8
Personal Health Records and Personal Health Record Systems
These and other benefits are not assured, however. To realize
the potential of PHRs and PHR systems to improve health
and healthcare, significant steps are needed in the areas
of privacy, security, and interoperability, in particular, as
recommended in this report. The Committee’s key findings
include the following:
n It is important to clarify the respective rights,
obligations, and potential liabilities of consum-
ers, patients, providers, and other stakeholders in
PHR systems.
n Consumers should have the right to make an
informed choice concerning the uses of their
personal information when signing up to use any
personal health record products or services.
n Security is a critical component of a PHR system,
especially if it is accessible via the Internet.
n The full potential of PHR systems will not be
realized until they are capable of widespread
exchange of information with Electronic Health
Records (EHRs) and other sources of personal and
other health data.
The Committee also identified broad areas for research and
evaluation for PHR systems. They include consumer, health
services, and technical research and the development of
metrics to assess the implementation and impact of PHR
systems on multiple dimensions of health and healthcare.
Most of the National Committee’s recommendations (which
are listed below and discussed further in the full report) are
directed to the U.S. Department of Health and Human
Services (HHS). Some also call for action by other federal
agencies, standards development organizations, PHR
vendors, health care organizations, and pilot project contrac-
tors. All the recommended steps require coordination among
stakeholders and between the public and private sectors.
They also require federal leadership. The Committee recom-
mends that, similar to its role in stimulating EHR adoption,
the Department encourage and actively participate in a
public/private partnership that facilitates standards-based
approaches to PHR systems in a harmonized legal and
regulatory environment across geopolitical boundaries.
NCVHS Recommendations on PHRs
and PHR Systems
Recommendations on Evolving
Terms and Practices
1: Consensus framework. NCVHS recommends that HHS
support the development of and promote public-private
consensus on a framework for characterizing personal health
record systems, building on this initial framework (see p.11).
2: Education. HHS and others should use the agreed-upon
framework as a basis for education efforts highlighting the
benefits and risks of various types of PHRs, aimed not only
at consumers and patients but also at healthcare providers
(e.g., physicians and nurses) and other stakeholders.
Recommendations on Privacy
3: Education about privacy. In any public education
program about PHR systems, HHS and other parties should
inform consumers about the importance of understanding the
privacy policies and practices of PHR system vendors,
including the enumeration of potential secondary uses
and disclosures of personally identifiable health information.
4: Best practices. HHS should identify and promote best
practices with respect to privacy policies and practices for
PHR systems, and models for plain language wording of
notices describing these policies and practices. These best
practices and models should also address translations into
other languages.
5: Privacy in HHS-sponsored activities. For any HHS-
sponsored pilot projects, and any contractual relationship
that CMS undertakes with entities intending to utilize CMS
data in PHRs, HHS should require that those PHR systems
provide advance notice to consumers of any uses or disclo-
sures of personally identifiable health information. In those
situations where HIPAA does not apply, uses or disclosures
of information in PHRs should not be allowed without the
express consent of the consumer.
6: Privacy in activities by entities not covered by
HIPAA. Entities not covered by HIPAA that offer PHR systems
should voluntarily adopt strict privacy policies and practices
and should provide clear advance notice to consumers of