Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Meeting Objectives Review the purpose and proposed activities of the [HD’s] proposed Data to Care program Discuss [HD’s] current Data to Care activities Outline the benefits and challenges of a Data to Care program in [location] Identify and address important issues and concerns related to privacy, data security, and confidentiality

What is Data to Care? A newer public health strategy Uses HIV surveillance data to: –Identify people living with HIV (PLWH) who are not in care and link or re-engage them in care –Support PLWH along the HIV care continuum Promoted by CDC and implemented by a number of HDs across the U.S. –Examples: New York City, San Francisco, Seattle/King County, WA, LA, NC, Washington DC, among others

Data to Care Potential Benefits PLWH who are not in care may have high viral loads (VL) Engagement in HIV care and treatment can lead to reduced VL and HIV transmission Data to Care will potentially benefit PLWH who are not receiving care, as well as the public, by –Increasing the number of PLWH with access to life- saving treatment –Reducing ongoing HIV transmission –Increasing understanding of the health benefits of HIV treatment

Potential Benefits to Providers Health department help identify patients not in care –Resource and time savings for provider - HD identifies patients not in care and shares list with provider –Distinguishing provider’s not in care patients from those seeking care elsewhere Improvements in provider’s continuum of care –Increased retention and viral suppression rates among provider’s patients Improvements in health of provider’s patients and health of PLWH overall in [state]

Data to Care Goals Goals of Data to Care –Increase the number of PLWH out of care who are linked to or re-engaged in care –Increase the number of PLWH with undetectable VL Data to Care supports the goals of the National HIV/AIDS Strategy (NHAS) –Reduce the number of new infections –Increase access to care –Improve health outcomes

National Continuum of HIV Care,

[HD’s] Local Continuum of HIV Care, 20XX

[HD’s] Current Data to Care Activities Other Data to Care activities in the jurisdiction –Include CDC Category C, HRSA SPNS, CDC CAPUS, etc. projects that involve linkage and/or re- engagement of those not in care – describe project, any successes, etc. Next step is to develop a statewide Data to Care model and program

Key Stakeholders in the Data to Care Planning, Implementation and Evaluation Providers can help by: Determining patients’ care status Reaching out to and re-engaging patients Health Department Surveillance, prevention, care, Partner Services, linkage/retention projects Community PLWH, HIV planning groups, advocates, community advisory boards, etc. Providers Medical providers, community-based organizations

Based on who is responsible for locating, reaching, and linking/re-engaging PLWH not in care –Health Department model HD initiates linkage/re-engagement outreach –Health Care Provider model Health care provider initiates linkage/re-engagement outreach –Combination model Health Department and Provider Model Three Data to Care Models

Example Data to Care Models State of Louisiana –Presents one aspect of their Data to Care activities –“The LaPHIE program, one of LA’s Data to Care initiatives, uses a health care provider model to directly contact patients and facilitate linkage to or re-engagement in care. Providers who practice within the participating medical centers are the facilitators of this Data to Care work” State of Washington –Combination model –“WA had adopted a statewide ‘treatment as prevention’ model which focuses on ensuring that all PLWH are diagnosed, linked to consistent, optimal HIV medical care, receive antiretroviral treatment, and have a suppressed viral load” More information on the Louisiana and Washington state Data to Care program models can be found at:

[HD’s] Proposed Data to Care Model

Available at: actPrevention/PublicHealthStrategies/DatatoCare/P rogramModels.aspx

Data Sources to Identify PLWH Who are Not in Care Data to Care uses data already collected and reported to HD as part of routine HIV surveillance –Labs report CD4 and VL results to HD and they are matched to cases in HIV surveillance database Other health and non-health data sources can provide evidence that PLWH on the NIC list are actually in care –Include datasets that surveillance will be matched with, not in care list will be checked against Examples: ADAP, Medicaid, statewide communicable disease reporting, vital statistics, LexisNexis, Ancestry.com

How is Not in Care List Generated and Prioritized? Not in care definition (inclusion/exclusion criteria) –Ex: Those PLWH without a CD4/VL in the past 12 mos; include those alive at end of reporting period; exclude individuals whose last ordering facility was jail/prison. Including only certain providers in the state, if provider or combo model used? Any prioritization of cases –Only those whose last VL was >200, or who live in X area of the state. Potential # of PLWH on not in care list

Key Ethical and Legal Questions Is using surveillance data for Data to Care a legitimate public health use? Do state laws and regulations allow the proposed sharing of this information? Under the HIPAA Privacy Rule, is it allowable for providers to share patient information with the HD? Is this approach accepted by patients, providers and the public? What are the risks and benefits to patients, providers, and the public? Can the HD adequately address patient privacy and data security and confidentiality concerns?

Health Department to Conduct an Ethical Review The goal of the ethical review is to ensure that Data to Care: –Maximizes health benefits to PLWH, while also minimizing potential harm –Is the least intrusive method for linkage/re- engagement –Includes individual consent and preserves choice –Ensures patient privacy, data security, and confidentiality –Reduces health disparities

HD aims to protect patient privacy and confidentiality, while achieving its public health goals To protect confidential patient information: HD will share the minimal amount of information needed to accomplish Data to Care goals HD will only share information with those who need to know to link/re-engage patients in care Sharing of patients’ health information between providers and HD is permitted under HIPAA privacy rules, assuming appropriate measures taken Ensuring Individual Privacy and Confidentiality

Data Security and Confidentiality HD will ensure that all Data to Care data are managed, stored, and used securely and confidentially – Follow HD policies/procedures for collecting, storing, sharing, and reporting data – Conduct annual data security and confidentiality trainings with health department staff – Follow national guidelines for data security and confidentiality (requirement of CDC funding) – Protocols and agreements in place for confidential data sharing

Data Sharing between Providers and HD Data to Care activities may require sharing of personally identifiable patient data between providers and [HD] Data use agreements (DUA) or memoranda of understanding (MOU) will be required with providers before starting Data to Care activities to ensure standard procedures are used by all

What Will Not be Included in Data to Care To be drafted and added by HD to be clear what activities will not be undertaken

Discussion Questions To be drafted and added by HDs

Next Steps Include any plans to: –Engage other community groups (other groups the HD will be presenting to) –Form a new community group that focuses specifically on Data to Care –Circulate a written proposal or other materials for public consumption