency'''===
 +
 
 
All data management operations, policies and procedures should be transparent and verifiable.
 
All data management operations, policies and procedures should be transparent and verifiable.
3. Integrity
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 +
==='''3. Integrity'''===
 +
 
 
External sources should be evaluated for reliability to maintain data integrity.
 
External sources should be evaluated for reliability to maintain data integrity.
  
4. Protection
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==='''4. Protection'''===
 +
 
 
Security measures should be undertaken to protect data against external breaches.
 
Security measures should be undertaken to protect data against external breaches.
  
5. Compliance
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==='''5. Compliance'''===
 +
 
 
Governance policies should comply with all applicable laws and industry regulations and align with the organization’s internal mission and policies.
 
Governance policies should comply with all applicable laws and industry regulations and align with the organization’s internal mission and policies.
6. Availability
+
 
 +
==='''6. Availability'''===
 +
 
 
Measures should be taken to make certain that data is readily accessible to patients and staff when use is required.
 
Measures should be taken to make certain that data is readily accessible to patients and staff when use is required.
7. Retention
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 +
==='''7. Retention'''===
 +
 
 
Organizations should develop policies for retaining and archiving data in accordance with applicable state and federal laws.   
 
Organizations should develop policies for retaining and archiving data in accordance with applicable state and federal laws.   
8. Disposition
 
Provisions should be made for data to be disposed of in a secure manner. 17, 9
 
  
ONC Patient Demographic Data Quality Profile (PDDQ)  
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==='''8. Disposition'''===
The Office of the National Coordinator for Health Information Technology developed the PDDQ Framework and Ambulatory Guidance document in 2015. In the document, ONC provided methods for assessing data governance structure and critiquing data management policies and procedures.  It outlined ways to appraise quality improvement initiatives. The PDDQ document divided data management processes into five main categories.
+
 
1. Data Governance
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Provisions should be made for data to be disposed of in a secure manner. <ref name="Way forward">Way forward: Ahima develops information governance principles to lead healthcare toward Better Data Management. Journal of AHIMA. (n.d.). Retrieved October 25, 2021, from https://library.ahima.org/doc?oid=107468#.YXYnsBrMLb2</ref> <ref name="StrongGovernance">EHRIntelligence. (2017, August 7). How strong health data governance ensures EHR Data Integrity. EHRIntelligence. Retrieved October 25, 2021, from https://ehrintelligence.com/news/how-strong-health-data-governance-ensures-ehr-data-integrity</ref>
o Governance Management
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 +
----
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 +
== '''ONC Patient Demographic Data Quality Profile (PDDQ)''' ==
 +
The [[Office of the National Coordinator for Health Information Technology]] developed the PDDQ Framework and Ambulatory Guidance document in 2015. In the document, ONC provided methods for assessing data governance structure and critiquing data management policies and procedures.  It outlined ways to appraise quality improvement initiatives. The PDDQ document divided data management processes into five main categories.
 +
 
 +
==='''1. Data Governance'''===
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 +
'''Governance Management'''
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A formal data governance structure should exist. Committees and individuals should have defined roles.
 
A formal data governance structure should exist. Committees and individuals should have defined roles.
o Communications
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 +
'''Communications'''
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Data management policies, procedures and best practices should be communicated to all staff members.
 
Data management policies, procedures and best practices should be communicated to all staff members.
o Data Management Function
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 +
'''Data Management Function'''
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There should be a person responsible for oversight of data management and data quality improvement to ensure that best practices are followed.  
 
There should be a person responsible for oversight of data management and data quality improvement to ensure that best practices are followed.  
o Business Glossary, Metadata and Data Standards
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 +
'''Business Glossary, Metadata and Data Standards'''
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The entity should create and maintain a business glossary which defines what data will be gathered and in what format it will be recorded.  An accompanying metadata nomenclature should be established.
 
The entity should create and maintain a business glossary which defines what data will be gathered and in what format it will be recorded.  An accompanying metadata nomenclature should be established.
2. Data Quality
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o Data Quality Planning
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==='''2. Data Quality'''===
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 +
'''Data Quality Planning'''
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The organization should have a plan for monitoring and improving data quality.
 
The organization should have a plan for monitoring and improving data quality.
o Data Profiling
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 +
'''Data Profiling'''
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Organizations should regularly review their data to identify quality issues such as missing data, duplicate charts, and policy delinquencies.  The review can be done manually or accomplished via vendor reports.
 
Organizations should regularly review their data to identify quality issues such as missing data, duplicate charts, and policy delinquencies.  The review can be done manually or accomplished via vendor reports.
o Data Quality Assessment
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 +
'''Data Quality Assessment'''
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Organizations should monitor data quality criteria such as accuracy, completeness, conformity, consistency, timeliness and uniqueness.
 
Organizations should monitor data quality criteria such as accuracy, completeness, conformity, consistency, timeliness and uniqueness.
o Data Cleansing and Improvement
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 +
'''Data Cleansing and Improvement'''
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When data quality issues are identified, data should be cleansed. Changes in data values should be tracked. Processes and workflows should be altered to prevent similar quality issues from occurring in the future.
 
When data quality issues are identified, data should be cleansed. Changes in data values should be tracked. Processes and workflows should be altered to prevent similar quality issues from occurring in the future.
3. Data Operations
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o Data Requirements Definition
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==='''3. Data Operations'''===
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'''Data Requirements Definition'''
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The data requirements should outline the data elements that should be included in the business glossary, as well as the system requirements and metadata standards.
 
The data requirements should outline the data elements that should be included in the business glossary, as well as the system requirements and metadata standards.
o Data Lifecycle Management
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 +
'''Data Lifecycle Management'''
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The data lifecycle documentation should outline the path of data from the time of its creation to the time it is archived. This path may include intersections with outside systems such as lab or radiology records.
 
The data lifecycle documentation should outline the path of data from the time of its creation to the time it is archived. This path may include intersections with outside systems such as lab or radiology records.
o Data Provider Management
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 +
'''Data Provider Management'''
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Requirements for data access should be established for all users, including users external to the organization.
 
Requirements for data access should be established for all users, including users external to the organization.
4. Platform and Standards
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o Data Management Platform
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==='''4. Platform and Standards'''===
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 +
'''Data Management Platform'''
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Entities should define and follow criteria for selecting appropriate databases and data management systems.
 
Entities should define and follow criteria for selecting appropriate databases and data management systems.
o Data Integration
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 +
'''Data Integration'''
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Organizations should establish policies and procedures that ensure that patient records are matched correctly when information is shared across platforms and from external sources.  
 
Organizations should establish policies and procedures that ensure that patient records are matched correctly when information is shared across platforms and from external sources.  
o Historical Data Archiving and Retention
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 +
'''Historical Data Archiving and Retention'''
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Organizations should develop policies for retaining and archiving data. All applicable state and federal laws should be followed.   
 
Organizations should develop policies for retaining and archiving data. All applicable state and federal laws should be followed.   
5. Supporting Processes
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o Measurement and Analysis
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==='''5. Supporting Processes'''===
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 +
'''Measurement and Analysis'''
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Once data issues are identified, quality improvement plans should be developed. Key metrics should be identified and monitored on an ongoing basis to measure progress.
 
Once data issues are identified, quality improvement plans should be developed. Key metrics should be identified and monitored on an ongoing basis to measure progress.
o Process Management
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 +
'''Process Management'''
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Data management policy and procedures should be kept updated and easily accessible to all staff members.  
 
Data management policy and procedures should be kept updated and easily accessible to all staff members.  
  
o Process Quality Assurance
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'''Process Quality Assurance'''
A process should be in place to ensure that quality initiatives are initiated, continued, and assessed. 12
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Topics in Data Governance
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A process should be in place to ensure that quality initiatives are initiated, continued, and assessed.<ref name="PatientDemo">Patient demographic data quality framework. Document. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/pddq-framework/data-governance/</ref>
1. Master Patient Index (EMPI) Database Duplicate Rate
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The EMPI is a database which matches every individual with their own unique set of data within an organizational database.  Duplicate entries compromise data quality and impede information flow. Entities should have standardized workflows and safeguards in place to minimize duplicate records.  Duplicate rate should be routinely monitored as part of data quality assurance. 12, 13, 14
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=='''Data Governance Issues'''==
Copy / Paste Functionality
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==='''1. Enterprise Master Patient Index (EMPI) Database Duplicate Rate'''===
Use of the copy / paste functionality within EHRs is widespread, but should be discouraged.  Copied text can degrade data quality by rapidly propagating data inaccuracies, creating internal data inconsistencies and contributing to note bloat.  Organizations should adopt policies and procedures that minimize copy / paste ability within the EHR. Copied material and its provenance should be made easily identifiable.  Staff should be educated on appropriate use and pitfalls of the copy / paste functionality.  Copy and paste activities should be routinely audited. 9, 15
+
 
 +
The Enterprise [[Master patient index]] is a database which matches every individual with their own unique set of data within an organizational database.  Duplicate entries compromise data quality and impede information flow. Entities should have standardized workflows and safeguards in place to minimize duplicate records.  Duplicate rate should be routinely monitored as part of data quality assurance.<ref name="PatientDemo">Patient demographic data quality framework. Document. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/pddq-framework/data-governance/</ref> <ref name="PtIdentity">Patient identity and patient record matching. HealthIT.gov. (2021, June 15). Retrieved October 25, 2021, from https://www.healthit.gov/topic/patient-identity-and-patient-record-matching</ref> <ref name="WhyPtMatching">PMC, E. (n.d.). Just, Beth Haenke et al. “Why Patient Matching Is a Challenge: Research on Master Patient Index (MPI) Data Discrepancies in Key Identifying Fields.” Perspectives in health information management vol. 13,Spring 1e. 1 Apr. 2016. Europe PMC. Retrieved October 25, 2021, from http://europepmc.org/abstract/MED/26261999</ref>
 +
 
 +
==='''2. Copy and Paste Functionality'''===
 +
 
 +
Use of the [[Copy and paste]] functionality within EHRs is widespread, but should be discouraged.  Copied text can degrade data quality by rapidly propagating data inaccuracies, creating internal data inconsistencies and contributing to note bloat.  Organizations should adopt policies and procedures that minimize copy / paste ability within the EHR. Copied material and its provenance should be made easily identifiable.  Staff should be educated on appropriate use and pitfalls of the copy / paste functionality.  Copy and paste activities should be routinely audited. <ref name="StrongGovernance">EHRIntelligence. (2017, August 7). How strong health data governance ensures EHR Data Integrity. EHRIntelligence. Retrieved October 25, 2021, from https://ehrintelligence.com/news/how-strong-health-data-governance-ensures-ehr-data-integrity</ref> <ref name="SafePractices">Tsou, A., Lehmann, C., Michel, J., Solomon, R., Possanza, L., & Gandhi, T. (2017). Safe practices for copy and paste in the Ehr. Applied Clinical Informatics, 26(01), 12–34. https://doi.org/10.4338/aci-2016-09-r-0150</ref>
 +
 
 
AHIMA has issued the following Position Statement in regards to copy and paste practices:   
 
AHIMA has issued the following Position Statement in regards to copy and paste practices:   
“The use of copy/paste functionality in EHRs should be permitted only in the presence of strong technical and administrative controls which include organizational policies and procedures, requirements for participation in user training and education, and ongoing monitoring.  Users of the copy/paste functionality should weigh the efficiency and time savings benefits it provides against the potential for creating inaccurate, fraudulent, or unwieldy documentation.” 5
+
“The use of copy/paste functionality in EHRs should be permitted only in the presence of strong technical and administrative controls which include organizational policies and procedures, requirements for participation in user training and education, and ongoing monitoring.  Users of the copy/paste functionality should weigh the efficiency and time savings benefits it provides against the potential for creating inaccurate, fraudulent, or unwieldy documentation.” <ref name="appropriateUse">Appropriate use of the copy and paste functionality in ... (n.d.). Retrieved October 25, 2021, from https://bok.ahima.org/PdfView?oid=300306.</ref>
2. Data Provenance
+
 
Data provenance specifies an individual piece of data’s origin, lists any modifications to the data and indicates the source of any modifications. As interoperability increases and data is imported from external sources, including patient generated health data, provenance takes on greater significance. The HL7 FHIR Specification sets standards for data provenance. 4, 9, 16, 20
+
==='''3. Data Provenance'''===
  
3. Patient Generated Health Data (PGHD)
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Data provenance specifies an individual piece of data’s origin, lists any modifications to the data and indicates the source of those modifications.  As interoperability increases and data is imported from external sources, provenance gains greater significance. In addition, the continued growth of [[Patient entered data]] presents unique challenges to provenance tracing. The [[HL7 FHIR]] Specification sets standards for the documentation of data provenance. <ref name="HL7">6.3 resource provenance - content. visit the hl7 website. (n.d.). Retrieved October 25, 2021, from http://www.hl7.org/FHIR/provenance.html.</ref> <ref name="StrongGovernance">EHRIntelligence. (2017, August 7). How strong health data governance ensures EHR Data Integrity. EHRIntelligence. Retrieved October 25, 2021, from https://ehrintelligence.com/news/how-strong-health-data-governance-ensures-ehr-data-integrity</ref> <ref name="Characterizing">Wang, M. D., Khanna, R., & Najafi, N. (2017). Characterizing the source of text in electronic health record progress notes. JAMA Internal Medicine, 177(8), 1212. https://doi.org/10.1001/jamainternmed.2017.1548</ref> <ref name="Implement">Xu, S., Fairweather, E., Rogers, T., & Curcin, V. (2018). Implementing data provenance in health data analytics software. Lecture Notes in Computer Science, 173–176. https://doi.org/10.1007/978-3-319-98379-0_13</ref>
In recent years there has been a proliferation of commercially available personal medical devices that produce large volumes of PGHD.  PGHD poses special data governance challenges. While PGHD provides valuable insight for patient care and promotes shared decision making, it is often difficult and time consuming for providers to extract clinically meaningful information from PGHD. Additional concerns include the lack of mechanisms to ensure the accuracy of remote monitoring devices and the lack of security and privacy oversight of these devices. Security experts worry that interfacing with these devices may result in data breaches when information is transferred to the EHR. 18
+
In response to these concerns, the Veteran’s Administration has published several recommendations for incorporating patient generated data into the electronic health record. They suggest establishing models for the intended use of PGHD. In order to promote physician buy-in, they propose that early PGHD projects should focus on clinical quality measures such as blood glucose monitoring, home blood pressure readings, and depression screening. They recommend creating a taxonomy that is used solely for patient generated data. Their model also includes allotted time for providers to review patient generated data. The VA authors acknowledge that the field of PGHD is rapidly changing and state that “decision makers must balance enterprise requirements that determine what data are defined as PGD and how they are used, with guidance by clinical stakeholders on best practices to address and review PGD. Such practices are likely to change over time as healthcare systems gain experience with and accrue evidence on the impact of PGD on patient care.” 19
+
ONC has also published guidance for managing PGHD. In their whitepaper, they encourage organizations to explore innovative ways to summarize and utilize PGHD. They cite the need for further research into the optimal use of PGHD. They urge policymakers to tighten privacy and security regulations governing devices that produce PGHD and compel developers to voluntarily improve security measures. Finally, they state that payers should reimburse clinicians for the time spent reviewing PGHD. 8
+
  
 +
==='''4. Patient Generated Health Data (PGHD)'''===
  
4. 6.3 resource provenance - content. visit the hl7 website. (n.d.). Retrieved October 25, 2021, from http://www.hl7.org/FHIR/provenance.html.
+
In recent years there has been a proliferation of commercially available personal medical devices that produce large volumes of PGHD. PGHD poses special data governance challenges. While PGHD provides valuable insight for patient care and promotes shared decision making, it is often difficult and time consuming for providers to extract clinically meaningful information from PGHD. Additional concerns include the lack of mechanisms to ensure the accuracy of remote monitoring devices and the lack of security and privacy oversight of these devices. Security experts worry that interfacing with these devices may result in data breaches when information is transferred to the EHR.<ref name="Harmonizing">Winter, J., & Davidson, E. J. (2020). Harmonizing regulatory spheres to overcome challenges for governance of patient-generated health data in the age of Artificial Intelligence and big data. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.3749529</ref>
5. Appropriate use of the copy and paste functionality in ... (n.d.). Retrieved October 25, 2021, from https://bok.ahima.org/PdfView?oid=300306.
+
6. Collins, S. A., Gesner, E., Morgan, S., Mar, P., Maviglia, S., Colburn, D., Tierney, D., & Rocha, R. (2015). A Practical Approach to Governance and Optimization of Structured Data Elements. Stud Health Technol Inform., 216, 7–11.
+
7. Conceptualizing a data infrastructure for the capture, use ... (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper.pdf.
+
8. Data governance. Data Governance - SDO Education Playbook. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/ambulatory-guide/data-governance/.
+
9. EHRIntelligence. (2017, August 7). How strong health data governance ensures EHR Data Integrity. EHRIntelligence. Retrieved October 25, 2021, from https://ehrintelligence.com/news/how-strong-health-data-governance-ensures-ehr-data-integrity.
+
10. Group, T. H. C. I. (n.d.). EHR implementation: The who, what, and why of Governance Structures. EHR Implementation: The Who, What, and Why of Governance Structures. Retrieved October 25, 2021, from https://blog.thehcigroup.com/ehr-implementation-the-who-what-and-why-of-governance-structures.
+
11. John D’Amore, M. S. (2021, September 20). Electronic health record data governance and data quality in the real world. HIMSS. Retrieved October 25, 2021, from https://www.himss.org/resources/electronic-health-record-data-governance-and-data-quality-real-world.  
+
12. Patient demographic data quality framework. Document. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/pddq-framework/data-governance/.
+
13. Patient identity and patient record matching. HealthIT.gov. (2021, June 15). Retrieved October 25, 2021, from https://www.healthit.gov/topic/patient-identity-and-patient-record-matching.
+
14. PMC, E. (n.d.). Just, Beth Haenke et al. “Why Patient Matching Is a Challenge: Research on Master Patient Index (MPI) Data Discrepancies in Key Identifying Fields.” Perspectives in health information management vol. 13,Spring 1e. 1 Apr. 2016. Europe PMC. Retrieved October 25, 2021, from http://europepmc.org/abstract/MED/26261999.
+
15. Tsou, A., Lehmann, C., Michel, J., Solomon, R., Possanza, L., & Gandhi, T. (2017). Safe practices for copy and paste in the Ehr. Applied Clinical Informatics, 26(01), 12–34. https://doi.org/10.4338/aci-2016-09-r-0150
+
16. Wang, M. D., Khanna, R., & Najafi, N. (2017). Characterizing the source of text in electronic health record progress notes. JAMA Internal Medicine, 177(8), 1212. https://doi.org/10.1001/jamainternmed.2017.1548
+
17. Way forward: Ahima develops information governance principles to lead healthcare toward Better Data Management. Journal of AHIMA. (n.d.). Retrieved October 25, 2021, from https://library.ahima.org/doc?oid=107468#.YXYnsBrMLb2.
+
18. Winter, J., & Davidson, E. J. (2020). Harmonizing regulatory spheres to overcome challenges for governance of patient-generated health data in the age of Artificial Intelligence and big data. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.3749529  
+
19. Woods, S. S., Evans, N. C., & Frisbee, K. L. (2016). Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs Design Recommendations for patient-generated data applications. Journal of the American Medical Informatics Association, 23(3), 491–495. https://doi.org/10.1093/jamia/ocv199
+
20. Xu, S., Fairweather, E., Rogers, T., & Curcin, V. (2018). Implementing data provenance in health data analytics software. Lecture Notes in Computer Science, 173–176. https://doi.org/10.1007/978-3-319-98379-0_13
+
  
 +
In response to these concerns, the Veteran’s Administration has published several recommendations for incorporating patient generated data into the electronic health record. They suggest establishing models for the intended use of PGHD. In order to promote physician buy-in, they propose that early PGHD projects should focus on clinical quality measures such as blood glucose monitoring, home blood pressure readings, and depression screening. They recommend creating a taxonomy that is used solely for patient generated data.  Their model also includes allotted time for providers to review patient generated data. The VA authors acknowledge that the field of PGHD is rapidly changing and state that “decision makers must balance enterprise requirements that determine what data are defined as PGD and how they are used, with guidance by clinical stakeholders on best practices to address and review PGD. Such practices are likely to change over time as healthcare systems gain experience with and accrue evidence on the impact of PGD on patient care.” <ref name="IntegratingPatientVoices">Woods, S. S., Evans, N. C., & Frisbee, K. L. (2016). Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs Design Recommendations for patient-generated data applications. Journal of the American Medical Informatics Association, 23(3), 491–495. https://doi.org/10.1093/jamia/ocv199</ref>
  
 +
[[ONC]] has also published guidance for managing PGHD.  In their whitepaper, they encourage organizations to explore innovative ways to summarize and utilize PGHD. They cite the need for further research into the optimal use of PGHD.  They urge policymakers to tighten privacy and security regulations governing devices that produce PGHD and compel developers to voluntarily improve security measures. Finally, they state that payers should reimburse clinicians for the time spent reviewing PGHD. <ref name="Conceptualizing">Conceptualizing a data infrastructure for the capture, use ... (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper.pdf</ref>
  
 +
--[[User:Komalia|Komalia]] ([[User talk:Komalia|talk]]) 01:28, 26 October 2021 (UTC)
  
==References ==
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=='''References'''==
 
<references/>
 
<references/>
  
 
[[Category: Interface, Usability and Accessibility]]
 
[[Category: Interface, Usability and Accessibility]]

Revision as of 01:28, 26 October 2021

Data governance is an emerging quality control discipline for managing data integrity, quality, and access in data-driven environments. While no consensus framework yet exists, data governance oversight committees are a frequently cited strategy to monitor enterprise data in healthcare and biomedical research. Furthermore, data governance relates to privacy, confidentiality and security by overseeing policies, practices and controls used by an organization to mitigate risk and protect patient health information. [1]

Provided below are three frequently cited definitions of data governance:

The Data Governance Institute defines data governance as “...a system of decision rights and accountabilities for information-related processes, executed according to agreed upon models which describe who can take what actions with what information, and when, under what circumstances, using what methods." [2]

The Master Data Management Institute defines data governance as "...the formal orchestration of people, process, and technology to enable an organization to leverage data as an enterprise asset." [3]

IBM's Data Governance Council defines data governance as “... a quality control discipline for accessing, managing, monitoring, maintaining, and protecting organization information.” [1]


Purpose of Data Governance

Data Governance provides oversight of a healthcare entity’s data management practices. Its role is to ensure appropriate data quality, data security and data use. In addition, governance activities monitor compliance with regulatory requirements.[2] [4] The American Health Information Management Association (AHIMA) defines information governance (IG) as “an organization-wide framework for managing information throughout its lifecycle and supporting the organization’s strategy, operations, regulatory, legal, risk, and environmental requirements.” [5] Most larger institutions have a governance committee to discuss and implement policies and procedures that promote best practices for data management and regulatory compliance. In larger institutions, the governance team may be led by a corporate executive such as the Chief Medical Information Officer(CMIO). Optimally, the governance committee should include representatives from all areas of the organization in order to provide diverse perspectives. [6]


Information Governance Principles for Healthcare (IGPHC)

AHIMA has developed IGPHC as industry “norms, values, and rules used to comprehensively govern an organization’s information management strategy.” They defined the principles to provide a “framework of IG best practices; a model for program development; a means of benchmarking against peers; and a plan for legislative, judicial, accreditation, and organizational policy mapping.”[5] The IGPHC were created to provide flexible guidance regarding management of both clinical and non-clinical data by a wide variety of healthcare entities, including providers, payers, researchers and health information exchanges. The IGPHC are divided into eight distinct guiding principles.

1. Accountability

Governance policy should hold staff members accountable for following data management best practices. The EHR system should have auditing capability.

2. Transparency

All data management operations, policies and procedures should be transparent and verifiable.

3. Integrity

External sources should be evaluated for reliability to maintain data integrity.

4. Protection

Security measures should be undertaken to protect data against external breaches.

5. Compliance

Governance policies should comply with all applicable laws and industry regulations and align with the organization’s internal mission and policies.

6. Availability

Measures should be taken to make certain that data is readily accessible to patients and staff when use is required.

7. Retention

Organizations should develop policies for retaining and archiving data in accordance with applicable state and federal laws.

8. Disposition

Provisions should be made for data to be disposed of in a secure manner. [5] [7]


ONC Patient Demographic Data Quality Profile (PDDQ)

The Office of the National Coordinator for Health Information Technology developed the PDDQ Framework and Ambulatory Guidance document in 2015. In the document, ONC provided methods for assessing data governance structure and critiquing data management policies and procedures. It outlined ways to appraise quality improvement initiatives. The PDDQ document divided data management processes into five main categories.

1. Data Governance

Governance Management

A formal data governance structure should exist. Committees and individuals should have defined roles.

Communications

Data management policies, procedures and best practices should be communicated to all staff members.

Data Management Function

There should be a person responsible for oversight of data management and data quality improvement to ensure that best practices are followed.

Business Glossary, Metadata and Data Standards

The entity should create and maintain a business glossary which defines what data will be gathered and in what format it will be recorded. An accompanying metadata nomenclature should be established.

2. Data Quality

Data Quality Planning

The organization should have a plan for monitoring and improving data quality.

Data Profiling

Organizations should regularly review their data to identify quality issues such as missing data, duplicate charts, and policy delinquencies. The review can be done manually or accomplished via vendor reports.

Data Quality Assessment

Organizations should monitor data quality criteria such as accuracy, completeness, conformity, consistency, timeliness and uniqueness.

Data Cleansing and Improvement

When data quality issues are identified, data should be cleansed. Changes in data values should be tracked. Processes and workflows should be altered to prevent similar quality issues from occurring in the future.

3. Data Operations

Data Requirements Definition

The data requirements should outline the data elements that should be included in the business glossary, as well as the system requirements and metadata standards.

Data Lifecycle Management

The data lifecycle documentation should outline the path of data from the time of its creation to the time it is archived. This path may include intersections with outside systems such as lab or radiology records.

Data Provider Management

Requirements for data access should be established for all users, including users external to the organization.

4. Platform and Standards

Data Management Platform

Entities should define and follow criteria for selecting appropriate databases and data management systems.

Data Integration

Organizations should establish policies and procedures that ensure that patient records are matched correctly when information is shared across platforms and from external sources.

Historical Data Archiving and Retention

Organizations should develop policies for retaining and archiving data. All applicable state and federal laws should be followed.

5. Supporting Processes

Measurement and Analysis

Once data issues are identified, quality improvement plans should be developed. Key metrics should be identified and monitored on an ongoing basis to measure progress.

Process Management

Data management policy and procedures should be kept updated and easily accessible to all staff members.

Process Quality Assurance

A process should be in place to ensure that quality initiatives are initiated, continued, and assessed.[8]

Data Governance Issues

1. Enterprise Master Patient Index (EMPI) Database Duplicate Rate

The Enterprise Master patient index is a database which matches every individual with their own unique set of data within an organizational database. Duplicate entries compromise data quality and impede information flow. Entities should have standardized workflows and safeguards in place to minimize duplicate records. Duplicate rate should be routinely monitored as part of data quality assurance.[8] [9] [10]

2. Copy and Paste Functionality

Use of the Copy and paste functionality within EHRs is widespread, but should be discouraged. Copied text can degrade data quality by rapidly propagating data inaccuracies, creating internal data inconsistencies and contributing to note bloat. Organizations should adopt policies and procedures that minimize copy / paste ability within the EHR. Copied material and its provenance should be made easily identifiable. Staff should be educated on appropriate use and pitfalls of the copy / paste functionality. Copy and paste activities should be routinely audited. [7] [11]

AHIMA has issued the following Position Statement in regards to copy and paste practices: “The use of copy/paste functionality in EHRs should be permitted only in the presence of strong technical and administrative controls which include organizational policies and procedures, requirements for participation in user training and education, and ongoing monitoring. Users of the copy/paste functionality should weigh the efficiency and time savings benefits it provides against the potential for creating inaccurate, fraudulent, or unwieldy documentation.” [12]

3. Data Provenance

Data provenance specifies an individual piece of data’s origin, lists any modifications to the data and indicates the source of those modifications. As interoperability increases and data is imported from external sources, provenance gains greater significance. In addition, the continued growth of Patient entered data presents unique challenges to provenance tracing. The HL7 FHIR Specification sets standards for the documentation of data provenance. [13] [7] [14] [15]

4. Patient Generated Health Data (PGHD)

In recent years there has been a proliferation of commercially available personal medical devices that produce large volumes of PGHD. PGHD poses special data governance challenges. While PGHD provides valuable insight for patient care and promotes shared decision making, it is often difficult and time consuming for providers to extract clinically meaningful information from PGHD. Additional concerns include the lack of mechanisms to ensure the accuracy of remote monitoring devices and the lack of security and privacy oversight of these devices. Security experts worry that interfacing with these devices may result in data breaches when information is transferred to the EHR.[16]

In response to these concerns, the Veteran’s Administration has published several recommendations for incorporating patient generated data into the electronic health record. They suggest establishing models for the intended use of PGHD. In order to promote physician buy-in, they propose that early PGHD projects should focus on clinical quality measures such as blood glucose monitoring, home blood pressure readings, and depression screening. They recommend creating a taxonomy that is used solely for patient generated data. Their model also includes allotted time for providers to review patient generated data. The VA authors acknowledge that the field of PGHD is rapidly changing and state that “decision makers must balance enterprise requirements that determine what data are defined as PGD and how they are used, with guidance by clinical stakeholders on best practices to address and review PGD. Such practices are likely to change over time as healthcare systems gain experience with and accrue evidence on the impact of PGD on patient care.” [17]

ONC has also published guidance for managing PGHD. In their whitepaper, they encourage organizations to explore innovative ways to summarize and utilize PGHD. They cite the need for further research into the optimal use of PGHD. They urge policymakers to tighten privacy and security regulations governing devices that produce PGHD and compel developers to voluntarily improve security measures. Finally, they state that payers should reimburse clinicians for the time spent reviewing PGHD. [18]

--Komalia (talk) 01:28, 26 October 2021 (UTC)

References

  1. 1.0 1.1 International Business Machines IBM. The IBM data governance blueprint: Leveraging best practices and proven technologies. http://www-935.ibm.com/services/us/cio/pdf/data-governance-best-practices.pdf
  2. 2.0 2.1 Data Governance Institute. Definition of Data Governance. http://www.datagovernance.com/adg_data_governance_definition/
  3. Master Data Management (MDM) Institute. MDM and Data Governance: Readiness Assessment. http://tcdii.com/PDF/A%20Summary%20Practical%20Guide%20to%20Systems%20Integrators%20&%20Consultancies%20for%20MDM%20&%20DG.pdf
  4. John D’Amore, M. S. (2021, September 20). Electronic health record data governance and data quality in the real world. HIMSS. Retrieved October 25, 2021, from https://www.himss.org/resources/electronic-health-record-data-governance-and-data-quality-real-world
  5. 5.0 5.1 5.2 Way forward: Ahima develops information governance principles to lead healthcare toward Better Data Management. Journal of AHIMA. (n.d.). Retrieved October 25, 2021, from https://library.ahima.org/doc?oid=107468#.YXYnsBrMLb2
  6. Group, T. H. C. I. (n.d.). EHR implementation: The who, what, and why of Governance Structures. EHR Implementation: The Who, What, and Why of Governance Structures. Retrieved October 25, 2021, from https://blog.thehcigroup.com/ehr-implementation-the-who-what-and-why-of-governance-structures
  7. 7.0 7.1 7.2 EHRIntelligence. (2017, August 7). How strong health data governance ensures EHR Data Integrity. EHRIntelligence. Retrieved October 25, 2021, from https://ehrintelligence.com/news/how-strong-health-data-governance-ensures-ehr-data-integrity
  8. 8.0 8.1 Patient demographic data quality framework. Document. (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/playbook/pddq-framework/data-governance/
  9. Patient identity and patient record matching. HealthIT.gov. (2021, June 15). Retrieved October 25, 2021, from https://www.healthit.gov/topic/patient-identity-and-patient-record-matching
  10. PMC, E. (n.d.). Just, Beth Haenke et al. “Why Patient Matching Is a Challenge: Research on Master Patient Index (MPI) Data Discrepancies in Key Identifying Fields.” Perspectives in health information management vol. 13,Spring 1e. 1 Apr. 2016. Europe PMC. Retrieved October 25, 2021, from http://europepmc.org/abstract/MED/26261999
  11. Tsou, A., Lehmann, C., Michel, J., Solomon, R., Possanza, L., & Gandhi, T. (2017). Safe practices for copy and paste in the Ehr. Applied Clinical Informatics, 26(01), 12–34. https://doi.org/10.4338/aci-2016-09-r-0150
  12. Appropriate use of the copy and paste functionality in ... (n.d.). Retrieved October 25, 2021, from https://bok.ahima.org/PdfView?oid=300306.
  13. 6.3 resource provenance - content. visit the hl7 website. (n.d.). Retrieved October 25, 2021, from http://www.hl7.org/FHIR/provenance.html.
  14. Wang, M. D., Khanna, R., & Najafi, N. (2017). Characterizing the source of text in electronic health record progress notes. JAMA Internal Medicine, 177(8), 1212. https://doi.org/10.1001/jamainternmed.2017.1548
  15. Xu, S., Fairweather, E., Rogers, T., & Curcin, V. (2018). Implementing data provenance in health data analytics software. Lecture Notes in Computer Science, 173–176. https://doi.org/10.1007/978-3-319-98379-0_13
  16. Winter, J., & Davidson, E. J. (2020). Harmonizing regulatory spheres to overcome challenges for governance of patient-generated health data in the age of Artificial Intelligence and big data. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.3749529
  17. Woods, S. S., Evans, N. C., & Frisbee, K. L. (2016). Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs Design Recommendations for patient-generated data applications. Journal of the American Medical Informatics Association, 23(3), 491–495. https://doi.org/10.1093/jamia/ocv199
  18. Conceptualizing a data infrastructure for the capture, use ... (n.d.). Retrieved October 25, 2021, from https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper.pdf