Are We Still on the Same Page State and National Surveillance Issues in the Era of Electronic Record

1
Are We Still on the Same Page?State and National
Surveillance Issues in the Era of Electronic
Records and Public Health Preparedness

• James L. Hadler, MD, MPH
• June 27, 2007

2
Outline of Talk

• Changing Forces Opportunities and Challenges to
  PHP-related Surveillance in Current Era
• Basics of PH Surveillance
• CSTE Blueprint State/Local National
  Surveillance
• PHP-related surveillance objectives methods
• Analysis of where we are with PHP surveillance
• Conclusions Recommendations

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PHP Surveillance Opportunities

• Electronic age development of electronic data
  systems for healthcare information.
• Enables
• Electronic laboratory reporting / Web-based
  reporting
• Capture of healthcare data within 24 hours of it
  being generated real time
• Promise of
• improved timeliness, completeness
• less work to report, receive and analyze reported
  data
• PHP funding extraordinary opportunity to
• support adoption of new technologies to help meet
  surveillance objectives
• improve all aspects of PHP-related surveillance

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PHP Surveillance Challenges

• Perceptions about current reporting system
• Under-reporting by clinicians - a crap-shoot
• No universal national reporting list states do
  what they want
• No control over what get at national level
• Interest from Homeland Security, HHS, White House
• Desire increased sensitivity timeliness,
  guaranteed information flow ideally, directly
  to national level
• Own ideas to assure will know of disasters
• Biowatch Realtime early event detection and
  situational awareness using electronic data
  syndromic surveillance and Biosense
• Perception that these systems are better
  willingness to divert a large amount of
  preparedness funding into realtime basket.

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Challenges (continued)

• Legislative Interest
• Hagel proposals - National reporting system
• PAHPA
• Assumes that have already developed systems to
  accelerate the timeliness and accuracy of
  detection and response
• Calls for DHHS to leverage advances in IT and
  information management to support faster, larger
  scale, more efficient and higher quality
  detection of, response to and recovery from
  public health emergencies.
• Electronic reporting and data capture hard to
  implement
• ELR in only minority of states
• CDC hesitation on further development of NEDSS
  base system PAMS

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Challenges (continued)

• Funding for PHP surveillance and epi capacity
  increasingly encouraged to be used for drills and
  exercises.
• Assumption that we now have these capacities
• No consistent recognition that natural events
  outbreaks, reports of diseases of concern are
  real life drills exercises that test
  surveillance systems and epi capacity many times
  per year.

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Possible Consequences of Challenges

• Lack of awareness recognition of positive
  attributes of current systems based on disease
  reporting.
• Lack of attention to improving current systems.
• Risk of discarding current surveillance methods
  in favor of realtime better methods without
  critical review.
• Hasty jump to new unproven systems rather than on
  defining surveillance objectives and working from
  there
• Confusion of surveillance methods with
  surveillance outcomes
• Too much invested in a single approach may result
  in loss of opportunity presented by PHP funding
  to truly improve surveillance via electronic
  reporting, NEDSS base system

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Possible Consequences (cont)

• Legislation that could undermine, not improve
  (even detract) from current surveillance
  capabilitie
• Development of PHP surveillance performance
  measures based on surveillance methods, not
  objectives
• Could include drills that dont count response
  to naturally occurring events
• Loss of credibility funding
• Current reporting system doesnt have high
  credibility
• Current scrutiny of Biosense, while welcome,
  could lead some to come to this conclusion.

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Conclusions of Talk

• We havent systematically applied basic
  surveillance principles to PHP-related
  surveillance at either state or national
  levels.
• We havent collectively developed objectives for
  PHP-related surveillance at either state or
  national levels
• Have made some progress, explored some new
  methods invested in harnessing advances in IT
  but lack of comprehensive approach leaves
  surveillance vulnerabilities.
• States arent on any collective page not the
  same page as federal government.
• CDC has at least 3 CCs involved but still
  hasnt fully coordinated
• At serious risk of most of the consequences if
  dont get our collective act together

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Basics of Public Health Surveillance
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Blueprint for Public Health Surveillance

• Developed by CSTE in 1994 to define the
  conceptual framework for public health
  surveillance for the 21st century
• Key points
• Surveillance goals sometimes differ at different
  levels of public health
• Surveillance methods should be matched to the
  goals
• Collaboration across all levels of public health
  is needed in the design of the NPHSS
• Funding needed to support each level

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Blueprint Surveillance Specifications for Any
Given Condition

• Justification for surveillance for that condition
• Goals of surveillance for that condition at each
  public health level
• Methods at each PH level
• Case definition
• Data to be collected
• Info system to be used to collect transmit data
• Temporary or permanent

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Local/State vs National Surveillance

• State/local
• Have authority to conduct jurisdiction-based
  surveillance and have state reportable disease
  lists
• Individual case verification, investigation
  response
• Outbreak identification, investigation response
• National
• Funding, system standards and support for
  collection of data from states to meet national
  surveillance objectives
• Interstate and international investigation
  control
• Both
• Monitor magnitude, epi, risk factors, trends
• Terrorism PHPrelated investigation and
  response
• Detection at state/local levels

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Surveillance System Attributes

• Surveillance systems to meet any give
  surveillance goals/objectives should be chosen
  with key attributes in mind and should be
  subsequently evaluated for these attributes.
• Timeliness
• especially for outbreaks, suspect BT cases, any
  condition where timely intervention is needed
• Sensitivity
• Completeness desired when cant afford to miss
  a case
• Specificity
• If too non-specific, can get too many false
  signals, spend too much time on verification ?
  drop surveillance method
• Usefulness does the system meet the objectives?

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PHP-Related Surveillance Goals and
ObjectivesConnecticut
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PHP Surveillance Goal and Objectives

• Overall Goal Have as sensitive timely systems
  as possible for detection of possible BT events
  outbreaks
• Broad Objectives
• Make current clinician lab systems more
  sensitive to BT agent detection, reporting as
  timely as possible
• Increase sensitivity timeliness of recognition
  of single cases of Category A BT agent disease
• Increase sensitivity timeliness of outbreak
  detection
• Develop potentially useful data-sources to
• Provide relevant information for rapid
  investigation intervention decision-making
  around other signals
• suspect BT case/outbreak reports environmental
  monitoring
• Help monitor large-scale public health events
  (e.g., influenza)

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Objective 1Improve sensitivity and timeliness of
all clinician and lab reporting

• Importance Recognition of something unusual
  most likely to come from clinicians and/or labs
  outbreaks often recognized by analysis of
  disease/lab reporting data.
• Possible Strategies
• Required easily carried out 24/7 clinician and
  lab reporting of reportable diseases/lab findings
• Electronic reporting systems
• Electronic laboratory reporting (ELR)
• Web-based clinician, hospital lab reporting.
• Automated reporting from EMR (future)

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Objective 2Increase sensitivity timeliness of
detection single cases of Category A BT agents

• Importance Early event detection. Category A
  agents have most potential to meet terrorist
  ends consequences of missing or delayed
  recognition of a single or first case are
  potentially huge one case is considered a
  possible outbreak meriting full investigation
  cant afford to wait for large-scale outbreak
• Possible Strategies
• Require 24/7 telephone reporting of Category A
  agents.
• Develop lab capacity to rapidly confirm
  diagnosis.
• Develop special surveillance efforts to detect
  and monitor course of individual cases of
  possible Category A disease e.g., rash with
  fever, gram positive rods
• Automated reporting from EMR (future)

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Surveillance for Anthrax

• Early diagnosis of anthrax is important

Ideal
Delayed lab diagnosis
Delayed pick-up by syndromic surveillance
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Observations from Inhalational Anthrax Case, CT
01
0
12hrs
48 hrs
72hrs
24 hrs
Report possible anthrax to State
Patient presents with sx. Blood culture taken
GPR on blood culture
Bacillus species identified
Potential 60 hour gap
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Potential Improvement in Timeliness of Reporting
of Anthrax to Public Health From GPR Reporting
0
12hrs
48 hrs
72hrs
24 hrs
Report possible anthrax to State
Patient presents with sx. Blood culture taken
GPR on blood culture
Bacillus species identified
Report possible anthrax to State
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• Goal detect persons with possible anthrax
  septicemia sooner
• Method Laboratories report immediately by
  telephone GPR findings on smear of growth from
  blood or CSF if w/in 24 hours of inoculation
  (2004)
• follow-up with MD if rapid growth
  in all bottles

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Insert picture of article evaluating our GPR
system or the poster for the ICEID
Important to evaluate surveillance systems
Emerging Infectious Diseases 2004111483-6
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(No Transcript)
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Objective 3Increase sensitivity timeliness of
outbreak detection

• Importance Outbreak of illness may be first
  manifestation of a BT event.
• Possible Strategies
• Make outbreaks of any kind individual cases of
  unusual disease officially reportable 24/7
• Publicize importance of MD civilian reporting
• ELR with automated analysis of reported case data
• Routine use of PFGE fingerprinting and sharing of
  information across state lines to identify
  clusters.
• Syndromic surveillance ED visits, hospital
  admissions, 911 calls, use of over-the-counter
  drugs
• Environmental monitoring (Biowatch, BDS)

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Foodborne Disease Outbreaksby Reporting Source
Connecticut, 2004-2006
Percent of Out breaks
Source of Report
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Median Time from First Illness Onset to DPH
Notification, Connecticut, 2004-2006
Report Source
Days
Etiology
Days
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NYC 3-yr ED evaluation study1ED Syndromic
SurveillanceOutbreaks Missed

• Low specificity of 138 spatial GI signals, none
  was associated with an outbreak
• Low sensitivity of 47 known GI outbreaks, 0
  detected
• Timeliness could not evaluate

1Balter MMWR 2005
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Objective 4Develop potentially useful data
sources for rapid investigation monitoring
(Situational Awareness)

• Importance Whenever have a possible problem,
  need to examine potential magnitude, geographic
  limitations and be able to monitor it.
• Possible Strategies
• Develop syndromic surveillance systems (may be of
  most use for this purpose)
• HAN contacts rapid communication with
  hospitals, labs, EDs, LTCF, ID physicians,
  veterinarians, neighboring states
• Other contacts - poison control, medical examiner
• Electronic reporting of deaths

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NYC 3-yr ED evaluation studyED Syndromic
Surveillance

• Some usefulness for situational awareness
• detected a citywide increase in GI illness after
  the Aug 2003 blackout2
• tracked seasonal trends in widespread common
  viral diseases GI illness (norovirus,
  rotavirus), influenza
• helped define extent of a foodborne outbreak

2 Marx AJPH 2005
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National and State PHP SurveillanceWhere are we
now ?
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Methods National Level

• Sent questionnaire to key contacts at 3 CDC
  centers CCID, COTPER and CCHIS f/u by
  telephone
• Is there a national list of PHP surveillance
  objectives?
• What is role of each center in PHP surveillance?
  In performance measure development?
• What is role of Washington agencies?
• To what extent is national surveillance dependent
  on state-based surveillance systems?
• Reviewed 2002 BT grant guidance and articles from
  national syndromic surveillance conferences

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Findings 1 National Level

• No national list of PHP surveillance
  goals/objectives
• Original 2002 Focus B guidance developed by CDC
  OD and NCID staff no longer involved in grant
• Although developed with surveillance objectives
  in mind, no formal or continuing list of
  goals/objectives developed
• No current high-level coordinating group across
  potentially involved/interested centers
• Is division of labor between COTPER and CCHIS
• Variable / Little involvement of CCID centers
  other than labs
• Performance standards being directed by HHS
  COTPER and CCHIS doing detail work

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Findings 2 National Level

• Disconnect between PHP funding for surveillance
  and response and naturally occurring diseases
  that are possible indicators of BT
• No systematic interest in evaluating means and
  timeliness of detection and response to natural
  cases of possible BT agents anthrax, plague,
  tularemia, vaccinia, foodborne disease outbreaks
• PHP resources not formally assigned to evaluate
  these surveillance systems
• CCID categorical programs dont feel can put
  pressure on states to use their PHP resources for
  surveillance evaluation and epi surge response
  (e.g., E. coli outbreaks)

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Findings 3 National Level

• Federal focus is on new electronic surveillance
  methods not on specific disease/condition
  objectives.
• development of standards for surveillance using
  electronic methods to enhance state-based
  surveillance
• development of electronic data sources for
  situational awareness i.e., Biosense
• Acknowledged dependence on states for disease /
• outbreak detection do not intend to change it
  even if Biosense fully developed
• Biosense more for situational awareness, no
  longer viewed by CDC as early event detection
  system.
• State-based syndromic surveillance only of modest
  importance at federal level for early event
  detection.

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State-Level PHP Surveillance

• States lack coordinated surveillance goals
• Each state fends for self if has surveillance
  goals, are self-developed.
• States have implemented systems they thought they
  should develop and implement based on
• original federal PHP grant guidance and funding
  support
• own ideas (e.g., NYC prior to 2001)
• No consistency among states in using PHP
  resources for outbreak investigations such as
  multi-state foodborne disease outbreaks.

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PHP Surveillance Achievements

• States have changed lists
• Laboratory surveillance capacity developed
• Rapid diagnostic capacity for Category A agents
  in all states
• PulseNet in all states
• Clinicians more aware of disease reporting and BT
  agents
• Some states have implemented ELR web-based
  reporting
• Syndromic surveillance has been tried, evaluated
  in some states and largely dismissed for early
  outbreak detection.

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Encouraging Developments

• CDC planning to restart internal surveillance
  coordination group CCHIS taking lead.
• Interest in having state representation
• CSTE involved with ISDS to do inventory of
  syndromic surveillance systems
• State representation in federal workgroups to
  develop EMRs to enhance surveillance through
  disease reporting
• CSTE working with CDC through AHIC to develop
  more standard National Notifiable Disease List
• CSTE countered Hagel national reporting proposal
  with its own surveillance proposal that has
  Congressional interest (including Hagels)

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Continuing or New Problems

• Biosense under Congressional scrutiny
• Not clear in what direction PHP funding is going
• CDC pondering getting out of software business
• NEDSS neglected in favor of Biosense
• PAMs will be exceptionally costly may not
  happen
• ELR not moving very quickly little expertise to
  make it happen in some states, need for CDC to
  make a priority
• Focus on development harnessing IT and
  information management to help surveillance
  continues without overall strategy based on PHP
  surveillance goals and objectives

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Conclusions and Recommendations
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Conclusions of Talk

• We havent systematically applied basic
  surveillance principles to PHP-related
  surveillance at either state or national
  levels.
• We havent collectively developed objectives for
  PHP-related surveillance at either state or
  national levels
• Have made some progress, explored some new
  methods invested in harnessing advances in IT
  but lack of comprehensive approach leaves
  surveillance vulnerabilities.
• States arent on any collective page not the
  same page as federal government.
• CDC has at least 3 CCs involved but still
  hasnt fully coordinated
• At serious risk of most of the consequences if
  dont get our collective act together

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Conclusions (continued)

• Under the guise of surveillance, are focused on
  methods without goals.
• Development of standards, interoperability,
  helpful Development of EMRs to enhance
  surveillance is critical but not the total
  answer to meeting current and future surveillance
  goals
• If syndromic surveillance is the answer, what is
  the question?

Reingold A, Biosecurity and Bioterrorism
Biodefense Strategy, Practice, and Science.
1(2)77-81.2003
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Recommendations

• Need to get our act together
• Need to have systematic, scientific approach to
  gain control of chaotic situation
• Need epidemiologic leadership and coordination at
  both national and state levels
• CDC form a high-level PHP Surveillance Group to
  coordinate across 3 coordinating centers
• Outcome set of national surveillance goals and
  objectives
• Should coordinate with states
• CDC or CSTE form a CDC-state group to define PHP
  surveillance outcome objectives at all levels and
  possible methods to achieve them.
• Inventory and evaluate impact on achieving goals
  of electronic other surveillance methods in
  current use

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Recommendations

• Treat all cases of disease due to Category A BT
  agents and all acute outbreaks as PHP
  surveillance and response drills.
• Direct PHP epi capacity toward response
• Evaluate means and timeliness of detection and
  response
• Use CEFO assignees to conduct the evaluations
• Consider involving the CEFO program in
  implementing all of these recommendations
• Make PHP surveillance funding decisions based on
  what works. New ideas and methods should be
  first tried on a small-scale, pilot level and
  evaluated before being widely implemented.

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Thank you!