[Med-privacy] CU on NHIN

Thu, 5 Jan 2006 14:31:26 -0800

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Designing the National Health Information Network

Patient and Consumer-focused Principles

Modern health care depends upon accurate, timely, understandable, and=20
relevant information. Complete and useful information needs to be in=20
the hands of patients, families, professionals, and health system=20
managers to improve individual health, the performance of the health=20
care system, and the nation=92s well-being.

New technologies, networks, and organizations are emerging to provide=20
greater electronic connectivity and data exchange. To ensure that our=20
personal health information is used appropriately, to protect privacy,=20=

and to create a climate of public trust, all of the many custodians of=20=

our health data should adhere to a set of fundamental principles.

A properly planned information environment may achieve these functions=20=

without central databases, or new physical networks. Though referring=20
to a =93network,=94 the principles presented here describe the essential=20=

attributes of any approach to improving information connectivity in=20
health care.

  Information access and control

=95 People must have the ability to control who has access to their=20
personal health information over an electronic health network - either=20=

directly or through the action of a designated proxy [or by choosing=20
not to exercise that control]. This control can be exercised in whole=20
or only with regard to selected elements of their personal health=20
information.

=95 At a minimum, the structure and rules of health information networks=20=

must facilitate the ability of people to exercise their personal health=20=

information rights under the federal privacy regulation mandated by the=20=

Health Insurance Portability and Accountability Act (HIPAA).

=95 If people fear inappropriate disclosure and do not trust an=20
electronic network, they may become less willing to seek care or=20
provide consent to share even that information to which they otherwise=20=

would allow access.

=95 People should have the ability to review who has had access to their=20=

personal health information. Each individual or entity accessing=20
personal health information over the network should possess a unique=20
digital signature, through which patients can have access to a=20
standardized profile of the entity or individual reviewing their PHI.

=95 No personal health information should be available to a provider or=20=

health professional that is not also available to the person it=20
describes (with exception for cases of danger to the patient).

=95 People must be able to supplement or annotate their personal health=20=

information.

=95 Unreasonable or unaffordable fees should not impair the ability of=20=

each person to access, review or supplement their personal health=20
information on the NHIN.

=95 People must be able to request correction of their personal health=20=

information and receive a timely response to the request.

=95 The NHIN must provide a sound method for allowing secure access and=20=

authenticating individual patient users that does not require physician=20=

or institutional mediation.

=95 People must have the ability to designate (and withdraw designation=20=

from) proxies who have full authority to manage their personal health=20
information on the network.

=95 People must be able to choose whether or not their information is=20
shared across the network =96 in whole or in part - at any time, without=20=

coercion or pressure.

Disclosure and accountability

=95 Before a provider initiates a transfer of personal health =
information=20
through the exchange, affected individuals should fully understand the=20=

policies in place and the possible uses of that information.=20
(First-time disclosure is sufficient for subsequent transactions.)

=95 Information elements central to network functioning, such as=20
identifiers, authorizations and permissions, access histories, and=20
index entries, must be presented in easily understood terms and formats=20=

to patients, consumers, and other authorized users for their review and=20=

possible correction or control.

=95 People should be informed of the ways their information may be used=20=

and must be able to choose whether to make their personal health data=20
available for such use in various systems.

=95 Communications with people about the uses of and policies affecting=20=

their electronic health information must be conducted in simple, easily=20=

understood language.

=95 States should adopt common operating standards for data security and=20=

patient privacy protection, including established clearly described=20
penalties for violations not covered by HIPAA (such as identity theft),=20=

and an accountable means for monitoring and prosecution of violations.

=95 People must be able to receive complete paper copies of any of their=20=

information available across the national network.

  Functionality

=95 The NHIN must provide the capability for people to reliably and=20
securely move all or portions of their personal health information from=20=

one health care entity to another.

=95 The NHIN should permit the aggregation of data (without patient=20
identifiers) in support of quality measurement, provider and=20
institutional performance assessment, prescription drug monitoring,=20
patient safety, public health and other public interest objectives.

=95 Non-identifiable data sets generated from the NHIN should not be =
used=20
for insurance underwriting or other commercial applications intended to=20=

provide preferential pricing or services to one group over another.=20
Preferential pricing would not include differential payment to=20
providers in recognition of quality performance.

=95 Implementation of NHIN must be accompanied by a significant public=20=

education program so that people understand the value of the network,=20
its privacy and security protections, how to participate in it, and the=20=

rights and benefits afforded to them.

=95 The NHIN must permit patients to transmit information to their =
health=20
care providers as well as receive information from them.

  Governance

=95 Consumer and patient advocates must be represented on an equal=20
footing in the governance and advisory structure of all regional and=20
national NHIN authorities, including standard-setting and operational=20
entities.

=95 The governance and administration of the NHIN must be public,=20
transparent, and accountable.

ENDORSEMENTS BY ORGANIZATIONS
  These Consumer and Patient-Focused Principles are endorsed by the=20
following organizations:
  AARP
  ACOR =96 Association of Cancer Online Resources
  AFL-CIO
  American Hospice Foundation
  Center for Medical Consumers
  Consumers Union
  Families USA
  Health Privacy Project
  International Association of Machinists and Aerospace Workers
  Maternity Center Association
  National Coalition for Cancer Survivorship
  National Consumers League
  National Partnership for Women and Families
  SEIU =96 Service Employees International Union

=A0

=A91998-2005 Consumers Union

=A0=

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<bold><fontfamily><param>Helvetica</param><x-tad-smaller>Designing the
National Health Information Network

Patient and Consumer-focused Principles

Modern health care depends upon accurate, timely, understandable, and
relevant information. Complete and useful information needs to be in
the hands of patients, families, professionals, and health system
managers to improve individual health, the performance of the health
care system, and the nation=92s well-being.

New technologies, networks, and organizations are emerging to provide
greater electronic connectivity and data exchange. To ensure that our
personal health information is used appropriately, to protect privacy,
and to create a climate of public trust, all of the many custodians of
our health data should adhere to a set of fundamental principles.

A properly planned information environment may achieve these functions
without central databases, or new physical networks. Though referring
to a =93network,=94 the principles presented here describe the essential
attributes of any approach to improving information connectivity in
health care.

 Information access and control

=95 People must have the ability to control who has access to their
personal health information over an electronic health network - either
directly or through the action of a designated proxy [or by choosing
not to exercise that control]. This control can be exercised in whole
or only with regard to selected elements of their personal health
information.

=95 At a minimum, the structure and rules of health information networks
must facilitate the ability of people to exercise their personal
health information rights under the federal privacy regulation
mandated by the Health Insurance Portability and Accountability Act
(HIPAA).

=95 If people fear inappropriate disclosure and do not trust an
electronic network, they may become less willing to seek care or
provide consent to share even that information to which they otherwise
would allow access.

=95 People should have the ability to review who has had access to their
personal health information. Each individual or entity accessing
personal health information over the network should possess a unique
digital signature, through which patients can have access to a
standardized profile of the entity or individual reviewing their PHI.

=95 No personal health information should be available to a provider or
health professional that is not also available to the person it
describes (with exception for cases of danger to the patient).

=95 People must be able to supplement or annotate their personal health
information.

=95 Unreasonable or unaffordable fees should not impair the ability of
each person to access, review or supplement their personal health
information on the NHIN.

=95 People must be able to request correction of their personal health
information and receive a timely response to the request.

=95 The NHIN must provide a sound method for allowing secure access and
authenticating individual patient users that does not require
physician or institutional mediation.

=95 People must have the ability to designate (and withdraw designation
from) proxies who have full authority to manage their personal health
information on the network.

=95 People must be able to choose whether or not their information is
shared across the network =96 in whole or in part - at any time, without
coercion or pressure.

Disclosure and accountability

=95 Before a provider initiates a transfer of personal health
information through the exchange, affected individuals should fully
understand the policies in place and the possible uses of that
information. (First-time disclosure is sufficient for subsequent
transactions.)

=95 Information elements central to network functioning, such as
identifiers, authorizations and permissions, access histories, and
index entries, must be presented in easily understood terms and
formats to patients, consumers, and other authorized users for their
review and possible correction or control.

=95 People should be informed of the ways their information may be used
and must be able to choose whether to make their personal health data
available for such use in various systems.

=95 Communications with people about the uses of and policies affecting
their electronic health information must be conducted in simple,
easily understood language.

=95 States should adopt common operating standards for data security and
patient privacy protection, including established clearly described
penalties for violations not covered by HIPAA (such as identity
theft), and an accountable means for monitoring and prosecution of
violations.

=95 People must be able to receive complete paper copies of any of their
information available across the national network.

 Functionality

=95 The NHIN must provide the capability for people to reliably and
securely move all or portions of their personal health information
from one health care entity to another.

=95 The NHIN should permit the aggregation of data (without patient
identifiers) in support of quality measurement, provider and
institutional performance assessment, prescription drug monitoring,
patient safety, public health and other public interest objectives.

=95 Non-identifiable data sets generated from the NHIN should not be
used for insurance underwriting or other commercial applications
intended to provide preferential pricing or services to one group over
another. Preferential pricing would not include differential payment
to providers in recognition of quality performance.

=95 Implementation of NHIN must be accompanied by a significant public
education program so that people understand the value of the network,
its privacy and security protections, how to participate in it, and
the rights and benefits afforded to them.

=95 The NHIN must permit patients to transmit information to their
health care providers as well as receive information from them.

 Governance

=95 Consumer and patient advocates must be represented on an equal
footing in the governance and advisory structure of all regional and
national NHIN authorities, including standard-setting and operational
entities.

=95 The governance and administration of the NHIN must be public,
transparent, and accountable.

ENDORSEMENTS BY ORGANIZATIONS

 These Consumer and Patient-Focused Principles are endorsed by the
following organizations:

 AARP

 ACOR =96 Association of Cancer Online Resources

 AFL-CIO

 American Hospice Foundation

 Center for Medical Consumers

 Consumers Union

 Families USA

 Health Privacy Project

 International Association of Machinists and Aerospace Workers

 Maternity Center Association

 National Coalition for Cancer Survivorship

 National Consumers League

 National Partnership for Women and Families

 SEIU =96 Service Employees International Union

=A0

=A91998-2005 Consumers Union

=A0</x-tad-smaller></fontfamily></bold>=

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