Key Elements: Improving Population Health

Data Sharing and Aggregation Workgroup ? Subcommittee on HIT

A subgroup formed to discuss how best to align and apply modern health information technology with the mission and goals of the AQA, namely: the collaborative processes... [and]... strategy for measuring performance at the physician level; collecting and aggregating data in the least burdensome way; and reporting meaningful information to consumers, physicians and other stakeholders to inform choices and improve outcomes.

Principles for HIT and Measurement Aggregation:

• System design, implementation, and use should minimize costs to consumers, physicians? practices, health plans, and data aggregators.
  
• Open networks, standards, and protocols should be promoted to ensure that compatibility, connectivity, and interoperability characterize the systems used for physician or group level quality and performance measurement.
  
• Security and the protection of the privacy of personal health information are imperative.
  
• Software applications for care management (e.g. EHRs, practice management systems, registries) should make standardized quality, performance, and efficiency measurement a routine by-product of their use.
  
• Software applications for care management (e.g., EHRs, practice management systems, registries) should be designed to enable the merger of their data with others for the purpose of facilitating quality improvement efforts or the production of standardized quality, performance and efficiency measurement.

National Health Data Stewardship Entity

Proposed Mission:

• To set uniform operating rules and standards for sharing and aggregating public and private sector data on measures of quality and efficiency.
  
• Offer guidance on implementation of such national operating rules and standards.
  
• Provide a framework for collecting, aggregating and analyzing data, to afford means of more effective oversight of health care data analyses and reporting in the United States.

The scope of work shall include setting policies, rules and standards for:

• Data aggregation
  
• Data collection (includes identification of data sources)
  
• Attribution
  
• Methodologies
  
• Data analysis
  
• Data validation (audits)
  
• Uses of data
  
• Data access
  
• Data sharing and reporting

Population Health and Clinical Care Connections Workgroup

Specific Charge:
Make recommendations to the Community so that within one year, essential ambulatory care and emergency department visit, utilization, and lab result data from electronically enabled health care delivery and public health systems can be transmitted in standardized and anonymized format to authorized public health agencies within 24 hours.

Guiding Principles:

• Utilize the conceptual framework of Confidential Morbidity Report form
  
• Local and/or state jurisdictions will receive fully identifiable data based on current state regulations for notifiable conditions
  
• The focus of the workgroup is limited to hospital/provider reporting to local and/or state health department dependent of the organizational structure of the public health jurisdiction
  
• The focus of the workgroup does not include secondary case reporting
  
• The minimum set of data elements are intended to be universally applicable to various public health data streams for electronic case reporting needs
  
• The template used to categorize data elements traditionally found in confidential morbidity report forms is based on the current structure of case and investigation report forms developed and in circulation by local, state, and federal public health programs.
  
• Common data elements and associated standardized vocabulary should apply to all forms of reporting (e.g., paper submission, web form entry, and direct extractions from EHRs).
  

A National Framework for the Secondary Use of Health Data

Data Stewardship Principles:

• Accountability (including governance, oversight, and the extent and level of applicable regulations)
  
• Openness and transparency (including structure, processing and delivery of data, and business processes and practices)
  
• Notice to patients
  
• Privacy and security (including data quality, de-identification and costs of re-identification)
  
• Granularity of patient consent
  
• Permitted uses and disclosures (including data aggregation and analyses)
  
• Enforcement and remedies
  

National Electronic Disease Surveillance System (NEDSS)

A primary goal of NEDSS is the ongoing, automatic capture and analysis of data that are already available electronically in order to design and implement seamless surveillance and information systems.

Based on the following principles:

• Utilization of industry standards
  
• Reliance on off-the-shelf software
  
• Internet-based secure transmission of data
  
• A common ?look and feel? of systems
  
• Common reporting requirements
  
• No requirement to use specific software

National Healthcare Safety Network (NHSN)

A knowledge system for accumulating, exchanging and integrating relevant information on infectious and noninfectious adverse events associated with healthcare delivery.

Purposes of NHSN:

• Collect data from a sample of healthcare facilities in the United States to permit valid estimation of the magnitude of adverse events among patients and healthcare personnel.
  
• Collect data from a sample of healthcare facilities in the United States to permit valid estimation of the adherence to practices known to be associated with prevention of healthcare-associated infections (HAI).
  
• Analyze and report collected data to permit recognition of trends.
  
• Provide facilities with risk-adjusted data that can be used for interfacility comparisons and local quality improvement activities.
  
• Assist facilities in developing surveillance and analysis methods that permit timely recognition of patient and healthcare personnel safety problems and prompt intervention with appropriate measures.
  
• Conduct collaborative research studies with NHSN member facilities

Public Health Information Network (PHIN)

To improve the capacity of public health to use and exchange information electronically by promoting the use of standards, defining functional and technical requirements.

CDC?s role in PHIN is:

• Supporting the exchange of critical health information between all levels of public health and healthcare,
  
• Developing and promulgating requirements, standards, specifications, and an overall architecture in a collaborative, transparent, and dynamic way,
  
• Monitoring the capability of state and local health departments to exchange information,
  
• Advancing supportive policy,
  
• Providing technical assistance to allow state and local health departments to be full and facilitating a network of active, engaged participants active PHIN participants, and
  
• Facilitating communication and information sharing within the PHIN community.

The Common Framework: Architecture for Privacy in a Networked Health Environment

The Architecture for Privacy promotes a new health network that takes into account the potential for privacy violations, and one which builds privacy and information security into its architecture from the outset, not as an afterthought.

Privacy protection principles:

1. Openness and transparency
   
2. Purpose specification and minimization
   
3. Collection limitation
   
4. Use limitation
   
5. Individual participation and control
   
6. Data integrity and quality
   
7. Security safeguards and controls
   
8. Accountability and oversight
   
9. Legal and financial remedies
   

Connecting for Health RFI regarding a national data stewardship entity

First Principles for Population-Level Data Analysis and Decision-making:

• Designed for Decisions: A 21st century health information environment will focus on improving the decision-making ability of the many actors in the health sector.
  
• Designed for Many: A 21st century health information environment should empower a rich variety of users.
  
• Shaped by Public Policy Goals and Values: A 21st century health information environment should achieve society?s goals and values
  
• Boldly Led, Broadly Implemented: A 21st century health information environment should be guided both by bold leadership and strong user participation.
  
• Possible, Responsive and Effective: 21st century health information environment should grow through realistic steps.
  
• Distributed but Queriable: A 21st century health information environment should be comprised of a large network of distributed data sources.
  
• Trusted through Safeguards and Transparency: A 21st century health information environment should earn and keep the trust of the public through policies that provide safeguards and transparency.
  
• Layers of Protection: The 21st century health information environment should protect patient confidentiality by emphasizing the easy movement of queries and responses, rather than of raw data.
  
• Accountability and Enforcement of Good Network Citizenship: A 21st century health information environment should encourage and enforce good network citizenship by all participants.

Connecting for Health RFI regarding a national data stewardship entity

First Principles for Population-Level Data Analysis and Decision-making:

• Designed for Decisions: A 21st century health information environment will focus on improving the decision-making ability of the many actors in the health sector.
  
• Designed for Many: A 21st century health information environment should empower a rich variety of users.
  
• Shaped by Public Policy Goals and Values: A 21st century health information environment should achieve society?s goals and values
  
• Boldly Led, Broadly Implemented: A 21st century health information environment should be guided both by bold leadership and strong user participation.
  
• Possible, Responsive and Effective: 21st century health information environment should grow through realistic steps.
  
• Distributed but Queriable: A 21st century health information environment should be comprised of a large network of distributed data sources.
  
• Trusted through Safeguards and Transparency: A 21st century health information environment should earn and keep the trust of the public through policies that provide safeguards and transparency.
  
• Layers of Protection: The 21st century health information environment should protect patient confidentiality by emphasizing the easy movement of queries and responses, rather than of raw data.
  
• Accountability and Enforcement of Good Network Citizenship: A 21st century health information environment should encourage and enforce good network citizenship by all participants.

National Committee on Vital and Health Statistics ad Hoc Work Group for Secondary Uses of Health Data

Commissioned by the U.S. Department of Health and Human Services and the Office of the National Coordinator to develop an overall conceptual and policy framework that addresses secondary uses of health information including a taxonomy and definition of terms as well as develop recommendations to HHS on needs for additional policy, guidance, regulation and/or public education related to expanded uses of health data in the context of the developing nationwide health information network with, an emphasis on the uses of the data for quality improvement, quality measurement and reporting.

Secondary Uses Service (SUS)

Primary benefits of SUS:

• Consistency of data collection and analysis across the country
  
• Comprehensive coverage of data collection
  
• Cohesion of information collection enabling the linkage of patient data across primary, community and acute care settings
  
• Timeliness of data which, in time, would be collated directly from local sources
  
• A secure environment where patient confidentiality is maintained
  
• Increased ability for sharing (of aggregated data) for comparative purposes
  
• Common approach to derivation of data
  

Principles for SUS:

• There is one national approach to the SUS;
  
• User access is managed through the security and confidentiality facilities embedded within NHS CRS;
  
• Information provided through the SUS will be anonymised or pseudonymised to remove information that could be used to identify individuals but still allow cases to be tracked and linked for research;
  
• Data will, where possible, be collected or derived from clinical systems as a by-product of direct care;
  
• SUS will include the tools and services for an effective and secure working environment for analysis and reporting.

Patient-Reported Outcomes Measurement Information System (PROMIS)

An initiative that aims to revolutionize the way patient-reported outcome tools are selected and employed in clinical research and practice evaluation. It will also establish a national resource for accurate and efficient measurement of patient-reported symptoms and other health outcomes in clinical practice.

Specific Research Objectives:

• Develop a core set of questions
  
• Develop common metrics
  
• Create item banks using modern measurement theory
  
• Develop computer-adapted tests
  
• Create a Web-based, user-friendly repository
  
• Plan to maximize acceptance
  
• Conduct feasibility studies
  
• Plan for a public-private partnership