20091005 consumer preferences draft requirements document
TRANSCRIPT
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U.S.DepartmentofHealthandHumanServicesOfficeoftheNationalCoordinatorforHealthInformationTechnology
ConsumerPreferencesDraftRequirementsDocument
October5,2009
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Table of Contents1.0 Preface........................................................................................ 3
1.1 Approach ..................................................................................................................... 31.2 Document Overview ......................................................................................................... 31.3 Requirements Document Review Guidance ................................................................................ 5
2.0 Introduction .................................................................................. 62.1 Progress to Date.............................................................................................................. 72.2 Scope ......................................................................................................................... 9
3.0 Consumer Preferences Stakeholders ...................................................... 114.0 Issues and Policy Implications ............................................................ 12
4.1 Consumer Participation .....................................................................................................12 4.2 Consumer Education........................................................................................................12 4.3 Access, Control and Disclosure ............................................................................................12 4.4 Segmentation of Health Information .......................................................................................13 4.5 Liability and Accountability ................................................................................................14
5.0 Perspectives & Scenarios .................................................................. 155.1 Perspectives/Roles: .........................................................................................................15 5.2 Scenarios ....................................................................................................................15
6.0 Process Diagrams ..................................................................... 166.1
Scenario 1: Creation of a Preference .......................................................................................16
6.2 Events and Actions for Scenario 1: Creation of a Preference .............................................................17 6.3 Scenario 2: Preference Management .......................................................................................22 6.4 Events and Actions: Scenario 2 Management and Exchange of Preferences .............................................23
7.0 Information Exchanges .................................................................... 317.1 Legend.......................................................................................................................32
8.0 Functional Needs........................................................................... 338.1 Universal Functional Needs ................................................................................................33 8.2 Consumer Functional Needs................................................................................................33 8.3 Primary/Secondary Receiving Organization Functional Needs ...........................................................34
9.0 Data Set Considerations ................................................................... 369.1 Identity and Preference Verification .......................................................................................36 9.2 Data Classification ..........................................................................................................36
10.0 Appendix A: Glossary ..................................................................... 39
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1.0 Preface1.1 Approach
Recognizing that the creation and exchange of consumer preferences is a highly sensitive
and complex topic, the Office of Interoperability and Standards (OIS) has amended itsapproach to developing the Requirements Document (formerly known as a Use Case) to
ensure a more coordinated and collaborative process between requirements development
and standards harmonization. This updated approach includes gaining input from a greater
number of stakeholders and greater collaboration across Office of the National Coordinator
for Health Information Technology (ONC), the Healthcare Information Technology Standards
Panel (HITSP) and the Nationwide Health Information Network (NHIN) for developing the
requirements that may inform future development of certification criteria, including those
for electronic health records (EHRs) and health information exchange (HIE).
Policies surrounding consumer preferences are expected to evolve over time. This
document will enable standards development organizations to harmonize standards in a
manner that will accommodate potential future policy decision outcomes. This
Requirements Document is designed to be forward thinking and highlights both a
progressive current and future state scenario that is supported by electronic systems.
1.2 DocumentOverviewOIS has refined the development process and format of the Requirements Document, to
improve the facilitation of the standards development and harmonization process. This
Requirements Document is focused on information needed to facilitate the electronic
exchange of consumer preferences regarding the use and management of their associated
health information. The 2009 Consumer Preferences Requirements Document is divided
into the following sections:
Section 1.0, Preface, includes a Requirements Document Review Guidance, that
indicates who the end users of this document are intended to be and what sections
may be most relevant to these various end users. Additionally, this section outlines
the amended approach utilized to develop the Requirements Document, describes
the sections of the document and denotes any significant changes from previous Use
Cases.
Section 2.0, Introduction and Scope, describes the background, progress to date, therequest being made to HITSP and the scope of that request.
Section 3.0, Stakeholders, lists the individual stakeholders and organizations that
participate in the activities described in this Requirements Document.
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Section 4.0, Issues and Policy Implications, describes issues, obstacles and policy
considerations and/or implications related to accommodating and supporting
consumer preferences.
Section 5.0, Perspectives & Scenarios, describes the perspectives/roles of the
stakeholders participating in the events and actions of the underlying scenarios that
are supported by the process diagrams and information exchanges described in later
sections.
Section 6.0, Process Diagrams, depicts the business processes surrounding consumer
preferences that may or may not involve health information exchange; the process
diagrams are described in the Events and Actions component of this section.
Section 7.0 Information Exchanges; depicts the focused information exchanges that
standards development organizations should address.
Section 8.0, Functional Needs, describes the combination of end-user needs and
system behaviors that support interoperability and information exchange.
Section 9.0, Data Set Considerations, provides a comprehensive (though not
exhaustive) framework that can be used to support standards development and to
accommodate the major types of consumer preferences.
Appendix A, Glossary, provides contextual descriptions of key concepts and terms
introduced in this Requirements Document.
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1.3 RequirementsDocumentReviewGuidanceThe Consumer Preferences Requirements Document describes a framework for the
electronic exchange among multiple stakeholders of the preferences consumers may have
regarding the management of and controlling access to their information and potentially
sensitive health information (SHI) utilizing standard message formats, terminologies and
data sets (further defined in Sections 2.0 and 9.0). Further, it is intended to support
current and future health information exchange activities as these concepts and associated
terminologies evolve.
In order to best support multiple stakeholders, guidance on how to review this document is
included below. The guidance highlights the sections that may be most pertinent to a given
stakeholder. These sections can be utilized separately or in combination.
Figure 1.3 Requirements Document Review Guidance
Requirements Document Review Guidance
Stakeholder Section Focus
Consumer Advocacy Groups& Policy Setting Organizations
Issues & Policy ImplicationsSection
Guiding principles
Standards DevelopmentOrganizations (SDO)
Perspectives and Scenarios,Process Flows, Events andActions, Information Exchange
Standards harmonization
Providers Process Flows, InformationExchange, Issues & PolicyImplications
May be incorporated intocertification criteria
Consumers & General Public Issues & Policy ImplicationsSection, Process Flows,Events and Actions
Informative
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2.0 IntroductionAs the healthcare system moves toward the adoption of electronic health records, the need
to protect the privacy of health information and promote security is paramount. Inaccordance with the American Recovery and Reinvestment Act of 2009 (ARRA), which
includes the Health Information Technology for Economic and Clinical Health (HITECH) Act,
privacy and security protections are essential to building public trust and encouraging the
use of Health Information Technology (HIT). Without appropriate protections, consumers
may be less willing to participate in information exchange and the benefits of an
electronically enabled healthcare delivery system may not be fully realized.
The electronic exchange of consumer preferences is an integral step on the path towards
enhanced privacy, security and public trust in the exchange of health information.
For the purposes of this document, the term consumer preferences is used to collectively
represent several interrelated capabilities including, but not limited to:
the ability for a consumer to define permissions for who is permitted to access
information in their electronic health record (EHR) and under what circumstances
this access is appropriate,
the ability for consumers to express preferences regarding how and under what
circumstances their health information should or should not be made available to
others by their healthcare providers;
the ability for consumers to authorize the release of their health information to
another provider or third party; and
the ability to establish various types of consumer preferences including but not
limited to consents, advance directives and other potential types outlined in Section
9.0, Data Set Considerations.
In order to realize the benefits of the electronic exchange of consumer preferences,
technologies, harmonized data standards and policies which facilitate the expression,
execution and exchange of consumer preferences and their associated health information,
must be defined in order to support interoperability. These standards must address the
privacy concerns of consumers and organizations and be founded on business processes
which comply with certification rules prescribed by the Department Health & Human
Services (HHS) as well as state and federal law.
The identification and harmonization of standards for exchanging consumer preferences will
create a foundation which may facilitate and encourage consumers to participate in health
information exchange activities, to authorize the release of their data and to determine what
information should be released to a specialist, hospital, personal health record (PHR), a
surrogate such as a Medical Home or a health record bank. While different consumer
preferences may be applicable in different jurisdictions and settings, a standardized
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approach to the exchange and use of those preferences will support common HIT
implementations as well as interactions between disparate organizations.
2.1 ProgresstoDateIn April and June of 2008, the American Health Information Community (AHIC) approved arecommendation to develop documents that address Extensions/Gaps from the Use Cases
published between 2006 and 2009. One of the Extensions/Gaps prioritized for subsequent
processing in the national health information technology (HIT) agenda activities in early
2009 was consumer preferences. AHIC requested that the 2009 Consumer Preferences
Extension/Gap address the electronic exchange of information describing consumer
preferences between consumers, healthcare providers, healthcare entities, entities involved
in health information exchange activities and with other entities as authorized by the
consumer.
In the development of this Requirements Document the AHIC priorities, 2009 Consumer
Preferences Extension/Gap and other previous publications were referenced. This ConsumerPreferences Requirements Document will provide further context for the national health
information technology agenda activities, beginning with the selection of harmonized
standards by HITSP. Therefore, this Requirements Document is intended to expand upon
the Consumer Preferences Extension/Gap Document that was published in early 2009.
In subsequent activities, the harmonized standards will be tested, refined and implemented.
Components that need to be considered during the standards identification and
harmonization activities include a standardized vocabulary, data elements, data sets and
technical standards that support the information needs and processes of consumers and
those involved in implementing consumer preferences. During the development of the
document there will be an opportunity for review and feedback by interested stakeholders
within both the public and private sectors.
To date, neither the ONC Coordinated Federal Health IT Strategic Plan, nor the national
health information technology agenda, including the activities of AHIC and HITSP, has
formally addressed all of the interoperability considerations for the communication of
consumer preferences to support the goal of patient/consumer focused healthcare and
population health.
Therefore, the purpose of this document is to support the ONC Strategic Plan and the
national HIT agenda related to standards development and harmonization process by
describing business processes, information exchanges, stakeholders, functionalrequirements, issues and policy implications involving consumer preferences.
Previously published AHIC Use Cases and HITSP work products should also be leveraged
during standards harmonization for this Requirements Document.
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The 2006 Consumer Empowerment Registration and Medication History Use Case
describes the needs for a consumer to be able to establish permissions and access
rights for viewing their data;
The 2007 Consumer Access to Clinical Information Use Case describes the needs for
a consumer to identify those providers who are permitted to access information in
the consumers PHR and what data they are permitted to access. Also describes the
capabilities needed to communicate a consumer's decisions to other entities which
also hold data about the consumer.
HITSP Access Control Transaction Package (HITSP/TP20)
HITSP Manage Consent Directives Transaction Package (HITSP/TP30)
HITSP Patient ID Cross-Referencing Transaction Package (HITSP/TP22)
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2.2 ScopeThe Consumer Preferences Requirements Document describes a framework for the
electronic exchange among multiple stakeholders of the preferences consumers may haveregarding the management of and controlling access to their information and potentially
sensitive health information (SHI) utilizing standard message formats, terminologies and
data sets. The scope of this Requirements Document includes a high-level description
detailing:
Key actors involved in the expression and creation of consumer preferences, namely
the consumers, providers and organizations handling this information
Descriptions of the expression, transmission and application of consumer preferences
How consumer preferences are exchanged between electronic systems
The exchange of health information authorized by a consumer preference
The potential types of consumer preferences
The location of a consumer preferences origin and storage
In addition, examples of implications and ramifications regarding the execution of consumer
preferences are discussed.
Certain aspects of the handling of consumer preference data are outside of the scope of this
document including:
The details surrounding consumer education processes and requirements
The process for reconciling situations where multiple, conflicting preferences exist forone consumer/patient
Policies regarding whether or not a consumer preference is expected to be honored
or accepted when sent from one entity to another
The consequences of not following appropriate consumer preference procedures asprescribed by state, local or entity policy
The process and requirements for classifying and segmenting an individualsdemographic and clinical information in a way that supports that individuals
expressed preferences regarding what information or data types should be
designated as sensitive health information
The mechanics of consumer auditing and tracking of this information, which has been
addressed in the 2007 Consumer Access to Clinical Information Use Case
These out-of-scope issues may best be handled by laws in particular jurisdictions, policies
the entities sending or receiving this information and, in some cases, by the Department of
Health and Human Services (HHS).
The policies for supporting consumer preferences are expected to evolve in the coming
years, which will necessitate the leverage and expansion of current standard to support
evolving needs.
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At the highest level, consumers, require the capability to opt in or opt out of the
exchange of their health information. Consumers may also request that only certain
information, episodes of care or classes of information be shared. These classes of
information could be classified at varying levels of granularity. Defining the needed levels of
granularity is not the main focus of this Requirements Document.
For the purposes of organizing consumer preference information for increased levels of
granularity, the information may be broadly classified. Section 9.0 of this document (Data
Set Considerations) discusses classification in greater detail.
This Requirements Document focuses on processes, functional needs and data set
considerations relating to consumer preferences in order to help in the development of
standardized data exchanges. The Office of Interoperability and Standards (OIS)
acknowledges that there are still key policy issues which need to be defined and developed
in the area of consumer preferences. While these policy decisions are beyond the scope of
this document, the implications of these policy decisions will be addressed in Section 4.0 of
this document (Issues and Policy Implications).
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3.0 ConsumerPreferencesStakeholdersExamples of stakeholders that may be directly or indirectly involved in the exchange of
consumer preference information are listed below. Contextual descriptions of each type ofstakeholder can be found in the Glossary (Appendix A).
Stakeholders that may be directly involved in the exchange of consumer preference
information may include:
Figure 3.0.1 Consumer P reference Stakeholders
Consumer Preference Stakeholders
Clinicians Healthcare Payors
Consumers HIT Vendors and Providers
Government Agencies Laboratories
Health Information
Exchanges
Patients
Health Record Banks Public Health
Agencies/Organizations
Healthcare Entities Standards Development
Organizations
Additional stakeholders that may assist in consumer preference information communication
may include:
Figure 3.0.2 Additional Stakeholders for Consumer Preferences
Additional Stakeholders
Family Members/Surrogate Decision
Makers/Caregivers
Public Health Agencies
Research Entities
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4.0 IssuesandPolicyImplicationsA number of issues in todays health information technology environment may present
obstacles to achieving healthcare data standardization and interoperability. Many issuesand policy implications common to all exchanges of health information were presented and
discussed within the 2006 2009 AHIC Use Cases. Examples of specific issues and
obstacles more specifically related to exchanging consumer preferences are outlined below.
4.1 ConsumerParticipation1. Additional guidance from ONC may be needed in the area of consumer participation in
electronic health information exchange. A national policy may be needed to address
the variations in policies regarding opt-in/opt-out, classifications and granularity
requirements across health information exchanges and healthcare organizations. The
variations could make integration and the implementation of electronic exchange ofconsumer preferences more difficult.
4.2 ConsumerEducation1. For the optimal execution of consumer preferences, consumers must understand the
content of their electronic health record, their rights regarding the protection and use
of their information and the implications of disclosingor not disclosing their medicalinformation.
2. In addition, organizations that receive consumer preferences may be responsible for
informing the individual of any limitations that may exist within the organization, their
systems or state and federal law that could prevent them from acting in accordancewith the preferences expressed by the consumer. Both of these issues may require
some level of consumer-oriented educational intervention to be effectively addressed.
4.3 Access,ControlandDisclosure1. While consumers may express preferences for who can view and exchange their
personal health information, privacy controls as well as the means for restricting data
access are not standardized nor are they entirely supported by existing policies or
regulations. In addition, the policies and regulations that do exist vary widely from
state to state and among providers and healthcare entities.
2. A clear standard or policy may be needed to establish a universal method formanaging the process for notifying appropriate stakeholders of the existence of a
consumer preference. In some instances, the mere existence of a consumer
preference for a specific category (e.g., HIV status) may provide clues to an
individuals health status.
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3. A clear standard or policy may be needed to identify that a category or type of data
has been withheld due to the expression of a consumer preference. There may be a
need to communicate this event without specifying the category or type of data that
has been withheld.
4. Information sharing and access policies are not standardized among providers or HIEs
and may present challenges to interoperability regarding conflicts that arise.
5. Additional policy guidance may be needed to address the use of health information
data after it has been received or generated by a covered entity. Protections to
individually identifiable health information (policy and technical) may be required to
ensure that consumers are informed of and approves any secondary uses of their
health information.
6. The existence of consumer-provided data (e.g., data entered into a PHR) in a
repository should not imply that the consumer has consented to the sharing of that
information. By default this information remains private and requires authorizationfor disclosure.
7. During the collection of consumer preferences, policies may need to be established to
prevent situations where consent is obtained through coercion. For example, coerced
consent situations may occur when a consumer is given a financial penalty or reward
for providing consent or may occur when a consumer is unaware of their rights to
withhold or limit the disclosure of personal information.
8. Currently states have differing break the glass access regulations and restrictions.
Standardized guidance may be required to establish break the glass protocols that
can be consistently interpreted across state lines.
4.4 SegmentationofHealthInformation1. Clarification may be needed for consumers to explain the protections relating to and
the differences between Sensitive Health Information (SHI), Protected Health
Information (PHI) and Individually Identifying Health Information (IIHI). A national
discussion that explores the definition of sensitive health information and how that
information might be classified would help to advance the meaningful creation and
use of standards and policies for identifying and managing these different classes of
information.
2. A universal process or policy may be needed for classifying sensitive healthinformation for the purposes of upholding consumer preferences. This may include a
common taxonomy for defining elements that collectively articulate consumer
preferences within electronic health records and other data stores.
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3. A national policy or standard may be needed to address a consistent method of
expressing consumer preferences within the varying state laws and healthcare entity
policies. These policies accommodate varying levels of granularity and protections
among states and prescribe conflicting levels of responsibility. A harmonized method
to accommodate the variances in consumer preferences policies may be required forinteroperability.
4.5 LiabilityandAccountability1. Additional guidance may be needed to reconcile and resolve situations where
consumer preferences are in conflict. Situations may arise from consumers providing
multiple preferences or state laws may override or conflict with a consumers
preference.
2. Guidance regarding the enforcement of consumer preferences may be needed. An
understanding of responsibilities and liabilities may need to be defined or clarified for
organizations that create, exchange or store consumer preferences.
3. Laws, policies and procedures regarding liability, oversight and accountability may
need to be established or standardized for handling breaches of consumer
preferences.
4. State laws regarding consumers ability to limit access to their health information to a
specific person, practitioner or department within a healthcare organization vary
widely. Additional policies may be needed to clarify this issue.
5. Providers have expressed concerns regarding potential liabilities they may assume in
instances where their patients withhold some portion of their health information.
Further discussion around potential policy approaches to addressing this issue is
warranted.
6. Entities may enforce policies which dictate the acceptance or honoring of consumer
preferences provided by other organizations or entities. These internal policies may
be subject to federal, state and local law, which may hinder the electronic exchange
of consumer preferences.
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5.0 Perspectives&ScenariosThis section describes the actors participating in the events, their roles or perspectives and
their actions in the context of the underlying scenarios. These scenarios are supported by
the Process Diagrams (Section 6.0) and Information Exchanges (Section 7.0).
The Process Diagrams (Section 6.0) outline the business processes surroundingconsumer preferences, which include descriptions of events and actions.
The Information Exchanges (Section 7.0) compliment the process diagrams andare meant to express the focused information exchange events that HITSP should
address.
5.1 Perspectives/Roles: Consumer: Any recipient or legal proxy of a recipient of healthcare who wishes to
create preferences regarding aspects of their care and how their health-relatedinformation (HRI) is accessed or shared.
Primary Receiving Organization: Any organization (provider, information
exchange or other information recipient) who receives and may act on or manage aconsumer preference and its related health information.
Secondary Receiving Organization: Any organization (provider, informationexchange or other information recipient) who receives from another organization and
may act on or manage a consumer preference and its related health information.
5.2 ScenariosFigure 5.2 Consumer Preferences Scenarios
Scenario 1: Creation of a P reference The process by which the consumer
articulates a consumer preference by expressing their preference (decisionsregarding access control, consent, content preferences, etc.) to the primary receiving
organization.
Scenario 2: Preference Management: Application, Exchange and
Replacement Process The process by which the primary receiving organization
identifies, retrieves, applies, updates and exchanges a consumers preference to a
secondary receiving organization
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6.0 ProcessDiagramsThis section depicts the business processes surrounding consumer preferences and not necessarily
process diagrams are described in the Events and Actions component of this section.
6.1 Scenario1:CreationofaPreferenceFigure 6.1 Scenario 1: Creation of a P reference P rocess Diagram
Secondary
Re
ceiving
Organization
Primary
Receiving
Organization
Consumer
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6.2 EventsandActionsforScenario1:CreationofaPreferenceCode Event
Action
Perspective
Description
6.1
Event: Provide Education
MaterialsPrimary Receiving Organization
6.1.1Action: Primary receiving
organization provides educational
materials to the consumer
Note: This action is out of scope
In order for consumers to make informed choices regarding their
preferences for the classification and handling of their health-
related information, they may need to be educated regarding their
choices and the content of their EHR. The primary receiving
organization may need to provide educational materials to
consumers prior to the expression of their preferences explaining
the choices they could make regarding the sharing or sequestering
of information they might consider sensitive as well as information
that may be pertinent in the delivery of their healthcare. This
information may be in the form of printed documents, videos, on-
line or live interactive sessions. The details of the delivery and
content of this information will likely vary from state to state and
from organization to organization.
6.2Event: Receive/ Review
Education Materials
Consumer
6.2.1Action: The consumer receives
and reviews the education
materials before creating a
preference with the primary
receiving organization
Note: This action is out of scope
In order to make informed choices regarding their preferences for
handling their health-related information, the consumer may need
to acquire some level of education, likely provided by their
healthcare provider, PHR or HIE. This step may need to precede
any specific decisions or actions taken by the consumer in
expressing their preferences for handling their HRI. The details of
the delivery and content of this information will likely vary from
state to state and from provider to provider.
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Code Event
Action
Perspective
Description
6.3Event: Discussion Regarding
Consumer Preference Choices
Consumer + Primary Receiving Organization
6.3.1Action: Provider has a discussion
with the consumer to provide
assistance with consumer
preference choices
Note: This action is out of scope
The consumer may have a discussion regarding the choices and
mechanisms available for expressing their preferences for handling
their health-related information. The primary receiving
organization may provide a medical professional or counselor to
discuss these choices which may help the consumer make
appropriate informed decisions.
6.4Event: Identity Verification Consumer + Primary Receiving Organization
6.4.1Action: Consumers identity is
verified by the primary receiving
organization
Prior to interacting with the primary receiving organizations
electronic system, the consumer must be positively identified within
that system. The authentication process takes place within the
providing entity and must be completed before the consumer can
express their preferences.
Existing capabilities exist for this functionality, HITSP TP22: Patient
ID Cross-Referencing as well as the NHIN Patient Discovery
Specification both address establishing the consumer identity.
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Code Event
Action
Perspective
Description
6.5Event: Express Preference Consumer
6.5.1 Action: Consumer decides to
express preferences
The consumer decides, after sufficient education and discussion, to
express their preferences. The consumer expresses their
preferences from the available choices regarding the sharing of
pertinent medical information. The options the consumer has
regarding what information can be restricted and with whom the
information should or should not be shared may be different
depending on the state and the provider organization. There are
multiple technical mechanisms by which the preferences may be
exchanged. These mechanisms are described in the following
alternative actions and correspond to information flows 1a through
1e as depicted in Section 7.0, Information Exchanges. Each of the
following alternatives is dependent on positive identification and
authentication of the consumer or the recipient or legal proxy of a
recipient of healthcare.
6.5.1.1Alternative Action: Consumer
preferences expressed via a PHR
If the consumer has a PHR or other patient-controlled repository,
they may express the preferences directly into the PHR. These
preferences can then be shared from the PHR in various ways which
are described in section 6.5.1.3 and 6.5.1.4. The consumer may
have set these preferences prior to, during or subsequent to an
encounter with a primary receiving organization.
6.5.1.2Alternative Action: Consumer
preferences expressed via a
providers EHR
The consumer may express their preferences via a providers EHR
system. This process may be accomplished either by the provider
entering information directly into the system or by the consumer
filling out a paper form. The information on the form is then
transferred to the providers system by a representative from the
providers organization.
6.5.1.3Alternative Action: Consumer
preferences exchanged through
direct connection between PHR
and providers EHR
This alternative aligns with activities described in section 6.5.1.1.
Once the preferences have been expressed and stored on the
consumers PHR, the PHR may be connected directly to the
providers EHR system and the preferences previously set may be
exchanged directly between those two systems.
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Code Event
Action
Perspective
Description
6.7Event: Create Preference Primary Receiving Organization
6.7.1 Action: Primary receiving
organization creates the
preference(s) based on the
instructions from the consumer.
Once the primary receiving organization has received the
preferences as expressed by the consumer, the preferences are
created within their system.
6.8Event: Store Preference Primary Receiving Organization
6.8.1Action: Primary receiving
organization stores the
preferences
The primary receiving organization may retain the preference
profile for later use by storing it in accordance with federal, state
and local internal policies and procedures.
6.9Event: Audit and Reporting of
the Preference and/ or
Associated Information
Primary Receiving Organization
6.9.1Action: Audit reports of the
preference and/or associated
information are generated
Audit reports are generated in the primary receiving organizations
system. These audit reports may be used in the future by the
entity itself, they may be requested by a consumer or may be
utilized by an outside auditing, certifying or accreditation
organization.
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6.3 Scenario2:PreferenceManagementFigure 6.3: Scenario 2: Preference Management: Application, Exchange and Replacem
Consumer Preferences
Sec
ondary
Receiving
Organization
Primary
ReceivingOrganization
Consumer
Share Preference
Stop Flow ofInformation
6.18
6.22
Receipt of thPreference
Request of Audit
6.236.19
Consumer EmpowermentConsumer Access to Clinica
Information Use Case
Scenario 2: Preference Management: Application, Exchange and Replacement
Opt In
Classification
IdentityVerification
6.24
6.21
Apply Preference
6.20
6.11
6.29
6.14
Opt In WithClassification
6.13
Transfer/Transmission ofPreference and/or AssociatedInformation
Audit andReporting of thePreference and/or AssociatedInformation
IdentifyPreference
Replace ExistingPreference
Identify RelevantSecondaryReceiving
Organization(s)
RequestPreference
Action
IdentityVerification
Relay
ReplacementStatus to
AppropriateOrganization(s)
6.15
6.10
6.166.17
OptOut
Revoke
Request toAmend Existing
Preference
6.12
Out of Scope Event
In Scope Event
Legend
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6.4 EventsandActions:Scenario2ManagementandExchangeofPreferencesCode Event
Action
Perspective
Description
6.10Event: Request P reference Action Consumer
6.10.1Action: Consumer requests an update to their
profile
Once a consumer has expressed their preferences
and a profile has been established, the consumer
may wish to amend these preferences or share them
with another organization. The consumer must
submit a request to the primary receiving
organization to begin this process. The process
begins by retrieving the profile from the primaryreceiving organizations electronic system.
6.11Event: Iden tify Primary Receiving Organization
6.11.1Action: Primary receiving organization identifies
the consumer preference
Prior to the application of the consumer preference,
the primary receiving organization identifies the
preferences in their own system and/or retrieves
them from a PHR or other system.
6.12Event: Request to Amend Existing Preference Consumer
6.12.1Action: Consumer makes request to amend their
profile
Once the consumers preference profile has been
identified, they must direct the system to begin the
process of amending the preference profile. If a
replacement is desired, then the process continues
down the alternative path to Event 6.15.
6.12.2Alternative Action: Consumer makes request to
amend their profile
If the consumers request is to amend their
preference profile, the process starts with the
revocation of the preference profile. Once the profile
has been revoked, the process continues down this
alternative path through Event 6.15 through 6.17
then returns back to Event 6.5 in which the
consumer expresses their amended preferences.
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Code Event
Action
Perspective
Description
6.13Event: Apply Preference Primary Receiving Organization
6.13.1 Action: Consumer preferences are applied The consumer preferences must be applied to the
appropriate SHI. The primary receiving organization
must take the preferences and implement them.
This step represents a decision point. Depending on
the wishes of the consumer, the instructions for
medical information may be to opt in, opt out or to
opt in with certain restrictions on the information
based on the classifications and choices offered to
the consumer. HITSP TP20 and TP30 address the
general opt in and opt out situations, but there are
gaps in the standards where specific classifications
of the data are utilized for consumer preferences.
6.13.1.1Alternative Action: Opt in This alternative represents the choice to opt in to
sharing the consumers medical information in its
entirety. In this case the data may be shared with
providers as necessary, including secondary
receiving organizations. No restrictions are put on
the information beyond the standard restrictions
afforded all SHI based on national, state, local or
entity policy depending on the context of care.
HIPAA rules must always apply to this information.
6.13.1.2Alternative Action: Opt out This alternative represents the most restrictive
choice on the part of the consumer, where no data
sharing may take place outside of the primary
receiving organization. However, there may be
provisions at the entity site whereby providers can
utilize a break the glass protocol (i.e. access the
EHR in opposition to the patients preference) if an
emergency warrants the sharing of this information.
However, if a provider breaks the glass it may be
necessary to let the consumer know about this
situation as soon as possible. This issue is
addressed in the 2007 Consumer Empowerment:
Clinical Access to Clinical Information Use Case in
Event/Action: 7.1.4.
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Code Event
Action
Perspective
Description
6.13.1.3Alternative Action: Opt in with classification This alternative represents additional considerations
regarding consumer preferences. If a consumer
chooses this option, they may wish to restrict or
sequester certain parts or data within their EHR. The
specific classification of SHI is discussed in the Data
Set Considerations Section 9.0 of this Document.
6.14Event: Stop Flow of Info rmation Primary Receiving Organization
6.14.1Action: Primary receiving organization stops the
flow of information based on the consumer opting
out
If the consumer decides to Opt Out of
sharing/exchanging their EHR, the primary receiving
organization must not allow for or stop the flow of
this information to exchanges and/or to other
healthcare providers. The EHR will remain with the
primary receiving organization and the record may
be used according to federal, state and local internal
policies and procedures.
6.15Event: Replace Existing Preference Primary Receiving Organization
6.15.1Action: Primary receiving organizations system
replaces the consumers preference profile
Once the consumer has expressed their wishes to
replace or amend the preference profile, the
instructions are given to the primary receiving
organization and the status of the consumers
preference profile is replaced.
6.16Event: Identify Relevant Secondary Receiving
Organization(s)
Primary Receiving Organization
6.16.1Action: Primary receiving organization identifies
secondary receiving organizations
The primary receiving organization must identify any
and all secondary receiving organizations to which
the consumers preference profile was transmitted.
The audit report may be used to determine all
relevant entities.
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Code Event
Action
Perspective
Description
6.17Event: Relay Replacement Status to
Appropriate Organization(s)
Primary Receiving Organization
6.17.1Action: Relay the replacement order to all the
appropriate secondary receiving organizations.
The primary receiving organization notifies the
secondary receiving organizations of the inactivation
of the consumer preference profile and of its
replacement.
6.18Event: Classificati on Primary Receiving Organization
6.18.1Action: Consumers health information is classified
prior to data exchange
The Primary receiving organization must be able to
exchange information based upon the classification
specified by the consumers preferences and
recognized standards.
Certain granular pieces of information may be
sequestered or not included in the EHR or in the
information which is exchanged.
6.19Event: Share Prefer ence Primary Receiving Organization
6.19.1Action: Preferences are prepared for sharing with
information exchange or secondary receiving
organization
The primary receiving organizations EHR system
gathers the preferences and relevant associated
medical information and processes this information
into a transmittable packet of data to be exchanged
via an information exchange or other provider.
Secondary receiving organizations may not be
obligated to accept or uphold preferences
established by primary receiving organizations. The
honoring of preferences when sent from one entity
to another is out of scope for this requirements
document.
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Code Event
Action
Perspective
Description
6.20Event: Audit and Reporting of the Preferences
and/ or Associated Information
Primary Receiving Organization
6.20.1Action: Audit reports of the preference and/or
associated information are generated
Audit reports are generated in the primary receiving
organizations system. They may also be generated
in subsequent systems. These audit reports may be
used in the future by the entity itself, they may be
requested by a consumer or may be utilized by an
outside auditing or accreditation organization.
6.21Event: Identity Verification Primary Receiving Organization
6.21.1
Action: Identity is verified in the primary receiving
organizations system
Prior to transmission of the consumer preferences,
the identity of the consumer, whose data is being
exchanged and the secondary receiving
organization, must be positively verified. This
verification is required to take place prior to
exchange.
Existing capabilities exist for this functionality, HITSP
TP22: Patient ID Cross-Referencing as well as the
NHIN Patient Discovery Specification both address
establishing the consumer identity.
6.22Event: Identity Verification Secondary Receiving Organization
6.22.1Action: Identity is verified in the secondary
receiving organizations system
Prior to completion of the transmission of the
consumer preferences, the identity of the consumer
whose data is being exchanged, and the secondary
receiving organization must be positively verified a
second time; this time the verification takes place
upon receipt by the secondary receiving
organization.
Existing capabilities exist for this functionality, HITSP
TP22: Patient ID Cross-Referencing as well as the
NHIN Patient Discovery Specification both address
establishing the consumer identity.
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Code Event
Action
Perspective
Description
6.23Event: Transfer/ Transmission of P reference
and/ or Associated Information
Primary Receiving Organization
6.23.1Action: The consumer preferences are transmitted
along with associated information
Once events 6.21 and 6.22 have been completed,
the consumer preferences and all pertinent
associated medical information are transmitted from
the primary receiving organization to the secondary
receiving organization. The secondary receiving
organization may be a health information exchange,
a national or regional information network or simply
another provider who requires the electronic health
record of the consumer.
6.24Event: Receipt of the Preference Secondary Receiving Organization
6.24.1Action: The consumer preferences are received by
the secondary receiving organization
The consumer preferences and associated
information is received by the secondary receiving
organizations electronic system. At this time the
information may be integrated into a new or existing
EHR and may then be used by care coordinators or
clinicians working at the secondary receiving
organization.
6.25Event: Acknow ledgment of Receipt and
Reconciliation
Secondary Receiving Organization
6.25.1Action: Acknowledgment of receipt of consumer
preferences
Once the consumer preferences are received at the
secondary receiving organization, an electronic
acknowledgement is transmitted back to the primary
receiving organization and the consumer. This is a
simple acknowledgement of the receipt of the
electronic information by the secondary receiving
organizations system. It is not necessarily an
agreement to abide by the preferences. These
policies are addressed in the Issues and Policy
Implications Section 4.0.
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Code Event
Action
Perspective
Description
6.25.2Action: Reconciliation of consumer preferences
between entities
Note: This action is out of scope.
If the consumer already has expressed their
preferences and some information is already in the
secondary receiving organizations system, there
may be a need to reconcile the multiple sets of
consumer preferences. The receiving system should
have the ability to identify which set of consumer
preferences is the most recent, the source of the
consumer preferences, etc.
The process for the reconciliation of preferences is
out of scope for this requirements document. This
step is mentioned to address the need for this
functionality.
6.26 and
6.20Event: Receipt of Reconciliation Notice Consumer and Primary Receiving Organization
6.26.1Action: The consumer and primary receiving
organization receives a notice of consumer
preference reconciliation.
If reconciliation is necessary (action 6.25.2) and a
notice is sent out by the secondary receiving
organizations system, the consumer and the
primary receiving organization may receive this
notice.
6.27 Event: Store Prefe rence Secondary Receiving Organization
6.27.1Action: Secondary receiving organization stores
the preferences in their data repository
The secondary receiving organization may retain the
consumer preference profile for later use by storing
it in accordance with federal, state and local internal
policies and procedures.
6.28Event: Audit and Reporting of the P reference
and/ or Associated Information
Secondary Receiving Organization
6.28.1Action: Audit reports of the preference and/or
associated information are generated
Audit reports are generated in the secondary
receiving organizations system. These audit reports
may be used in the future by the entity itself, they
may be requested by a consumer or may be utilized
by an outside auditing, certifying or accreditation
organization.
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Code Event
Action
Perspective
Description
6.29Event: Reques t of Audit Consumer
6.29.1 Action: Consumer requests an audit of their
expressed consumer preferences
Note: This action is out of scope
The consumer may request an audit of their
consumer preferences. This request may be for the
primary, secondary or other receiving organizations
or providers that are storing the consumers
preferences. This issue has been addressed in the
2007 Consumer Empowerment: Consumer Access to
Clinic Information Use Case in Event/Action 7.1.4.
The process involved with a consumer requesting an
audit has been deemed out of scope for this
Consumer Preferences Requirements Document.
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7.0 InformationExchangesInformation exchanges depict the focused information exchanges that standards
development organizations should address.
Figure 7.0 Information Exchange for Consumer P references
6.5, 6.12
Express orRevokePreference
6.6, 6.7, 6.24
Receipt ofPreference
6.23Transfer/
Transmission ofPreference and/or
AssociatedInformation
6.25Acknowledgement
of Receipt andReconciliation
HIEIntermediary
orPoint to Point
EHR
PHR
Healthcare Entities
Social Agencies
Other Providers
Consumer ProviderInformation Sources and
RecipientsInformation Exchange
4
3
1b
1e
1c
1d
3
4
1d
6.25Acknowledgement
of Receipt andReconciliation
2a
1a
6.20, 6.28Audit and
Reporting of thePreference and/or
AssociatedInformation
556.29
Request of Audit6
6.26Receipt of
ReconciliationNotice
2b
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7.1 LegendThe Information Exchange Diagram extracts the events from the Process Diagram where
consumer preference information is actually exchanged between entities in order to
illustrate the flow of a consumers preference more clearly. The exchanges of information
are explained below.
Figure 7.1 Information Exchange Legend
Information Exchange
1a The request to initially express, replace or amend a consumer preference is
completed via a PHR.
1b The request to initially express, replace or amend a consumer preference is
completed via a providers EHR.
1cThe initial, replaced or amended consumer preference is shared with theclinician through a direct connection between the providers EHR and the
consumers PHR.
1d The initial, replaced or amended consumer preference is exchange with the
provider via an information exchange.
1e The initial, replaced or amended consumer preference may be shared via a
health information exchange using publish/subscribe, push or query/retrieve
methods of exchange.
2a Provider exchanges with and reconciles the consumer preferences in theirsystem against the consumer preferences in the information exchange. Potential
conflicts of existing consumer preferences are resolved.
2b The consumer is notified if their preference was reconciled.
3 Provider communicates information as appropriate via the information exchange.
4 Provider receives acknowledgement of receipt or publication of consumer
preference via an information exchange, regardless of sending method
(publish/subscribe, push or query/retrieve).
5 Provider creates/updates and exchanges or transmits an audit log regarding
consumers preference.
6 The consumer requests and receives a copy of the audit log for their preference.
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8.0 FunctionalNeedsThe Functional Needs Section describes the combination of end-user needs and system
behaviors that support interoperability and information exchange.
8.1 UniversalFunctionalNeeds1. Identity Verification (Events 6.4, 6.21, 6.22)
a. The ability to positively identify the consumer is required by:
i. The primary receiving organization: to verify that they are creating,
retrieving or transmitting the preference and/or the associated
information for the correct consumer
ii. The secondary receiving organization: to verify that they have
received the consumer preferences and/or the associated information
for the correct consumer
b. The ability to positively identify the primary receiving organization is required
by:
i. The secondary receiving organization: to ensure they are receiving a
preference from the correct organization
ii. The consumer: to verify that they are expressing or transmitting a
preference to the correct organization
c. The ability to positively identify the secondary receiving organization is
required by:
i. The primary receiving organization: to ensure the preference is
transmitted to the correct organization
ii. The consumer: to verify that their preference was transmitted to the
correct organization
8.2 ConsumerFunctionalNeeds1. Express Preference (Event 6.5)
a. The ability for the consumer to express preference choices to a primary
receiving organization and have that preference applied and exchanged
appropriately.
2. Amend Preference (Event 6.10)
a. The ability for the consumer to amend a preference already in existence at a
primary receiving organization. There needs to be the technical ability tonotify all secondary receiving organizations of the amended consumer
preferences.
3. Replace Preference (Event 6.10, 6.12)
a. The ability for the consumer to inactivate and replace a preference at a
primary receiving organization. There needs to be the technical ability to
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notify all secondary receiving organizations of the inactivation and
replacement of consumer preferences.
4. Request Exchange (Event 6.10)
a. The ability for the consumer to request the exchange of preference from oneorganization to another.
5. Request Audit (Event 6.29)
a. The ability for the consumer to request an electronic copy of their
preferences audit log at a primary receiving organization.
8.3 Primary/SecondaryReceivingOrganizationFunctionalNeeds1. Create Preference (Event 6.7)
a. The ability for any organization to receive a consumers expression of their
preferences and create an electronic consumer preference profile.
2. Transmit Preference (Event 6.23)a. The ability for all organizations to electronically send and receive a consumer
preference and/or associated information or an update to a preference withanother organization in a secure manner upon request.
3. View Preference (Event 6.24)
a. The ability for any organization to view the consumer preference and/or
associated information of a positively identified consumer.
4. Store Preference (Event 6.8, 6.27)a. The ability for any organization to electronically store the consumer
preference and/or associated information in a secure manner.
5. Apply Preference (Event 6.13)
The ability to technically enforce any policy related restrictions that are
imposed at the federal, state or local level.
6. Amend Preference (Event 6.13)
a. The ability for the primary receiving organization to identify and amend a
consumer preference (at the consumers request) and electronically exchangethat update to any secondary receiving organization that received the original
consumer preference.
7. Replace Preference (Event 6.15)a. The ability for a primary receiving organization to inactivate and replace a
consumer preference or consumer preference profile (at the consumersrequest) and electronically communicate the replacement to any secondary
receiving organization that received the original preference.
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8. Transmit an Update of a Preference (Event 6.23)a. The ability for any organization that receives a consumer preference update
notice to enact those changes and relay that notice to any other organizationsthat they transmitted the consumer preference to.
9. Reconciliation of Conflicting Preferences (Event 6.25)a. The ability for all organizations to reconcile a consumer preference with any
other consumer preferences that the consumer may have expressed and theability to electronically communicate the reconciliation to the consumer.
10.Acknow ledge Receipt of Preference or Update (Event 6.25)The ability for any organization to electronically acknowledge the receipt of an
original, replaced or amended consumer preference.
11.Maintain an Audit Log of the Preference (Event 6.9, 6.28)
a. The ability for any organization to create and update an audit history
(including modifications, transmissions, views, etc.) of the consumer
preference profile and produce the audit log upon request.
12.Classify Data (Event 6.18)a. The ability of the primary receiving organization to segment information in
alignment with the classifications of information contained in consumerpreferences.
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9.0 DataSetConsiderationsIt is important to note that consumers, at the highest level, require the capability to opt in
or opt out of the exchange of their health information. Consumers may also request thatonly certain classes of information be shared. These classes of information and preferences
could be classified at varying levels of granularity. Defining the needed levels of granularity
is not focus of this Consumer Preferences Requirements Document.
This Data Set Considerations Section provides a comprehensive (not exhaustive) list of
classes of consumer preferences that should be considered in identifying, harmonizing and
developing standards. This section is only intended to be a guide for the development of
standards, however, it does not preclude, the use of existing standards approved by
standards development bodies such as HITSP.
They include:
9.1 IdentityandPreferenceVerification1. Consumer Information - addressed in 2006-2009 AHIC Use Cases
2. Primary/Secondary Receiving Organization Information
a. Provider Information
b. EHR information
c. HIE information
d. PHR information
3. Consumer Preference Information
a. Consumer preference identification information
b. Consumer preference audit information
i. Date and locations where the consumer preference was created,received, applied, stored, shared, transmitted, amended or replaced
9.2 DataClassificationPossible types of consumer preferences classifications
1. Access Restriction & Management
a. Consent & Disclosure of Information Sequestering or disclosing protected
health and/or sensitive health information, categories may include:
i. HIV/AIDS
1. Status or diagnosis
2. Medications
3. Treatment
4. Test results, etc
ii. Mental Health
1. Medications
2. Psychotherapy notes
3. Counseling or treatment
4. General information, etc.
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iii. Substance Abuse
1. Status
2. Treatment
3. Referrals, etc.
iv. Sickle Cell Anemia
1. Status
2. Test results
3. Genetic testing, etc.
v. Genetic Information
1. Newborn screening
2. Genetic testing
3. Personal genetic/genomic data
4. Family genetic/genomic information, etc
vi. Sexually Transmitted Diseases (STDs)
vii. Communicable or venereal disease
viii. Developmental diabetes
b. Role & Criteria Based Access
i. Organization
1. Primary/Secondary Receiving Organization Information (Section
9.1.2, a-d)
ii. Role
1. Provider personal identification information
2. Provider role or specialty
iii. Encounter Based Access & Authorization
1. Provider practice location (facility)
2. Hospital admission and discharge
3. Long term care admission and discharge4. Ambulatory care encounter
5. Outpatient visit encounter
6. Appointment Slots:
a. Date
b. Time
c. Duration
d. Appointment Type
e. Provider
f. Location
g. Resources, etc
iv. Embargoed Records1. VIP
2. Legal protections, etc
v. Time Limited Access
1. Start Date
2. End Date
3. Duration
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2. Content preference Preference surrounding delivering care or associated services
a. Status and/or designation
i. Advanced directives
ii. Do not resuscitate (DNR) order
iii. Healthcare proxies
iv. Living wills
v. Medical surrogates
vi. Access to family members, etc.
b. Care or associated service needs Communication needs
i. Appointment reminders
ii. Lab results, etc.
c. Comfort Needs
i. Non medical dietary restrictions
ii. Language needs
iii. Cultural needs
iv. Clergy preference, etc.
3. Components of Access Restrictions/Management and Content Preferences
i. Level/Status of Participation
1. Opt In or Opt Out
2. With or without additional classifications
3. With or without additional granularity
ii. Consent Information
1. Requestor & disclosure types
2. Requestor & disclosure locations
3. Type/purpose of use
4. Elements of consent5. Sensitive health flags or information
a. Clinical Scenarios
b. Clinical data types/classifications
i. Labs
ii. Meds
iii. Diagnosis, etc.
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Health Information Exchange: A multi-stakeholder entity which may be a free-standing
organization (e.g., hospital, healthcare system, partnership organization) that supports
health information exchange and enables the movement of health-related data within state,
local, territorial, tribal or jurisdictional participant groups. Activities supporting health
information exchanges may also include integrated delivery networks, health record banksand others.
Health-Related Information (HRI): For the purposes of this document, health-related
information refers to a superset of all of a consumers data that is associated with
healthcare delivery. This may include health information as well as demographic, insurance
and financial information.
Healthcare Information Technology Standards Panel (HI TSP): A cooperative
partnership between the public and private sectors. The Panel was formed for the purpose
of harmonizing and integrating standards that will meet clinical and business needs for
sharing information among organizations and systems.
Health Record Banks: Entities/mechanisms for holding an individuals lifetime health
records. This information may be personally controlled and may reside in various settings
such as hospitals, doctors offices, clinics, etc.
Healthcare Entities: Organizations that are engaged in or support the delivery of
healthcare. These organizations could include hospitals, ambulatory clinics, long-term care
facilities, community-based healthcare organizations, employers/occupational health
programs, school health programs, dental clinics, psychology clinics, care delivery
organizations, pharmacies, home health agencies, hospice care providers, pharmacies and
other healthcare facilities.
Healthcare Payors: Insurers, including health plans, self-insured employer plans and third
party administrators, providing healthcare benefits to enrolled members and reimbursing
provider organizations.
HIT Vendors and Providers: Organizations that develop and provide health information
technology solutions. These solutions may include personal health records, applications,
data repositories, and web services.
Individually identifiable health information (I IHI ): According to the Health Insurance
Portability and Accountability Act (HIPAA), IIHI is information that is a subset of health
information, including demographic information collected from an individual, and: (1) Is
created or received by a healthcare provider, health plan, employer or healthcare
clearinghouse; and (2) Relates to the past, present or future physical or mental health or
condition of an individual; the provision of healthcare to an individual; or the past, present
or future payment for the provision of healthcare to an individual; and (i) That identifies the
individual; or (ii) With respect to which there is a reasonable basis to believe the
information can be used to identify the individual.
http://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Acthttp://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Acthttp://en.wikipedia.org/wiki/HIPAAhttp://en.wikipedia.org/wiki/HIPAAhttp://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Acthttp://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Act -
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Laboratories: A laboratory (often abbreviated lab) is a setting where specimens are sent
for testing and analysis are resulted and then results are communicated back to the
requestor. The types of laboratories may include clinical/medical, environmental,
veterinarian and may be both private and/or public.
Medical Home: A model for providing care that is accessible, comprehensive and
coordinated and delivered in the context of family and community. A patients medical
home includes a clinician, referred to as the medical home provider, who is the central point
of planning, coordination and management of the patients health promotion, acute illness
care and chronic condition management.
Patients: Members of the public who receive healthcare services.
Personal Health Record System Suppliers: Organizations which provide specific PHR
solutions to clinicians and patients such as software applications and software services.
These suppliers may include developers, providers, resellers, operators and others who may
provide these or similar capabilities.
Protected Health I nformation (PHI ): According to HIPAA, PHI is any information about
health status, provision of healthcare or payment for healthcare that can be linked to an
individual.
Providers: The healthcare clinicians within healthcare delivery organizations with direct
patient interaction in the delivery of care, including physicians, nurses and other clinicians.
This can also refer to healthcare delivery organizations.
Public Health Agencies/ Organizations: Federal, state, local, territorial and tribal
government organizations and clinical care personnel that exist to help protect and improve
the health of their respective constituents.
Research Entities: Organizations that are engaged in or support healthcare research
including entities performing research, clinical trials or other research activities (e.g.,
National Institutes of Health, academic centers).
Sensitive Health Information (SHI): For the purposes of this document, SHI is
personally identifiable health information that is deemed by the individual (or their
designee) as requiring protections and particular care in its handling or dissemination that is
greater than the protections afforded other personally identifiable health information. What
information an individual considers to be sensitive is not necessarily the same set of
information that another individual considers sensitive, nor is it necessarily the same as the
information designated under HIPAA to be Protected Health Information (PHI).
Specialty Networks: Networks that are accessed directly by the PHR to feed information
into the PHR. These information providers may interface directly with participating entities:
i.e. healthcare entities, ancillary entities, laboratory, etc.
http://en.wikipedia.org/wiki/HIPAAhttp://en.wikipedia.org/wiki/HIPAA -
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Standards Development Organizations (SDO): Any entity whose primary activities are
developing, coordinating, promulgating, revising, amending, reissuing, interpreting or
otherwise maintaining standards that address the interests of a wide base of users outside
the standards development organization. HITSP is an example of an SDO.
Transmission: For the purposes of this document, transmission refers to uni-directional
communication.
http://en.wikipedia.org/wiki/Standardhttp://en.wikipedia.org/wiki/Standard