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

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Page 1: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Community Feedback and Involvement in

[Health Department’s]Proposed Data to Care Program

[Name of Provider SessionDate of Provider Session]

Page 2: 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

Page 3: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 4: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 5: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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]

Page 6: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 7: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

National Continuum of HIV Care, 2010

http://www.cdc.gov/nchhstp/newsroom/docs/HIVFactSheets/TodaysEpidemic-508.pdf

Page 8: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 9: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

[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

Page 10: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

CommunityPLWH, HIV

planning groups, advocates, community

advisory boards, etc.

ProvidersMedical providers, community-based

organizations

Page 11: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]
Page 12: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

• 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

Page 13: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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:http://www.effectiveinterventions.org/en/HighImpactPrevention/PublicHealthStrategies/DatatoCare.aspx

Page 14: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

[HD’s] Proposed Data to Care Model

Page 15: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Available at: http://www.effectiveinterventions.org/en/HighImpactPrevention/PublicHealthStrategies/DatatoCare/ProgramModels.aspx

Page 16: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Available at: http://www.effectiveinterventions.org/en/HighImpactPrevention/PublicHealthStrategies/DatatoCare/ProgramModels.aspx

Page 17: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Available at: http://www.effectiveinterventions.org/en/HighImpactPrevention/PublicHealthStrategies/DatatoCare/ProgramModels.aspx

Page 18: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 19: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 20: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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?

Page 21: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 22: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

• 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

Page 23: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 24: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 25: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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

Page 26: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

Discussion Questions• To be drafted and added by HDs

Page 27: Community Feedback and Involvement in [Health Department’s] Proposed Data to Care Program [Name of Provider Session Date of Provider Session]

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