Improving Population Health: Strategies and Actions
POLICIES FOR DATA USE
STRATEGY
1. Clearly characterize, explain and raise awareness of the current laws, rules and regulations governing the use of clinical data for uses other than care delivery (population health purposes).
ACTIONS
1.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Leveraging the work of many organizations, including but not limited to AHIC, AMIA, AQA, Connecting for Health, eHI, NCVHS, WEDI RTI/AHRQ and others, an NGO, in partnership with all healthcare stakeholders, should develop a clear and concise catalog of current federal and state laws, rules, and regulations governing the use of electronic clinical data for non-care delivery purposes, including, for example, awareness of a patient’s right to opt out of HIE. The catalog, to the extent possible, should be converted into a summary guide, with references, that non-lawyers can understand, to assist healthcare stakeholders in effectively complying with such laws, rules and regulations. (2007-2008)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
1.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
All stakeholders in healthcare, including but not limited to providers, consumers, employers and other healthcare purchasers, HIT Vendors, laboratories, pharmacies, pharmaceutical manufacturers, public health, QIOs, research institutions, state and local organizations and Federal Agencies, should widely disseminate the catalog and summary guide to individuals and organizations across every sector of healthcare to raise awareness and support compliance. (2008)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
STRATEGY
2. Gain multi-stakeholder consensus on and widely disseminate a common set of principles and policies for use of clinical data for population health purposes.
ACTIONS
2.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Leveraging the work of many organizations, including but not limited to AHIC, AMIA, AQA, Connecting for Health, eHI, NCVHS, WEDI, and others, an NGO should launch an open, transparent process involving every stakeholder of healthcare, from both the public and private sectors, which creates a set of common principles and policies for the use of electronic clinical data derived from the care delivery process for population health purposes. These principles and policies should, at a minimum, address:
Privacy and consent issues with regard to both identified and de-identified data use for improving population health
Appropriate uses of de-identified, identified and re-identified data
Standard methods to monitor and communicate compliance with the principles and policies to the public (e.g. adherence to a “code of conduct”, etc.). (2008-2009)
STAKEHOLDERS
NGOs
2.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
An NGO working with multiple stakeholders should explore, and clearly articulate in a guide, issues related to de-identification and re-identification of electronic clinical data for population health improvement. The results of this work should inform the principles developed in 2.1. (2008)
STAKEHOLDERS
NGOs
2.3
2007
2008
2009
2010
2011
ONGOING >>
ACTION
As part of the process outlined in 2.1, the NGO should also conduct a study on the financial implications for the use of population health data / aggregated data (this may include policy of who profits from use of data and who pays for data capture and aggregation) (2008-2009). The NGO should also develop recommendations regarding the type of entities that profit from using aggregated population health data and how they should share gains, based on the comprehensive study (2008-2009)
STAKEHOLDERS
NGOs
2.4
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Groups representing every stakeholder of healthcare should widely disseminate and publicly support adherence to the common principles and policies developed through the consensus process. (2008-ongoing)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
2.5
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Organizations engaged in the use of clinical data for population health purposes should publicly disclose adherence to the common principles and policies developed through the consensus process. (2008-ongoing)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
STRATEGY
3. Develop and widely disseminate tools, resources and guides to support healthcare organizations’ use of the common set of principles and policies.
ACTIONS
3.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
NGOs, Provider Organizations, Public Health, Researchers, Pharmaceutical Organizations and other organizations with expertise in using clinical data for population health should develop tools, resources, and guides to support the implementation of the principles and policies for use of clinical data for population health by those organizations engaged in the use of clinical data for population health purposes, including but not limited to standard data use agreements, disclosure statements, public policies, etc. (2008-2010)
STAKEHOLDERS
NGOs
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
3.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
NGOs, Provider Organizations, Public Health, Researchers, Pharmaceutical Organizations and other organizations with expertise in using clinical data for population health should coordinate and collectively identify best practices and create forums for sharing their learning and best practices with their constituencies, to stimulate and support compliance with the common principles and policies. (2008-ongoing)
STAKEHOLDERS
NGOs
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
PRIORITY-SETTING AND COALITION-BUILDING FOR THE USE OF CLINICAL DATA FROM CARE DELIVERY FOR POPULATION HEALTH
STRATEGY
4. Define and prioritize a set of common data elements that are needed for multiple priority population health uses.
ACTIONS
4.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Recognizing that there are many different uses of clinical data for improving population health, yet significant time and resources are necessary to support EHR adoption and HIE implementation, an NGO or a Federal Agency should convene groups who represent the various interests of population health improvement (performance measurement, quality improvement, public health, research, etc.) and develop a “crosswalk” of the data elements needed for priority processes within each population health domain. Common data elements across population health domains (e.g. laboratory test results) should be identified and compiled to assisting with priority-setting for systems implementation, workflow changes, standards needed, and alternative business models for a “one source: multiple use” approach. (2008-2010)
STAKEHOLDERS
NGOs
4.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Organizations representing various stakeholder groups should widely disseminate the results of the priority setting process to federal and state policy makers, the various actors involved in the categories identified above, and every sector of healthcare, to facilitate adoption. (2008-ongoing)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
STRATEGY
5. Document and widely disseminate the benefits and risks of using clinical data for population health purposes, using language that “data sources” such as consumers, clinicians, hospitals and other providers, and laboratories as well as “data users” such as employers, health plans, researchers, and public health agencies, understand.
ACTIONS
5.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Recognizing that many consumers and healthcare organizations do not fully understand the potential benefits of the use of clinical data for population health purposes, a federal agency, research organization, NGO or group of NGOs should document, with references to the evidence, the benefits and risks of using clinical data for population health purposes, in language that is easily understandable by the public. (2008)
STAKEHOLDERS
Federal Agencies
NGOs
Public Health, Researchers, Etc.
5.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Groups representing every stakeholder in healthcare should widely disseminate materials that effectively communicate the benefits and risks of using clinical data for population health purposes. (2008-2009, and ongoing)
STAKEHOLDERS
Congress
Consumer Organizations
Federal Agencies
Health IT Vendors
Health Plans
NGOs
Payers (Employers/Purchasers)
Pharmaceutical Manufacturers
Pharmacy Organizations
Providers/Provider Organizations
Public Health, Researchers, Etc.
Quality Organizations
State and Community HIE Collaboratives
State/Local Government
STRATEGY
6. Define the “users” of data elements for population health uses with sufficient granularity to lay the foundation for changes that will dramatically increase the demand for such data for population health purposes.
ACTIONS
6.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
An NGO or group of NGOs should conduct research and engage the necessary organizations to define, for each common data element, the sources and the users of such data, the specific purposes for use, the costs of current data collection processes, and the gaps in their current methods of data collection. (2008)
STAKEHOLDERS
NGOs
6.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Leveraging the work conducted in strategy #2 and #5, the NGO or set of NGOs should clearly articulate and quantify the benefit and risks associated with transmission of data using methods that protect privacy and confidentiality, to make the case for changes that will accelerate the access of data for population health purposes. (2009)
STAKEHOLDERS
NGOs
STRATEGY
7. Define where the common data elements currently reside with sufficient granularity to lay the foundation for driving changes that will dramatically increase the availability of such data for population health purposes.
ACTIONS
7.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
An entity, which may be a research organization or an NGO, or another organization with expertise, should conduct research and engage the necessary organizations to define, for each common data element, where it originates (e.g. the general source of the data), its storage method (electronic or not electronic), and a breakdown of the different types of sources and their locations (e.g. national laboratories versus local independent laboratories versus hospital laboratories, versus laboratory tests performed in physician offices). (2008)
STAKEHOLDERS
NGOs
Public Health, Researchers, Etc.
7.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
Leveraging the work conducted in strategy #5, clearly articulate and quantify the benefit associated with making data available using methods that protect privacy and confidentiality, to make the case for changes that will accelerate the capture and availability of data for population health purposes. (2008)
STAKEHOLDERS
NGOs
Public Health, Researchers, Etc.
BUILDING SUPPORTS FOR WIDESPREAD IMPLEMENTATION
STRATEGY
8. Define the systems, filtering rules, workflow changes and functionalities needed to support electronic capture of, transmission of and access to the common data elements.
ACTIONS
8.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
For each of the common data elements identified in #4, and utilizing the data collected in #6 and #7, an NGO should identify the systems needed and workflow and process barriers to electronic data capture and data availability, as well as data access and develop strategies to overcome those barriers. (2009)
STAKEHOLDERS
NGOs
8.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
An NGO, or group of NGOs, should clearly articulate, in an easy to understand guide, the systems, the available standards, the workflow changes, functionalities and business process changes needed to facilitate capture of, transmission of, and access to the common data elements. (2009)
STAKEHOLDERS
NGOs
STRATEGY
9. Develop a set of alternative business models that will support the costs of making the data available and access to such data from population health data users.
ACTIONS
9.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
For each of the common data elements, as well as the uses and users of such elements, an NGO should assess, quantify and effectively articulate the value of the data, targeting each population health segment of users (e.g. performance measurement, quality improvement, public health, research, etc.). (2008)
STAKEHOLDERS
NGOs
9.2
2007
2008
2009
2010
2011
ONGOING >>
ACTION
For each population health segment of users or “customers” an NGO or group of NGOs should work closely with organizations representing population health data users to develop a set of detailed business models alternatives to support data capture, data availability and data access. (2008)
STAKEHOLDERS
NGOs
9.3
2007
2008
2009
2010
2011
ONGOING >>
ACTION
An organization should utilize the data created in 9.2 and develop easy to understand guides to support the development of business models for transactions between data sources, health information exchanges and data users. (2009)
STAKEHOLDERS
Consumer Organizations
NGOs
Pharmacy Organizations
Providers/Provider Organizations
Quality Organizations
STRATEGY
10. Define common standards for representing such common data elements.
ACTIONS
10.1
2007
2008
2009
2010
2011
ONGOING >>
ACTION
For each of the common data elements, and leveraging the work of HITSP, CCHIT, HL7 and the other SDOs, IHE, the Collaborative for Performance Measurement Integration and other groups, an NGO or other organization should “crosswalk” the common data elements to the standards that have been harmonized or agreed upon by such recognized parties, and catalog such standards in an easy to understand format. (2008)
