Opportunities and Challenges for HIV and STD Data Sharing: Data to Care Realities PLENARY 4 11/28/2017 Julie Arena, J.D. Health Program Specialist, CDPH Office of AIDS Will Wheeler, Ph.D., MPH Clinical Informatics Specialist in the Prevention Research and Evaluation Section, CDPH Office of AIDS
Learning Objectives: Clarification of HIV reporting requirements and proposed changes for 2018 Discuss authority and processes for use of HIV data for program action, within and between HIV and STD programs and local health jurisdictions Define public health needs for data sharing Assess data sharing barriers and explore potential solutions
Overview of Presentation: Part One Julie Arena Laws on Reporting HIV: specific methods and timelines required. Examples of reporting. Laws authorizing communication with other local health departments for care coordination and case management. Examples of data sharing between counties. Part Two Will Wheeler Local Health Jurisdiction issues with data sharing and reporting: NEEDS CONSTRAINTS SOLUTIONS Next steps going forward
Regulations on HIV Reporting: Title 17 CA Code of Regs (CCR) 17 CCR 2500, 2505, 2643.5-.15 2500 Health care provider reporting for all reportable diseases (includes STDs, HIV stage 3 (AIDS), and HIV acute infection) 2505 Lab reporting for all reportable diseases (includes STDs and HIV acute infection) 2643.5 Health Care Provider reporting of confirmed HIV to the Local Health Officer 2643.10 Lab reporting of confirmed HIV to the Local Health Officer 2643.15 Local Health Officer reporting of confirmed HIV to the State
In 2018, Office of AIDS plans to update the reportable diseases list for providers in Title17 CCR 2500. The proposed change is to eliminate the phrase stage 3 (AIDS) so that all stages of HIV are reported, in line with other HIV reporting regulations. After the list is updated, the two reportable diseases listed for HIV in section 2500 will read: 1) HIV, and 2) HIV, acute infection.
How HIV is REPORTED: by providers Health care provider receives a confirmed HIV test for a patient. WHERE, WHEN, and HOW to report: Title 17 CCR 2643.5(c) HIV (all stages) within 7 calendar days to the LHO in the provider s jurisdiction: (1) All reports containing personal information, including HIV/AIDS Case Reports, shall be sent to the LHO or his or her designee by: (A) Courier service, U.S. Postal Service Express or Registered mail, or other traceable mail, facsimile, or electronically by a secure and confidential electronic reporting system established by the Department; or (B) Person-to-person transfer with LHO (or designee). (2) The health care provider shall not submit reports containing personal information to the LHO or his or her designee by electronic mail or by non-traceable mail. **Office of AIDS discourages using fax due to risk of error and breach.**
How HIV is REPORTED: by providers WHERE, WHEN, and HOW to report: HIV infection (all stages) : report to the local health officer in the provider s jurisdiction in 7 calendar days. Title 17 CCR 2643.5(c) HIV infection, stage 3 (AIDS): report to the LHO for the jurisdiction where the patient resides within 7 calendar days by mailing written report, phone, or electronic transmission. 17 CCR 2500(b), (h), and (j) HIV, acute infection: report to the LHO of the jurisdiction where the patient resides within one working day by phone. 17 CCR 2500(h) and (k)
How HIV is REPORTED: by Labs A LAB processes a confirmed HIV test. Title 17 CCR 2643.10 WHERE, WHEN, and HOW to report: HIV infection (all stages): report in 7 calendar days to the LHO in the health care provider s jurisdiction by: (b)(1) (A) Courier service, U.S. Postal Service Express or Registered mail, or other traceable mail; or (B) Person-to-person transfer with the local Health Officer or his or her designee; or (C) Provided that, commencing July 1, 2009, or within one year of the establishment of a state electronic laboratory reporting system, whichever is later, a report generated pursuant to Section 120130, or Section 121022, by a laboratory shall be submitted electronically in a manner specified by the department. (2) The laboratory shall not submit reports containing personal information to the local Health Officer or his or her designee by electronic facsimile transmission or by electronic mail or by non-traceable mail.
How HIV is REPORTED: by Labs A LAB processes a confirmed HIV. WHERE and WHEN to report: HIV infection (all stages): report to the local health officer in the health care provider s jurisdiction in 7 calendar days. (Title 17 CCR 2643.10) HIV, acute infection: report to the LHO of the jurisdiction where the patient resides within one working day by phone (17 CCR 2505(a) and (j)) AND to the state electronic reporting system within one working day of identification (17 CCR 2505(e)(2)). [Office of AIDS plans to include HIV reporting in CalREDIE in 2018.]
Lab result of HIV infection, stage 3 (AIDS) [Provider receives test result from lab.] LAB DOES THE FOLLOWING: Within 7 calendar days reports to the LHJ where the health provider is located. 17 CCR 2643.10 Sends HIV test results to provider. PROVIDER DOES THE FOLLOWING: Within 7 calendar days reports to the LHJ where the patient resides. 17 CCR 2500(b), (h), and (j) Within 7 calendar days reports to the LHJ where the health provider is located. 17 CCR 2643.5(c) Local Health Officer: receives test result from BOTH the lab and the provider. Local Health Officer DOES THE FOLLOWING: 17 CCR 2643.15 Match and unduplicate the HIV reports. Within 45 calendar days submit case report to CDPH OA via courier service, express or registered mail or other traceable mail, person to person transfer, fax, or electronically within CalREDIE. *Office of AIDS discourages using fax due to risk of potential breach.
Lab result of HIV acute infection [Provider receives test result from lab.] LAB DOES THE FOLLOWING: Within 1 working day reports by phone to the LHJ where the patient resides. 17 CCR 2505(a) and (j) Within 7 calendar days reports to the LHJ where the health provider is located. 17 CCR 2643.10 Sends HIV test results to provider. PROVIDER DOES THE FOLLOWING: Within 1 working day reports by phone to the LHJ where the patient resides. 17 CCR 2500(k) Within 7 calendar days reports to the LHJ where the health provider is located. 17 CCR 2643.5(c) Local Health Officer: receives test result from BOTH the lab and the provider. Local Health Officer DOES THE FOLLOWING: Match and unduplicate the HIV reports. Within 45 calendar days submit case report to CDPH OA via courier service, express or registered mail or other traceable mail, person to person transfer, fax, or electronically within CalREDIE. 17 CCR 2643.15 *Office of AIDS discourages using fax due to risk of potential error.
Additional Concerns/Questions?
DATA TO CARE: Data to care means utilizing HIV data to coordinate care for patients within one jurisdiction and between local health jurisdictions. Now we will cover LHD Authority to share data within its STD and HIV departments and between LHJs for care coordination and case management. Care coordination and case management: facilitating appropriate medical care and treatment.
How to share HIV/STD data between LHJs for care coordination: LHJs CAN share HIV and STD data in order to coordinate care and do case management. Legal requirements are lacking on the logistical methods for how LHJs can share data. The methods for how data can be shared for care coordination should be guided by the laws on reporting, CDC s guidelines, and best practices.
Example #1: HIV Data for Program Action Surveillance staff from Tulare County receive a laboratory report of an HIV test. They search the local HIV/AIDS surveillance registry and determine that the report is for a new HIV diagnosis. Can the local HIV prevention program initiate follow-up with that client to offer linkage to care and partner services? YES!!! Programs are encouraged to utilize their public health data for programmatic action (including HIV/STD). LEGAL AUTHORITY: HSC 121010(a): the results of an HIV test may be disclosed to the subject of the test. HSC 121025(c)(2)(C): local public health agency staff may disclose acquired or developed info to the HIV-positive person who is the subject of the record or the health care provider who provides his/her HIV care for the purpose of proactively offering and coordinating care and treatment services to him/her.
#2: Data sharing between HIV/STD staff The STD program in Alameda receives a report of primary syphilis on a 36 year old male. STD program staff can confirm HIV status, using information from the local HIV/AIDS surveillance registry, prior to the client interview, to offer integrated services. Data sharing, including confirmation of HIV status, between STD & HIV programs is allowable and encouraged in order to provide comprehensive client level services/interventions. LEGAL AUTHORITY: HSC 121025(c)(3): for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff may further disclose the information to state or local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff, the HIV-positive person who is the subject of the record, or the health care provider who provides his or her HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care.
#3: LHJ communication with the Provider Staff from San Diego County are conducting followup with a syphilis client who claims to be enrolled in HIV care and treated for syphilis with a provider. San Diego LHJ staff can contact the client s HIV care provider to confirm treatment for HIV and syphilis. LHJs can communicate with healthcare providers to coordinate public health follow-up, continuity of care, and case management. LEGAL AUTHORITY: HSC 121025(c)(3): for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff may further disclose the information to state or local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff, the HIV-positive person who is the subject of the record, or the health care provider who provides his or her HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care.
#4: Interjurisdictional Communication Staff from Riverside County are conducting follow-up with a syphilis and HIV co-infected client who claims treatment in San Diego County. LHJs can collaborate with each other, including sharing HIV/STD testing and treatment data, to ensure appropriate public health follow-up and continuity of care and case management. LHJs can also contact the health care provider directly to coordinate care. *****While public health departments are allowed to communicate directly with providers, it is recommended that if the provider is located in another jurisdiction, health departments collaborate with each other to coordinate client care, instead of contacting the provider directly. LEGAL AUTHORITY: HSC 121025(c)(3): for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff may further disclose the information to state or local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff, the HIV-positive person who is the subject of the record, or the health care provider who provides his or her HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care.
#5: Interjurisdictional Communication- Partner Information Local health department staff from Alameda interviewed a syphilis and HIV co-infected client who named sexual partners in three other LHJs in California. Alameda forwarded information to the three LHJs for partner notification. Can Alameda health department staff receive confirmation of partner notification (e.g. notification/ testing/linkage to care) to better manage their index case? LHJs are encouraged to collaborate with each other, including sharing HIV/STD testing and treatment data of cases and partners to ensure appropriate public health follow-up and continuity of care and case management. (Note: This case management data sharing privilege does not extend to CBOs or other private providers who elicit partners for partner services.) LEGAL AUTHORITY: HSC 121025(c)(3): for the purpose of facilitating appropriate medical care and treatment of persons coinfected with HIV and tuberculosis, syphilis, gonorrhea, chlamydia, hepatitis B, hepatitis C, or meningococcal infection, local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff may further disclose the information to state or local public health agency sexually transmitted disease control, communicable disease control, and tuberculosis control staff, the HIVpositive person who is the subject of the record, or the health care provider who provides his or her HIV, tuberculosis, hepatitis B, hepatitis C, meningococcal infection, and sexually transmitted disease care.
TAKE HOME MESSAGE: STD and HIV local health department staff can share data amongst themselves within their county jurisdiction and across county lines with other county staff to coordinate care and engage someone in treatment if that person has an STD (including HIV) and has had testing or treatment in another county. Which STD (including HIV) does not matter and the jurisdiction does not matter.
Legal Guidance on Methods for Data Sharing: Methods for data sharing between LHJs are not articulated in law. The manner in which data is shared BETWEEN LHJs for case management/care coordination should be guided by laws on reporting, CDC and OA guidance, and best practices. CDC guidance: https://www.cdc.gov/nchhstp/programintegration/doc s/pcsidatasecurityguidelines.pdf OA guidance based on CDC guidance OA does not fax documents containing HIV info (page 23): https://www.cdph.ca.gov/programs/cid/doa/cdph %20Document%20Library/GuideToHIV%20Surveilla nce.pdf
Take home points: You have 2 handouts to take back with you and share with your staff and county counsel: 1. Methods and Timeline for Reporting HIV Data: Legal requirements for providers, labs, and Local Health Officers (Includes links to CDC and OA guidance) 2. Legal Authority for Provider and Local Public Health Department Staff to Share Patient HIV/AIDS Information for Case Management and Care Coordination
Additional Concerns/Questions? Contact: Julie Arena Julie.Arena@cdph.ca.gov 916-324-0608
Guidance on how HIV/STD data can be shared between LHJs for care coordination Will Wheeler, Ph.D., MPH Clinical Informatics Specialist in the Prevention Research and Evaluation Section, Office of AIDS
How to share HIV/STD data between LHJs for care coordination: Office of AIDS is going to work on standard operating procedures for data sharing that will expand on surveillance guidelines to include care coordination and case management Office of AIDS and STD Control Branch will engage a local health jurisdiction advisory group in this effort Until then, default to surveillance standard operating procedures and laws/regs.
CDC Guidance on Data Sharing Strongly discourage faxing and email U.S. Mail or courier with traceable service (i.e. tracking numbers) When mailing case information use double envelope Data stored on any electronic media (CDs, floppy disc) that contains identifiable information must be encrypted prior to mailing
CDC Guidance on Data Sharing Sharing by phone Avoid situations that allow unauthorized persons to overhear any confidential information. Conduct verbal conversations that identify cases using names or other personal identifiers in secured areas Verify the identity of the other persons when initiating or receiving telephone calls discussing HIV/AIDS case information. Out-of-state communication regarding HIV/AIDS case reports should only conducted at the state level between surveillance staff authorized on the CSTE contact list.
CORE Public Health Needs Support HIV/STD testing, linkage to care/treatment, PrEP, other patient-level interventions Unrestricted data sharing between Jurisdictions Public health programs (HIV, STD) Disciplines (Disease Investigation Specialists (DIS), surveillance coordinators, case managers) Case management and client tracking Case assignment, triage, workload management Real-time information exchange between systems Program and staff monitoring and evaluation
Assumptions Surveillance should be the master list of all people living with HIV in California Additional data systems needed for nonsurveillance activities (ARIES, AES, LEO) No single existing system will meet all needs (different objectives and funding requirements) Systems must maintain independent flexibility to change to meet program specific needs CalREDIE is statewide surveillance system for all communicable diseases (adding HIV in 2 nd quarter 2018)
Constraints CalREDIE is not designed as a case management system Data exchange is essential, but extremely complex Building individual data exchange between each system is unrealistic Public health programs do not have control over all systems Legal limitations to sharing data with non-health department entities not already caring for a patient
LHJ-Specific Needs Systems need to be more user friendly, less double entry Clear policy and training regarding data sharing and data systems Greater capacity to conduct programmatic analyses Process evaluation built into systems - productivity measures, resource utilization More communication/feedback to show value and guide decision making Greater epidemiologic/analytical support
Solutions - CalREDIE Short Term Enable cross-jurisdictional data sharing Build/further expand case management functions Create combined HIV/STD/viral hepatitis user group Build HIV incident functionality Adult Case Report Form Partner services Linkage to care/retention in care Electronic laboratory reporting Long Term Develop process for data imports
Solutions Data Warehouse Develop clear vision of needs and requirements Build CDPH capacity to implement and manage Non-CalREDIE databases will need to develop additional functionality to support data exchanges Build data systems functionality to exchange data between systems
Solutions - Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Solutions Data Warehouse
Questions? Contact Will Wheeler william.wheeler@cdph.ca.gov 916-449-5864 TREMENDOUS THANKS TO ALL OA, STD, AND LHJ STAFF WHO HAVE CONTRIBUTED TO THE MANY DISCUSSIONS AROUND SURVEILLANCE AND DATA SYSTEMS OVER THE PAST DECADE.