HIV Reporting: Oregons NametoCode System for County Health Departments

1
HIV Reporting Oregons Name-to-Code Systemfor
County Health Departments

• HST Program
• Oregon Health Division
• Department of Human Services

2
Why expand HIV reporting?

• Systematically obtain information about the
  entire population of HIV-positive persons, in
  order to
• Better understand all stages of the HIV epidemic
• Plan and coordinate care and prevention services
• Facilitate access to care and prevention services

3
Implementation Objectives

• Assure the availability of anonymous testing
• Assure a confidential and secure data system
• Strengthen medical privacy laws
• Assure that all components of the reporting
  system (labs, county health departments and
  clinicians) are trained
• reporting requirements (all)
• confidentiality laws and assurances (all)
• medical care guidelines (clinicians)
• Increase access to HIV testing

4
Oregon Name to Code HIV Case Reporting

• The decision to expand reporting followed a three
  year process and four public hearings
• A community Advisory Group provides oversight in
  implementation
• Implementation date is Oct 1, 2001
• 34 states report HIV by name and retain the name
• Two other states have name-to-code systems, which
  convert the name to a unique code
• Washington
• Maine

5
New HIV Case Reporting

• Oregon Administrative Rules 333-019-0223
• (1) Reporting of AIDS
• (a) Each case or suspected case of AIDS shall be
  reported to the local health department, or to
  the Division if specified by the local health
  department within one week from the time of
  identification
• (2) Reporting of HIV.
• (a) Each case or suspected case of HIV infection
  shall be reported to the Division within one day
  from the time of identification

6
New HIV Case Reporting Investigation of Cases

• (b) Investigation of HIV Cases.
• (A) Investigations of HIV cases shall be
  conducted to the extent that resources permit.
  The local health department, or the Division at
  the request of the local health department, will
  assure that each identified case is referred to
  prevention and care services, encouraged to
  contact his or her sexual partners and
  needle-sharing partners of their potential
  exposure, and inform partners of the availability
  of counseling and HIV testing services

7
New HIV Case Reporting Investigation of Cases,
cont.

• b) Investigation of HIV Cases (cont).
• (B) After completion of the case investigation,
  but in no instance more than 90 days after
  receipt of a report, the Division shall create an
  encrypted unique alphanumeric code for each case
  from the patient's name or the necessary letters
  of the name and other information contained on
  the case report. This code shall be substituted
  for the patient's name on all case-related
  reporting information retained by the Division
  and local health departments. The patient's name
  shall not be retained by either the state or
  local health department except as authorized by
  the patient for the purposes of providing
  HIV-related services to the patient.

8
Consent for HIV Testing

• Providers must assure that the person being
  tested for HIV has given informed consent (either
  verbal or written). This should include the
  requirement for reporting of HIV positive results
  by name to OHD.
• Informed consent is documented by a state form
  that must accompany the HIV lab slip and test
  sample.
• In addition, a model written consent form is
  available from the Health Division. (This form is
  optional.)

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Anonymous Testing
10
Definitions

• Anonymous Testing
• No name is collected. If the test result is
  positive, the patient is NOT asked for his/her
  name. The result is reported anonymously. This
  option is available at all publicly funded HIV
  counseling and testing sites.
• Confidential Testing
• The person is tested using his/her name. This
  is kept in a secure location which protects
  confidentiality. A positive test is reportable by
  name.

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Anonymous HIV Testing Will be Available at
Public-Funded Sites

• Anonymous HIV testing will continue to be
  available at local health departments.
• All persons testing at public HIV testing sites
  must be informed of the anonymous test option.
• A persons name is not reported if the anonymous
  test is positive.

12
OHD/County HD Assurances Anonymous Testing

• HIV PREVENTION COUNSELING, TESTING AND REFERRAL
  SERVICES
• 3. HIV counseling, testing, and referral services
  will be voluntary and be available in both
  confidential and anonymous formats in each
  county. Every client will be informed of the
  anonymous HIV testing option.

CLHO Approved Feb, 2001
13
Confidentiality
14
Assurances Confidentiality of Data and Medical
Information

• 1. The county health department and/or its
  sub-contractor(s), may not keep/retain
  information regarding an individuals
  HIV-positive status on file without the existence
  of an established client with service provider
  relationship. This relationship, at a minimum, is
  defined as the provider having engaged in an
  interview or dialog with the client that results
  in a specific client record being developed
  relative to prospective services available to the
  client.

CLHO Approved Feb, 2001
15
Assurances Confidentiality of Data and Medical
Information (cont.)

• 2. All material related to the program which
  contains client names or other identifying
  information must be maintained in a locked and
  secure area/cabinet which allows access only to
  authorized personnel. Counties must assure that
  all personal computers and data programs that
  contain client information have restricted
  access.

CLHO Approved Feb, 2001
16
Assurances Confidentiality of Data and Medical
Information (cont.)

• 3. Breaches of confidentiality are serious and
  require immediate action. Therefore, all known
  and alleged breaches of confidentiality will be
  evaluated by county supervisory or administrative
  staff, and the process and resolution documented.
  All confirmed breaches of confidentiality will
  result in appropriate sanctions as directed by
  county policy and procedure and all applicable
  Oregon Administrative Rules (OAR) and Statutes
  (ORS). The nature of confirmed breaches of
  confidentiality will be reported to the Oregon
  Health Division within 14 days from the date of
  evaluation by the county.

CLHO Approved Feb, 2001
17
Assurances Confidentiality of Data and Medical
Information (cont.)

• 4. All county health departments will have a
  written policy and procedure regarding a breach
  of confidentiality. Such policy will detail the
  consequence to the employee (paid or volunteer)
  for a verified breach of confidentiality.

CLHO Approved Feb, 2001
18
Assurances Confidentiality of Data and Medical
Information (cont.)

• 5. All county health departments will maintain
  documentation of an annual review of county,
  state, and federal requirements regarding the
  confidentiality of client-level information.
  Employees who, in the course of performing their
  job, have access to client-level information will
  have an annual confidentiality review and by
  his/her signature acknowledge understanding of
  the information.

CLHO Approved Feb, 2001
19
Assurances Confidentiality of Data and Medical
Information (cont.)

• SUBCONTRACT AGENCIES
• Local county health departments will assure that
  authorized subcontracting agencies will follow
  all relevant assurances for subcontracted
  services.

CLHO Approved Feb, 2001
20
Assurances Confidentiality of Data and Medical
Information (cont.)

• HIV PREVENTION COUNSELING, TESTING AND REFERRAL
  SERVICES
• 12. The identity of any individual served by the
  program will not be released to anyone without
  the written consent of the individual, except
  when otherwise required by county, state, or
  federal statute or regulation. A written copy of
  the confidential HIV test results can be released
  to the individual tested only by request of the
  client, after the client or an authorized
  representative has signed an appropriate release.

CLHO Approved Feb, 2001
21
Confidentiality of HIV Medical Information

• ORS 433.045 prohibits the release of HIV related
  medical information without the specific
  authorization of the patient.
• This release is not covered by the general
  release of information signed by all patients
  when they enter care.

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The Reporting Process
23
OHD Data and Evaluation Section
Receive AIDS and HIV reports (with names)

• Check registry for previous report
• If new case, obtain case report from provider
• Complete follow-up of case
• Facilitate referrals to care and prevention
• If AIDS case previously reported as HIV,
• convert to AIDS case (by name)
• If new HIV (non-AIDS), convert name to UI
• delete name

Information match with UI only
24
Practical Steps in Response to Report from a
Private Lab or Clinician to the County Health
Department

• Thank clinician for the call.
• Take name and number of clinician and notify
  OHDs HST Program.
• Tell clinician that HST will contact them to
  obtain the case report.
• Inform clinician of the HIV case management
  services available at the county.
• Remind clinician of the HIV prevention needs of
  persons living with HIV.

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Practical Steps to Assure Confidentiality

• Orientation for all new personnel regarding
  confidentiality policies and procedures.
• Periodic (at least annual) training for all staff
  and volunteers regarding legal and ethical
  mandates to maintain privacy of medical and
  personnel information.
• Swift and objective evaluation of any potential
  breaches of confidentiality.
• Clear consequences related to a confirmed breach
  of confidentiality.

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Partner Notification and Referral

• All newly diagnosed persons should be encouraged
  to notify sexual and needle sharing partners.
• This can be accomplished in three ways
• The client commits to notifying all sexual or
  needle sharing partner.
• Notification can be done by the clinician or
  his/her designated staff at the request of the
  client.
• Disease Intervention Specialists, public health
  professionals trained to do contact notification
  and referral for testing, are available to assist
  in notifying partners. This can be arranged
  through OHD or the local county health department.

27
Oregon HIV ReportingName-to-Code
SystemQUESTIONS
28
Scenario A1

• A person tests anonymously through a local health
  department (LHD) and returns to the LHD for
  post-test counseling and test results.
• Process
• If the HIV antibody test is positive, the
  counselor provides referrals to care services
  during post-test counseling.
• The test result is entered into the anonymous
  testing database.
• The clients name is never entered on a document
• The client should be informed that his case must
  be reported by the provider when he/she enters
  care, but the name will be converted to a UI as
  soon as the case report is completed.

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Scenario C1

• A confidential HIV test is submitted by a local
  health department (LHD) counseling and testing
  service (CTS) site to the Oregon Public Health
  Lab (OPHL). The test is positive.
• Process
• OPHL calls the HIV Data Analysis Section to tell
  them there is a positive HIV test from a specific
  LHD.
• OPHL will provide the HIV Data Analysis Section
  with the lab ID number, date of test, and other
  demographic and risk history information for the
  client. OPHL will not have the clients name on
  the lab slip or specimen.
• Someone from the HIV Data Analysis Section will
  call the reporting person or a specified contact
  person at the LHD to get the HIV persons name
  to complete the case report and will determine if
  the patient is using or has been referred to case
  management or care services.

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Scenario C1 (continued)

• If the LHD has not been able to contact the HIV
  person to inform him/her of the result, OHD and
  the LHD will develop a plan to locate the person
  for post-test counseling and referral to care.
• After the HIV Data and Evaluation Section knows
  that the HIV person has been referred to care,
  the name of person will be changed to an unique
  identifier (UI) and will be deleted from the
  database.
• Even if follow-up remains incomplete after 90
  days, the name of the HIV person is changed to a
  UI and deleted from the database.

31
Scenario L1

• A private laboratory calls the LHD to report an
  HIV test result.
• Process
• The LHD thanks the lab for calling, takes the
  number of the contact person, and notifies OHDs
  Data and Evaluation Section.
• OHD contacts the lab to get the clients name and
  provider information.

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Scenario L1 (continued)

• OHD contacts the provider and completes the case
  report and follow-up.
• After follow-up is complete the name of the HIV
  person is converted to a unique identifier (UI)
  deleted from the database.
• Even if follow-up remains incomplete after 90
  days, the name of the HIV person is changed to a
  UI and deleted from the database.

33
Scenario P1

• A clinician calls the LHD to report an HIV
  person.
• Process
• The LHD thanks the provider for calling and tells
  the clinician that the HIV Data and Evaluation
  Section will call to take the case report.
• Take the clinicians name and phone number and
  notify OHD to take the report.

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Scenario P1 (continued)

• OHD contacts the clinician and completes the case
  report and follow-up.
• If the clinician has not been able to contact the
  HIV person to inform him/her of the result, OHD
  and the clinician may agree that public health
  will attempt to notify him/her. In this case,
  OHD will contact the LHD to determine the best
  way to contact the person.

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Scenario P1 (continued)

• After follow-up is complete the name of the HIV
  person is converted to a unique identifier (UI)
  deleted from the database.
• Even if follow-up remains incomplete after 90
  days, the name of the HIV person is changed to a
  UI and deleted from the database.