**Oral Testimony at**

**Consumer Empowerment Workgroup Hearing**

**On Personal Health Records**

**July 27, 2006**

**James T. Canedy MD CHE**

**SimplyWell LLC**

**The Nebraska Medical Center**

**4242 Farnam St.**

**Omaha, Ne. 68131**

**402-559-6757**

Consumer awareness and engagement in Personal Health Records (PHRs)
requires education about the importance of individual health management
as well as aligning incentives to encourage utilization. US healthcare
delivery has traditionally used a disease treatment model where the
patient is a recipient of care rather than an active participant.

The PHR becomes the cornerstone of information sharing and patient
engagement. Business, federal government and individuals have identified
healthcare cost as a key economic concern. Financial incentives for
individual use of PHRs currently come from employers in the form of
reduced premiums, HSA contributions, and lower deductibles. Employers
are investing in this new technology to lower their overall healthcare
cost and early adopters are having measurable success. Tax credits for
businesses and individuals that make this investment would increase
adoption. Federal pilots of Medicare and Medicaid participants would
determine the success of this model in these populations.

The advantage of a PHR to the individual is dependent on the
functionality of the record and the tools and resources offered.
Converting a paper record to an electronic format alone will improve
safety and avoid duplication, but it will not engage the patient. A
dynamic PHR can offer integration of past health information,
recommended screenings, standardization, education, and home monitoring.
The patient will experience the benefit of increased compliance with
recommended health screens, a better interaction with their physician,
early diagnosis of disease, improved safety and lower costs.

SimplyWell currently has 20,000 active users in 49 states that touch
their record 2.4 times per month. The SimplyWell application is
populated through employer or insurance company eligibility files. Once
enrolled, the individual controls his or her PHR. The enrolled
participants are identified and measured for cost outcomes over time.
Actuarial reports have shown a greater than 1:1 return within the first
year and a 4:1 return by the fourth year. There has been a decrease in
cost for both low and high dollar claims. A retrospective review over a
four year period by the Department of Public Health at the University of
Nebraska has shown a statistically significant improvement in total
cholesterol, triglycerides, HDL, and hemoglobin. This group showed a
stable BMI over a four year period, a 14% decrease in sick days and 13%
decrease in hospital days over time. Self reported compliance with
annual physical exams, mammograms, prostate and colonoscopy screenings
have increased 15-50% over this four year period.

Requirements for the PHR were developed through focus groups. These
groups were established in 1998 and included insurance companies,
businesses, physicians, and patients. The information gained from the
patients told us to focus on availability, security, quality and content
of information with a patient centric model. The patient centric
approach required that the PHR be owned and controlled by the individual
and information only be released with their permission. It required an
automated release model under individual control. The record could not
be dependent on changes in insurance coverage, employment or personal
physicians. Availability required that information be accessed
continuously over a secure internet.

Security monitoring for the SimplyWell program has shown over 1,000
serious attempts per year to penetrate and no breach has been
encountered. Should a breach occur, information is held in separate
library look up tables, is double encrypted and not identified by
individual. Authentification is initially done using multiple unique
identifiers and then transfers to patient control with a unique user ID
and Password system. Temporary access with single use identifiers and
passwords can be generated by the patient for use by designated
individuals.

Information must appeal to the patient and be presented not only in
medical but in layman's terms. A traditional record includes past
medical history, medications, family history, allergies, surgeries,
immunizations, social history, and review of systems. The patient
centric approach requires a translation of this information into
layman's terms with explanations of the problem and individual
accountability. Laboratory information is currently integrated in the
SimplyWell PHR with similar explanation in common terms. Efforts are
underway for the integration of pharmacy, physician and hospital
records. Once the information is available to the patient in terms they
can understand, they own it and become engaged. This is the beginning of
patient involvement in their medical care.

Once a patient is engaged, the opportunity to offer self management and
behavior changes occur. The data held in the record and lab results
allows a customized and individual approach to risk management that is
not otherwise available. By knowing the family history, personal health
history, laboratory findings, and self reported risk factors, an
individual action plan can be customized for each patient including:
physician appointments, laboratory tests, verified learning, home
monitoring, preventive screenings and immunizations. It also allows
reminders to be sent by email and phone for compliance. We have chosen
to add a human voice to the process through an inbound and outbound call
center. Incoming calls are routed to a technical or medical expert.
Outgoing calls are offered to participants to help update the record and
offer assistance.

A minimum set of PHR elements will ensure standardization and quality of
future products that are developed. The earlier these standards are
formalized, the more likely we will see compliance by vendors. Standards
should include nomenclature, required data content, transfer
requirements for interoperability and transportability. Elements for a
successful PHR should be identified by those stakeholders who have
interest in the exchange of health information across the care continuum
including (but not limited to): patients, physicians, hospitals,
pharmacists, and payers, to name a few.

Successful PHRs can promote health literacy through verified learning
modules linked to the PHR. HIT literacy can be accomplished in a similar
fashion but the adoption of PHRs within a community is best accomplished
by community based education programs directed to all users/purchasers
of healthcare.

Interoperability can only be achieved through the use of common data
standards (HL7, SNOMED, etc.) This will allow interoperability and the
integration of information from different points of care. A set of
minimum standards should be established by the federal government or
some agent thereof, around which industry and vendors may develop
independent products that compete in the market. An example would be the
emission standards. Both Volkswagen and Cadillac must meet same
standards even though they offer very different products that appeal to
different consumers. The timing of integration is dependent upon the
development of the initial minimum standards. Interoperability between
PHRs and providers will not only require the use of health information
systems with common data standards but also a common data exchange in a
given community or region.

Certification will be necessary to maintain a minimum level of service
and []{.mark}interoperability. The timing is important for successful
growth. It may be prudent to start with voluntary standards using test
pilots and then move to mandatory standards with certification over the
next 10 years as the demand for PHRs increases.

In summary: We need to increase consumer awareness through education,
pilot demonstration projects and incentives for private business to
offer PHRs to their employees. Incentives need to be in place to drive
utilization and adoption of the PHR. Patients and physicians need to be
equally engaged in enrollment and information sharing to improve
preventive care and outcomes. Standards are critical for content,
functionality, interoperability, and long term sustainability.

SimplyWell would welcome the opportunity to participate in the process.

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