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###### PURPOSE OF MEETING

The purpose of the meeting was threefold: (1) to continue to discuss and
refine the draft "preconditions" statement; (2) to finalize the scope of
work functional areas; and (3) to continue discussion and refinement of
the Minimum Data Set (MDS). In addition, testimony was received from two
experts to begin addressing the feasibility of the MDS.

###### KEY TOPICS

####### 1. Testimony on the Feasibility of the Draft MDS 

Several persons with recognized expertise in public health
biosurveillance systems were asked to provide testimony on the draft
MDS. Two individuals were able to prepare testimony for this meeting.
Others were not able to meet the scheduling constraints and will submit
written testimony, which will be distributed to members.

**Farzad Mostashari, MD, MSc**, Assistant Commissioner for the Bureau of
Epidemiology Services, New York City Department of Health and Mental
Hygiene, had prepared a PowerPoint presentation; . Dr. Mostashari
acknowledged that the MDS was expected to be an on-going process, with
elements to be added as needed, or available, in the future. He noted
that the elements needed may vary by levels of authority. He assumed the
Steering Group was focusing on the needs at the Federal level but was
not endorsing a particular architecture.

Dr. Mostashari pointed out that the basic facility elements are easily
available to health departments and do not change frequently over time.
Therefore, it is not necessary to transmit these data in real time.

He suggested a distinction be made between elements routinely collected
and elements to be collected when triggered by an event. Unless the
information is needed on a daily basis, facilities should not be asked
to expend the effort to do this. Although many of the elements in the
daily summary are available for manual reporting, automated reporting is
not currently feasible. The cost of providing these data on an on-going
basis would likely be prohibitive.

Dr. Mostashari went on to say that the patient data elements (as well as
clinical elements) should be limited to information at the time of
admission, discharge, and transfer (ADT) and should not include
information on every event for each patient on a daily basis. Systems to
transmit this information are widely in place. He reviewed the privacy
issues and HIPAA guidelines pertaining to DOB and ZIP codes.

Clinical data elements are much less widely available than the patient
elements, noted Dr. Mostashari. Furthermore, the utility for all of the
measures has not yet been established, and establishing that utility
should be a prerequisite for inclusion in the MDS. For example, the
utility of nursing triage notes has not been demonstrated. In addition,
they are not generally available and their transmission introduces
concerns about the protection of privacy. In contrast, lab and radiology
elements are generally available, although their utility has not been
well established. A subset of these data, not all, should be defined for
the dataset. Radiology results are not usually available in a structured
format. In addition, the reporting of the laboratory and microbiology
elements would be a difficult, resource-intensive process. In
conclusion, Dr. Mostashari recommended that the Data Steering Group
consult with established standards bodies and identify the official
standards for each element. He acknowledged there may not be established
bodies for all of the elements in the draft dataset. He recommended
coordination with national and local laboratory reporting systems and
initiatives as well.

[**Shaun Grannis, MD,
MS**](http://www.regenstrief.org/Members/sgrannis/bio/view), Research
Scientist, Regenstrief Institute, Inc., Assistant Professor of Family
Medicine, Indiana University School of Medicine, explained the
PowerPoint slides he had prepared. Dr. Grannis co-chairs the HITSP
Biosurveillance Technical Committee. He described how the proposed MDS
would apply to the clinical information systems in operation among
hospitals in Indiana. The Indiana Network for Patient Care (INPC) is a
community-wide electronic medical record system that has been serving 17
hospitals since the mid-90s. All clinical results identified as
reportable to local or state public health authorities are automatically
delivered to the appropriate stakeholders using standards including
LOINC and HL7 v2. The Indiana Public Health Emergency Surveillance
System (PHESS) connects 67 of 114 hospitals to support a syndrome
surveillance component and an electronic laboratory and communicable
disease surveillance component using standards-based infrastructure.

Dr. Grannis based his feasibility review on: (1) whether each data
element is or is not currently being collected and (2) if it is being
collected, to what extent standards are available and used. Hospitals do
not transmit the elements in the daily facility summary report. A
customized outbound interface would have to be developed to transmit
daily census reports. According to Dr. Grannis, considerable additional
work to clarify and standardize the elements in the draft MDS is
required before interfacing can be undertaken. He concurred with Dr.
Mostashari that the base facility elements were readily available and
static. He also agreed that collecting both DOB and age was redundant
and raised privacy issues. The Indiana system has not needed a
pseudonymous identifier; however, it could be implemented were a need
identified.

Clinical data elements, such as temperature and pulse oximetry, are not
transmitted as part of the system in place in Indiana. In general, the
capture of these elements is highly variable. And much more
clarification is needed. In some systems, billing mechanisms, which
contain the diagnostic codes, are not tightly coupled to the ADT
interface. He went on to say that although the laboratory and radiology
test order elements are generally captured, they are not standardized.
Clinical results data have been standardized to a greater extent than
have orders or tests. Dr. Grannis noted that orders do not equal
results. For example, a hepatitis panel may be called the same thing in
many institutions, but the actual tests performed and results generated
may be different. He suggested adding an abnormal-normal flag for
results.

Moving on to the laboratory-microbiology category, Dr. Grannis reported
that the Indiana system incorporates clinical results exchanged using
HL7 v2 and results mapped to LOINC for public health reporting; however,
the elements delineated in the draft MDS lack clarity and specificity
(for example, specimen source, test status vs. report status). In
summary, he pointed out that implementation of the MDS will be
challenging. For those elements currently being collected, the challenge
is their standardization. The inclusion of elements not currently
collected must be justified in terms of their potential utility in
relationship to the considerable resources required for their collection
and acquisition.

In response to questions from meeting participants as to what, if
anything, was missing from the MDS, Dr. Mostashari believed the dataset
provides for an on-going, prospective surveillance system; what it does
not do is provide reach-back capacity for queries in the event of a
significant public health concern. Dr. Grannis reported that public
health users do not necessarily have access to the Indiana hospital
data. Those physicians who provide care within the INPC, and who are
also public health employees, have access for public health purposes.
The INPC is designed for patient care, not surveillance. However,
officials are currently working on policy and permission issues to
enable public health officials to reach back into the system to obtain
information necessary for surveillance.

####### 2. Summaries of the Results of Previous Meetings

The co-chairs requested approval for the summaries of the July 26 and
August 8, 2006 meetings. The summaries were approved pending receipt of
any additions or corrections to be e-mailed to staff. Subsequently, a
request was received from Eileen Koski and her organizational
affiliation was

corrected to Quest Diagnostics Incorporated.

####### 3. Work on the Draft "Preconditions"

Following the August 18 meeting, the co-chairs and staff revised the
preconditions and assumptions draft document. The Preconditions for
Deciding on Minimum Data Set Elements now consists of 14 preconditions,
of which numbers 11 through 14 were added after the August 18 meeting.
NACCHO policy has been incorporated as well.

Specific comments from members regarding the preconditions included:

-   #10 should be clarified to indicate that the capacity to receive
    data may not be present in all jurisdictions---a problem that is not
    within the scope of work of the Steering Group

-   #11 should apply beyond the emergency department

-   #12 should refer to "standard-based" elements.

-   There should be a mention of merging national standards as well as a
    recognition of investments being made at the local level.

Members also noted that architecture issues are not within the purview
of the Data Steering Group.

Members were asked to review the most recent draft and submit written
comments. The co-chairs will continue to refine and clarify the
preconditions document

####### 4. Classification of Functional Areas by Scope of Work

Members continued to work on classifying a list of 27 functions used in
the Public Health Information Network Preparedness project, work that
began at the July 26 meeting. Dr. Mostashari participated in the
discussion. A revised version of the spreadsheet, updated by staff to
include the results of decisions made at the August 18 meeting, was
circulated immediately prior to the meeting.

The following **decisions** resulted from an extensive discussion of
each of the functions, with "notes" to be included in the final product:

######### Outbreak Management

**Long term:** 7. Flexibility to support agent-specific and emerging
requirements while adhering to standard terminology and data
relationships. (This refers to system capability for adding questions to
aid in responding to an outbreak.)

######### Connecting Laboratory Systems

**Not in scope:** 3. Monitoring of testing activity to project load
distribution during a large-scale event.

######### Countermeasure and Response Administration

**Not in scope:** 1. Support and track administration of vaccinations
and prophylaxes.

**Short term:** 2. Support apportionment and allocation for limited
supplies.

**Not in scope:** 3. Traceability to drug lot, vaccinator, or clinic.

**Long term:** 4. Adverse events monitoring.

**Not in scope:** 5. Follow-up of patients (e.g., vaccine \"take\"
response evaluation).

**Not in scope:** 6. Isolation and quarantine monitoring and tracking.

**Long term (requires further evaluation):** 8. Integration with
immunization and disease registries.

######### Partner Communication:

**Not in scope:** 1. Rapid distribution of health alerts and
communications to public health workers, primary care physicians, public
health laboratory workers, the public, etc.

At the next meeting, members will review the cross functional functions
and notes, and they will finalize the MDS. Members were asked to review
the notes and to send additions and clarifications to staff for
incorporation into the next version

######## Staff task #1: Incorporate comments made during the discussion and reviewed via e-mail into the "notes" and update the spreadsheet.

####### 5. Minimum Data Set 

The most recent version of the cross walk of the draft MDS was
presented. This version had been updated to reflect the August 18
discussion and distributed to members by e-mail immediately prior to the
meeting. Dr.Barthell noted that the testimonies of Dr. Mostashari and
Dr. Grannis were instructive. He will incorporate their observations in
the next draft.

######### Base facility data elements

The members agreed with Drs. Mostashari and Grannis that these data are
static and could be obtained via a look-up table. They need not be
collected on an on-going basis.

######### Daily facility summary reports

The numbers for the ADT are expected to be acquired from census reports,
not calculated and entered by the reporting facility. Insofar as the
work of standards groups is available, standardized definitions will be
used. The Data Steering Group is not responsible for developing
standards.

######### Patient data elements

> It was agreed to collect either DOB or age, not both. The extent to
> which one would be easier for reporting facilities is not known. This
> will be noted in the comment section of the MDS. Also to be noted is
> the use of the three-digit ZIP code when necessary in order to protect
> privacy. One member noted that a pseudonymized data linker will not be
> available for most systems.

######### Clinical data elements

It was agree that although systems in use at most facilities may not
allow for the collection of nurses notes and vitals, these elements
should remain in the MDS and obtained when available. The issue of the
availability of diagnostic data must be examined.

> Discussion of the remaining components was deferred due to time
> constraints. Members were asked to send comments to Dr. Barthell, who
> will incorporate the comments into the next draft of the document.

####### 6. Next Steps 

Staff reviewed the timelines for the group's deliverables and suggested
several interim deadlines for completing the deliverables. Important
dates are:

September 14, 2006 1:30 - 4:30 p.m. Data Steering Group meeting

September 21, 2006 1:00 - 5:00 p.m. AHIC Biosurveillance Workgroup
*(Preliminary Recommendation)*

October 3, 2006 2:00 - 4:00 p.m. Data Steering Group meeting

October 17, 2006 1:00 - 4:00 p.m. AHIC Biosurveillance Workgroup *(Final
Recommendation)*

October 31, 2006 8:30 a.m. AHIC *(Final Recommendation to The
Community)*

Paula Soper requested that additional testimony be invited for the
September 14 meeting. The co-chairs agreed to allocate 30 minutes at the
next meeting to testimony from local health agencies.

######## Staff action item #2: Work with co-chairs to identify and invite testimony for the next meeting. Ensure that written testimony and other documents are circulated to members with sufficient time for review.

###### Public Comments

No members of the public requested the opportunity to comment.

###### SUMMARY OF RECOMMENDATIONS AND ACTION ITEMS

Testimony from two public health experts was heard and will be
considered by the group in its recommendations. The group continued to
refine three documents: "preconditions" and assumptions for including
elements in the MDS; functional areas classified by scope of work; and
the draft MDS. Staff, the co-chairs, and Dr. Barthell respectively will
revise the documents to include comments and decisions made during the
meeting and received by e-mail.

**The classification of the functional areas was completed with the
following decisions:**

######### Outbreak Management

**Long term:** 7. Flexibility to support agent-specific and emerging
requirements while adhering to standard terminology and data
relationships. (This refers to system capability to add questions to aid
in responding to an outbreak.)

######### Connecting Laboratory Systems

**Not in scope:** 3. Monitoring of testing activity to project load
distribution during a large-scale event.

######### Countermeasure and Response Administration

**Not in scope:** 1. Support and track administration of vaccinations
and prophylaxes.

**Short term:** 2. Support apportionment and allocation for limited
supplies.

**Not in scope:** 3. Traceability to drug lot, vaccinator, or clinic.

**Long term:** 4. Adverse events monitoring.

**Not in scope:** 5. Follow-up of patients (e.g., vaccine \"take\"
response evaluation).

**Not in scope:** 6. Isolation and quarantine monitoring and tracking.

**Long term (requires further evaluation):** 8. Integration with
immunization and disease registries.

######### Partner Communication:

**Not in scope:** 1. Rapid distribution of health alerts and
communications to public health workers, primary care physicians, public
health laboratory workers, the public, etc.

######## Staff task #1: Incorporate comments made during the discussion and reviewed via e-mail into the functional area "notes" and update the spreadsheet.

######## 

######## Staff action item #2: Work with co-chairs to identify and invite testimony for the next meeting. Ensure that written testimony and other documents are circulated to members with sufficient time for review

####### Meeting Materials:

1.  Draft Meeting Summaries (7-26- 2006 & 8-08-2006)

2.  Pre-Conditions -- Revised (8-31-2006)

3.  Functional Area Vote V2 -- Revised (8-24-2006)

4.  Minimum Data Set Worksheet- Revised (8-30-06)

5.  Calendar Revised (8-31-06)

6.  Scope of Work -- Revised Formatting (8-29-06)

7.  Next Phases -- Revised (8-24-06)

###### [Participants]{.underline}

> Marty LaVenture, PhD Denver Public Health Department
>
> Art Davidson, MD Minnesota Department of Health
>
> *Co-Chairs*
>
> Edward Barthell, MD American College of Emergency Physicians
>
> Eileen Koski, M.Phil. Quest Diagnostics
>
> Perry Smith, MD New York State Department of Health
>
> Lynn Steele, MS Centers for Disease Control and Prevention
>
> Bill Stephens, MD Southwest Center for Advanced Public Health Practice
>
> *Members*
>
>      
>
> Paula Soper NACCHO
>
> *Others*

 

> Kelly Cronin ONC
>
> Laura Conn ONC/CDC
>
> Scott Holter ONC/Bearing Point
>
> *ONC Staff*

**Disclaimer:** *The views expressed in written conference materials or
publications and by speakers and moderators at DHHS-sponsored
conferences do not necessarily reflect the official policies of the
DHHS; nor does mention of trade names, commercial practices, or
organizations imply endorsement by the U.S. Government*