HIV Surveillance System and IT Capability Survey

Form Approved

OMB No. 0920-1027

Expiration Date: 08/31/2020

HIV Surveillance Data System Needs and IT Capabilities Instrument

Public reporting burden of this collection of information is estimated to average 2 hours per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; Attn: OMB-PRA (0920-1027)

Dear HIV Surveillance Coordinator:

The Division of HIV/AIDS Prevention (DHAP) within the National Center of HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) at CDC is planning for the development of the next HIV surveillance data system to replace the current Enhanced HIV/AIDS Surveillance System (eHARS). The decade-old technology used to build eHARS creates many challenges and must give way to modern technologies and dynamic capabilities to simplify, standardize, and streamline HIV surveillance programs’ operations. DHAP is committed to fulfill the goals of CDC’s Public Health Data Modernization Initiative (https://www.cdc.gov/surveillance/surveillance-data-strategies/data-IT-transformation.html); and to ensure that the new system will provide, at all levels, high-quality and timely HIV surveillance data for public health decision making and for monitoring and evaluating the four key strategies of the Ending the HIV Epidemic plan (https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview). The HIV Incidence and Case Surveillance Branch (HICSB) within DHAP is partnering with MITRE, a not-for-profit organization that operates Federally Funded Research and Development Centers (FFRDCs), to conduct the planning activities.

You are invited to participate in this questionnaire survey developed by HICSB and MITRE. The survey is designed to help DHAP and MITRE to gain insight into the challenges and unmet data system needs that state, territorial and local HIV surveillance programs are experiencing; as well as a more comprehensive understanding of the availabilities and constraints of your health department’s IT capability.

Responding to this survey is voluntary, however, we strongly encourage your participation and sincerely appreciate the time and effort that you will spend on completing the survey. Your answers to the questions will not be made public and will only be used to inform DHAP and MITRE as we begin to gather, prioritize, and develop system requirements; identify and evaluate existing commercial and government off-the-shelf software systems (COTS or GOTS); and determine if DHAP should buy and customize a COTS or GOTS system or build the next HIV surveillance system.

The questionnaire survey will take approximately two hours to complete. For a few questions, you will need to consult with the technical or legal experts within your health department’s IT office or legal services office, respectively.

If you have questions regarding the purpose of the survey or need clarifications on any of the questions, please email your questions to [email protected].

Health Department:

Q1: Does your health department (HD) have a data system for integrated disease surveillance?

(Integrated disease surveillance data system means one system that is used to collect, store, manage, and report clinical, epidemiological, and laboratory data for multiple reportable diseases and conditions)

☐	Yes	(Answer Q2 through Q7)
☐	No	(Skip Q2 and Q3, but answer Q4 through Q7)

Q2: What is the data system that your HD uses for integrated disease surveillance?

Check One Only:
☐	Atlas
☐	Epic
☐	EpiTrax
☐	MAVEN
☐	NEDSS
☐	PRISM ASD
☐	PRISM-Based (A PRISM ASD that has been customized by the state, reside at the state, and is maintained by the state)
☐	TriSano
☐	Home grown data collection system [i.e., not a commercial off-the-shelf (COTS) or a government off-the-shelf (GOTS) system]
☐	Other, please specify:

Q3: Please answer the following questions about the data system that you checked in Q2:

(If you do not know the answer to Q3a through Q3d, please consult with your HD’s subject matter experts on the data system)

Q3a: Is the data system document-based?

(A document-based data system is capable of maintaining the relationships between various data elements, permitting multiple values for a given data element, retaining any conflicts between documents, and providing traceability to the reporting source. For example, eHARS is a document-based data system.)

☐	Yes
☐	No

Q3b: Is the system’s database physically stored on a server or servers that are in an environment owned and managed by a cloud service provider [e.g., Amazon Web Services (AWS), Microsoft Azure]?

☐	Yes:
	Please specify the name of the cloud service provider:
	Is the cloud service provider certified by the Federal Risk and Authorization Management Program (FedRAMP, https://www.fedramp.gov/)?	☐ Yes ☐ No
☐	No

Q3c: Is the data system designed to utilize RESTful web-services?

[RESTful web-services are services that are built on Representational State Transfer (REST) architecture; they provide interoperability between computer systems on the internet. For example, the calculation of the HIV case definition category (hiv_categ) can be a RESTful web-service that CDC provides to integrated disease surveillance data systems in state, territorial and local HDs]

☐	Yes
☐	No

Q3d: Is the data system capable of automatically sending real-time updates to a centralized cloud-based disease surveillance data system at CDC using web-services?

☐	Yes
☐	No

☐ Check this box if you have consulted with your HD’s subject matter experts on the data system when answering Q3a through Q3d.

Q3e: Does your program use your HD’s integrated disease surveillance data system for HIV surveillance?

☐	Yes	(Answer Q3f, Q4 through Q7)
☐	No	(Answer Q3g, Q4 through Q7)

Q3f. If the data system you checked in Q2 is a COTS or GOTS system, please use the space provided below to highlight the type of customizations and describe the level of effort that your HD had to make to meet your HIV surveillance program’s needs. If your HD did not make any customization, please type “None”.

(If you do not know the answer to Q3f, please consult with your HD’s subject matter experts on the COTS or GOTS system)

☐ Check this box if you have consulted with the subject matter experts on the COTS or GOTS system when answering Q3f.

Q3g: Does your program have plans to incorporate HIV surveillance into your HD’s integrated disease surveillance data system in the next 5 years?

☐	Yes
☐	No. Please use the space provided below to explain a) why your program does not plan to use your HD’s integrated disease surveillance data system for HIV and b) what data system does your program plan to use for HIV?

Q4: One of CDC’s Public Health Data Modernization Initiative goals is to store and analyze public health data in the cloud. For the U.S. Department of Health and Human Services (HHS), “cloud storage” means the application and the database are physically stored on a server or servers that are in an environment owned and managed by a cloud service provider that have been certified by the Federal Risk and Authorization Management Program (FedRAMP, https://www.fedramp.gov/). Is your program’s eHARS database stored in the cloud?

☐	Yes (After answering the questions in the following two bullets, you may skip Q4a, but answer Q5 through Q7):
	Please specify the name of the cloud service provider:
	Is the cloud service provider certified by FedRAMP?		☐ Yes ☐ No
☐	No	(Answer Q4a through Q7)

Q4a: Does your jurisdiction have a law, regulation, written policy or rule which prohibits your program from storing and analyzing HIV surveillance data in the cloud?

(Please consult with your HD’s legal counsel when answering this question)

☐	Yes (Please provide a copy of the law, regulation, written policy or rule to your assigned HICSB epidemiologist)
☐	No

☐ Check this box to confirm that you have consulted with your HD’s legal counsel when answering Q4a.

Q5: Please describe major “pain points” that your program are experiencing when conducting the following HIV surveillance activities.

“Pain points” could be multifaceted and may include, but are not limited to:

• Lack of automated services or tools (e.g., the process or task is arduous and is by and large manual)

• Lack of common identifier

• Data from external systems or sources must be “massaged” (manipulated, altered, recalculated, reformatted) before they can be used by eHARS or vice versa

• Multiple systems or tools are needed to accomplish a task

• Lack of control due to reliance on staff outside your surveillance program to perform the entire task or part(s) of the task

• Duplication of efforts (e.g., the same data need to be entered multiple times into separate systems)

	List and describe major pain points that your program are experiencing (If there are no pain points, please answer “None”)
Identifying cases (HIV cases & perinatal HIV exposure cases) and ascertaining reports from the following sources:
Laboratories (public health, private commercial, or hospital):
Health care providers:
Other public health databases (please specify the public health databases used):
Other sources not listed above (please specify the source):
Data collection, data entry, and data management [when describing the pain points, please include descriptions of the data standards used; external systems that are used to temporarily or permanently store and manage the data; and processing tools that are used to triage and massage the data before they can be entered into eHARS]:
Personally identifiable information:
Demographic characteristics:
Geographic locations, including census data for the location:
Risk factors for HIV acquisition:
Health care facility and provider (diagnosing as well as where person receives HIV medical care):
HIV laboratory test results, including prior negative HIV test results:
HIV medical care other than laboratory test results:
Clinical events:
HIV testing history:
Antiretroviral or prophylaxis-use history:
Birth history:
Death and causes of death:
Identification and resolution of potential intra- and inter-state duplicate reports:
Case investigations (e.g., COPHI, transmission cluster, partner services, HIV medical care status):
Other data not listed above (please specify the type of data being collected, entered, or managed):
Data quality control, monitoring, and evaluation (when describing the pain points, please include descriptions of the processes and tools used):
Laboratory data:
Adult Case Report Form data:
Pediatric Case Report Form data:
Birth data:
Death data:
Other data not listed above (please specify the type of data):
Reporting and sharing of data [when describing the pain points related to data sharing, please include descriptions of the standards (e.g., text file, excel file, SAS, HL7) and the mechanisms used to share data]:
Data reporting to CDC:
Data sharing with other programs within your health department [please specify which program(s)]:
Data sharing with HIV surveillance programs in other jurisdictions:
Data sharing with other agencies or entities not listed above (please specify the agency or entity):
Data analyses, visualization, and dissemination (when describing the pain points, please include descriptions of the tools used to analyze, visualize and understand the data):
Routine analyses (please specify the type of analysis, e.g., descriptive analyses to produce fact sheets, annual surveillance report):
Epidemiologic Profile:
Time-space analyses:
Transmission cluster data analyses:
Drug resistance data analyses:
Statistical modeling (e.g., multiple imputations, estimations):
Data security, privacy, integrity, confidentiality, and availability:
Data access control (e.g., authorization, authentication, remote access):
Data storage and backup:
Small cell suppression:
Data encryption:
Data retention and records management:
Data system maintenance [when describing the pain points, please indicate whether your surveillance team has staff members who are capable of maintaining the data system (e.g., performing system upgrades) and your team’s level of dependency on your HD’s IT office for system maintenance]:

Q6: One of CDC’s Public Health Data Modernization Initiative goals is that public health data collection systems are interoperable. “Interoperable” means two or more separate data collection systems can communicate and exchange data with one another. Please indicate how important it is to your program that the next HIV surveillance system provided by CDC is interoperable with the data systems listed below:

		Check One Only
		Not at all Important	Moderately Important	Extremely Important
1.	AIDS Drug Assistance Program (ADAP) Data Reporting (ADR) System (HRSA)	☐	☐	☐
2.	Birth registries	☐	☐	☐
3.	Cancer registries	☐	☐	☐
4.	CAREWare (HRSA) or a local data collection system for Ryan White Care Act recipients	☐	☐	☐
5.	Death registries	☐	☐	☐
6.	Hepatitis data system	☐	☐	☐
7.	Medical Monitoring Program (MMP) data systems (respond only if your jurisdiction conducts MMP)	☐	☐	☐
8.	Medicare/Medicaid data systems	☐	☐	☐
9.	National Fatality Review – Case Reporting System (NFR-CRS) or a local data collection system for Fetal and Infant Mortality Review (FIMR)	☐	☐	☐
10.	National HIV Prevention Monitoring and Evaluation (NHM&E)	☐	☐	☐
11.	Perinatal Hepatitis B Surveillance System	☐	☐	☐
12.	Prescription data systems [e.g., IQVIA Longitudinal Prescription Data (LRx)]	☐	☐	☐
13.	Sexually Transmitted Diseases (STD) data system	☐	☐	☐
14.	Transmission cluster investigation tracking system	☐	☐	☐
15.	Tuberculosis data system	☐	☐	☐
16.	Please specify below other data systems that are not listed above:
		☐	☐	☐
		☐	☐	☐
		☐	☐	☐
		☐	☐	☐

Q7: The next HIV surveillance system provided by CDC will be document-based. Below is a list of high-level functionalities that the next HIV surveillance system provided by CDC could implement. Please indicate the level of importance of each of the functionalities for your program’s operation:

			Check One Only
			Not at all Important	Moderately Important	Extremely Important
1.	Consume§ electronic health data† using HL7 standards and FHIR in real time or close to real time. § Receive, triage, check data quality, match, and load † E.g., electronic case reports, electronic laboratory reports, electronic health records		☐	☐	☐
2.	Support surveillance workflow management (e.g., an automated and intelligent notification/tickler system that alerts users of upcoming or incomplete surveillance tasks).		☐	☐	☐
3.	Facilitate, support, and evaluate the following investigation activities:
	Cases of Public Health Importance (COPHI)		☐	☐	☐
	Transmission cluster investigation and reporting		☐	☐	☐
	Partner services provision		☐	☐	☐
	Receipt of HIV medical care (e.g., laboratory tests, medical visits, use of antiretroviral medications)		☐	☐	☐
	Health status (e.g., co-infections, viral suppression)		☐	☐	☐
	Perinatal exposure investigation		☐	☐	☐
	Fetal and Infant Mortality Review (FIMR)		☐	☐	☐
	Please specify below other investigation activities that are not listed above:
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
4.	Perform the following tasks automatically and on a fixed time table (e.g., in real time):
	Identify potential duplicate reports of the same person		☐	☐	☐
	Identify molecular transmission clusters		☐	☐	☐
	Detect HIV Type-1 drug resistance mutations		☐	☐	☐
	Update meta data (e.g., zip code, county and city FIPS, CLIA code)		☐	☐	☐
	Geocode addresses		☐	☐	☐
	Perform calculations (e.g., stage of disease at diagnosis)		☐	☐	☐
	Perform data quality checks & notify potential data quality issues		☐	☐	☐
	Provide a summary view of the data that have been entered for a person		☐	☐	☐
	Please specify below other tasks that are not listed above, but should be performed automatically and on a fix time table:
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
5.	Support the following data management activities:
	Easy to add a new type of document into the system		☐	☐	☐
	Easy to add a new data field into an existing document		☐	☐	☐
	Provide system test environment		☐	☐	☐
	Perform searches (e.g., a case, a document, a facility)		☐	☐	☐
	Electronically batch import documents		☐	☐	☐
	Electronically batch updates of existing documents		☐	☐	☐
	Electronically batch delete documents		☐	☐	☐
	Move document(s) between persons		☐	☐	☐
	Perform deterministic matches at the person-level		☐	☐	☐
	Perform probabilistic matches at the person-level		☐	☐	☐
	Perform linkage with data from the U.S. Census Bureau		☐	☐	☐
	Health care facility maintenance		☐	☐	☐
	Health care provider maintenance		☐	☐	☐
	Create and maintain jurisdictional-level data fields (i.e., local fields)		☐	☐	☐
	Facilitate data sharing between HIV surveillance programs		☐	☐	☐
	Produce analytic datasets		☐	☐	☐
	Please specify below other data management activities that are not listed above:
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
6.	Support the following analysis and evaluation activities:
	Identify transmission cluster using time-space method		☐	☐	☐
	Analyze transmission cluster data		☐	☐	☐
	Analyze HIV Type-1 drug resistance mutations data		☐	☐	☐
	Produce reports (e.g., those that are similar to the national products)		☐	☐	☐
	Evaluate surveillance system performance		☐	☐	☐
	Statistical modeling (e.g., multiple imputation, statistical estimations, predictive analysis)		☐	☐	☐
	Provide data visualization capabilities		☐	☐	☐
	Please specify below other analysis and evaluation activities that are not listed above:
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
7.	Be able to transmit data to CDC automatically on a fixed timetable as well as allow user intervention (if additional data transmission is necessary)		☐	☐	☐
8.	Give jurisdiction control of user access and user rights		☐	☐	☐
9.	Encrypt data at rest and data in transit		☐	☐	☐
10.	Provide online documentation of the system		☐	☐	☐
11.	Please specify below other critical functionalities at a high level that are not listed above:
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐
			☐	☐	☐

End of survey

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