# NHII 04 -- Personal Health Record Track

Co-chairs: David Lansky, PhD

Patricia Flatley Brennan, RN, PhD

**Background Material**

**Breakout Coordinators:**

-   David Lansky, PhD

-   Jonathan Wald, MD

**Invited experts:**

-   Wendy Angst

-   Gary Christopherson

-   Rev. Stephen Fulton

-   Linda Golodner

-   James Ralston, MD

-   Danny Sands, MD

**Reporters:**

-   Suzanne Bakken, RN, DNSc

-   Marc Boutin

### Proposed Goal State

> *From Charles Safran's 2003 summary of the Consumer Health Track:
> "Individuals have the information, tools, services and incentives to
> manage their own health and wellness throughout their lifetimes."*
>
> *2003 Vision: "Persons are the center of a US 'virtual health system'
> that optimally enables them to optimize their health.'"*

[Proposal for 2004 PHR Track]{.underline}: "Throughout their lifetimes,
all U.S. residents have full access to, and can manage to the extent
they desire, all information related to their health and health care,
from all sources of care and service. Consumers and health care
professionals contribute to personal health records, and have trust in
the information itself, confidence in its security, accuracy and
completeness, and full use of it to successfully manage personal health,
promote provider-patient collaboration and improve the safety and
effectiveness of health services."

### Recommendations from NHII 03 (Consumer Track)

*(see attached complete list)*

The 2003 Summit addressed several dimensions of consumer health and made
a number of wide-ranging recommendations. The 2004 Summit is only
considering the role of the Personal Health Record in support of the
NHII; for this reason we confine our attention to this subset of the
2003 consumer health recommendations:

-   Standards should include data elements relevant to consumers and
    patients

-   HHS should resolve patient identification issue

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-   NLM funds the development of reference terminology models,
    vocabularies and vocabulary management tools to support efficient
    access to clinical records and health information through consumer
    terminology

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-   HHS supports systems with diverse modules to address
    literacy/cultural variations

-   HHS develops metrics to monitor progress in personal health
    dimension

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-   NLM and private sector offer tools to link PHR with relevant
    information

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-   Funders prioritize medication management projects that include
    patients

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-   CMS supports demonstration with "patient centered remote information
    services"

-   AHRQ supports demonstration to educate consumers, patients and
    professionals about consumer health technology

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-   HHS encourages patient component in regional information networks

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-   NIH conducts initiative to improve communication between patients
    and providers

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-   A public/private partnership creates PHR systems and makes them
    freely available.

### Progress since July 2003

The following represents the expert assessment of progress towards the
goals identified above:

-   Standards should include data elements relevant to consumers and
    patients

Modest progress; HL7 functional model addresses patient requirements and
CCR has begun "PHR extension" process, but data [standards]{.underline}
activities do not yet reflect this work-in-progress. Few data standards
exist to address health information supplied by the patient (e.g.,
symptom reports, health behaviors, care preferences). Work is underway
to define a minimum data set for PHR.

-   HHS should resolve patient identification issue

We are unaware of relevant activity by HHS. The Connecting for Health
Digital Identity workgroup will release a paper in July 2004, which will
recommend a federated model for the local or regional construction of
patient identifiers based on commonly available personal information.

-   NLM funds consumer terminology

> *Selected groups, (e.g., Patrick at U Missouri) have proposed various
> strategies towards vocabulary development, including augmenting
> existing health care vocabularies with vernacular terms. No progress
> has been made in the development of vocabulary management tools that
> map between vernacular and formal terminologies. Work by NLM and the
> Healthwise Center for Information Therapy may provide additional
> resources.*

-   HHS supports systems with diverse modules to address
    literacy/cultural variations

> *We are not aware of focused HHS work beyond a January 2004 evidence
> review
> (http://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/contents.pdf).
> There is also significant academic work at Harvard Public Health
> (Rudd) and Johns Hopkins (Roter).
> (http://www.hsph.harvard.edu/healthliteracy/)*

-   HHS develops metrics to monitor progress in personal health
    dimension

NCVHS was doing something along these lines in mid-2003.

-   NLM and private sector offer tools to link PHR with relevant
    information

Several innovations at NLM and NCBI, like the 'local link out,' address
this issue. Group Health Cooperative has embedded Healthwise links into
the patient accessible EMR within the GHC patient Web portal (EpicCare's
MyChart). WebMD's Health Record links all technical content to resources
such as Medline plus, Multum, DHHS, and Healthwise. Palo Alto Medical
Group's Epic MyChart and Beth Israel Deaconess Medical Center's
PatientSite allow patients to see their test results online and link
those results to explanatory information about them.

-   Funders prioritize medication management projects that include
    patients

> *We are not aware of [funder]{.underline} activity (AHRQ, NIH, CMS,
> RWJF, etc.) but there are a number of private sector initiatives that
> address patient requirements, including SOS Rx, EHI Incentives report,
> AARP WiseUse program, Walgreen's, MedcoHealth, and Surescripts
> programs. Of these, SOSRx is the most strongly associated with
> involvement of patient advocates in design.*

-   CMS supports demonstration with "patient centered remote information
    services"

We are unaware of CMS activity in this area. Private sector activity
includes work within Intel and some of the Smart Home projects at
Georgia Tech and at Rochester. {I thought the VA's Health-e-Vet program
was doing some of this?}

-   AHRQ supports demonstration to educate consumers, patients and
    professionals about consumer health technology

We are unaware of AHRQ activity; NLM has had outreach in this area.

-   HHS encourages patient component in regional information networks

None of the first-round LHII projects include a significant patient
component; some current NLM projects have this focus.

-   NIH conducts initiative to improve communication between patients
    and providers

> *NCI has conducted research in this area. The RWJF e-health initiative
> program for 2004 focuses on evaluating provider-offered patient
> portals.*

-   A public/private partnership should create PHR systems and make them
    freely available.

We are unaware of such activity at present.

### Proposed recommendations for discussion

We advance two sets of recommendations: those that address policy and
communication issues, and those that advocate for demonstrations.

-   [Policy and Communication Priorities]{.underline}

-   Develop a messaging and branding strategy to increase uniform public
    and professional understanding of PHR.

-   Conduct an aggressive effort to develop and implement a mechanism
    that permits accurate integration of an individual's complete health
    record (e.g., patient identification algorithm)

-   Insure consideration of consumer perspectives in regulation and
    implementation of personal health records through:

-   Consumer representation on NCVHS and other relevant bodies

-   Increased opportunities for consumers to present testimony to IT
    standards and policy bodies

-   *Note:* identification of consumers for these activities should
    occur in collaboration with selected consumer groups as well as
    through election of individuals known to be active participants and
    early adopters of PHRs.

-   Develop standard templates for selected health system transitions
    (building upon CCR activity)

-   Develop mechanisms for patient access to personal health records
    that ensure equitable access for all people across diverse platforms
    and in diverse environments, recognizing the wide range of technical
    knowledge and skills and information self-efficacy across the U.S.
    population.

-   [Demonstration projects]{.underline}

> We envision four short-term opportunities and would ask the NHII
> Summit participants to debate and then recommend at least one for
> early adoption efforts:

1.  Personal Medication List -- a complete enumeration of all prescribed
    substances

    a.  There could be a good financial case made here, and with about
        50% of adults on some kind of prescription medication this would
        make sense

    b.  Builds on Medicare Modernization Act implementation

    c.  Challenges in each arena: identifier, standards, access,
        HIPAA/legal, business model, evaluation criteria, interface to
        EMR, etc.

    d.  E-prescribing transaction conduits (e.g., Zix Corporation) and
        hubs (e.g., RxHub, SureScripts) have access to dispensed drug
        history information and could provide this to patients as they
        are doing for physicians linked to certain initiatives

2.  Implement standard intake/history/health summary forms and visit
    records as common tools for use by all electronic health record
    applications:

    a.  CCR standard could provide model

    b.  May be difficult to stimulate general adoption

    c.  Adoption of a minimum data set, much like UHDSS, is necessary

3.  Create community-wide demonstrations of PHRs within existing,
    successful LHIIs

4.  Conduct a pilot with CMS to establish a free PHR for every new
    Medicare beneficiary who receives an initial risk assessment and
    exam, per the Medicare Modernization Act.

## "Relevant" recommendations from Jon Wald's section, 2003

(note that the Consumer Health Track was broader than 2004 PHR focus, so
I've only referenced ones I thought relevant to 2004)

## Data interoperability

-   Standards should include data elements relevant to consumers and
    patients

-   HHS should resolve patient identification issue

## Electronic communication and data sharing

-   NLM funds consumer terminology

-   FCC encourages broadband to the home

-   Define lowest common denominator platform for NHII access

## Information management by consumer

-   NCVHS includes consumer representatives

-   HHS supports consumer health literacy training

-   HHS supports systems with diverse modules to address
    literacy/cultural variations

-   HHS develops metrics to monitor progress in personal health
    dimension

## Relevant health information

-   NLM and private sector offer tools to link PHR with relevant
    information

## Patient safety

-   Involve patients directly in AHRQ patient safety initiatives

-   Funders prioritize medication management projects that include
    patients

## Demonstration projects

-   CMS supports demonstration with "patient centered remote information
    services"

-   AHRQ supports demonstration to educate consumers, patients and
    professionals about consumer health technology

## Consolidated research agenda

-   HHS encourages patient component in regional information networks

-   NIH conducts initiative to understand patient needs and preferences

-   NIH conducts initiative to improve communication between patients
    and providers

***Additional recommendations from Safran group:***

-   Public/private partnership creates "consumers union" that bridges to
    individual capabilities

-   Public/private partnership creates PHR systems and make them freely
    available.