1. Using Data for Programs:
Improving case management with surveillance data
Randy Mayer Chief, Bureau of HIV, STD, and Hepatitis Iowa Department of Public Health

2. Overall Goals
To promote and allow better use of surveillance data for programs.
To plan for confidentiality and security of data once it had been transferred out of surveillance.

3. Specific Objectives
Transfer viral loads and CD4+ cell counts from eHARS, the surveillance database, to CAREWare, the case management database.
Use surveillance data and information for retention and re-engagement programs.

4. Iowa’s Problem HIV surveillance data are governed by Iowa Code 141A.9.
Very restrictive in how data can be released and used.
Allowed for release of diagnostic test results to subject of test; to his/her provider; to anyone with a signed release; or by court order (and then only as a last resort).
Allowed for use of medical information by department staff for disease prevention only.

5. Other Problems
Did not allow release of data outside the department (e.g., case managers in other agencies).
Did not allow for discussions/release with other state and federal health agencies.
Did not allow for release of medical information to case management agencies working to re-engage people in care.
*Desire at AGM

6. Our Approaches
Revise the confidentiality section of Iowa Code to allow for wider use and release of data.
Devise methods to allow us to work better within the current law – at least with the transfer of data to agencies that serve Ryan White Part B program clients.

7. Iowa Code Change Update of Iowa Code
Adding specific language to code to describe this use of medical information (i.e., transparency).
141A.9 Paragraph 8. Medical information secured pursuant to subsection 1 may be shared with other state or federal agencies, with employees or agents of the department, or with local units of government, who have a need for the information in the performance of their duties related to HIV prevention, disease surveillance, or care of persons with HIV, only as necessary to administer the program for which the information is collected or to administer a program within the other agency. Confidential information transferred to other entities under this subsection shall continue to maintain its confidential status and shall not be rereleased by the receiving entity.
Section in code, specific to HIV re: confidentiality and use of data
Language currently isn’t clear we’d be using data in this manner – specifically case managers

8. Additional Steps Revise and strengthen case management forms:
Client Enrollment and Consent – add signed release of surveillance data to case management agencies – all clients must sign to be in Part B case management.
Confidentiality form – agency employees sign forms parallel to what departmental employees sign.
Exchange of Data form – allows for continuous exchange of information between agencies and medical providers or care teams.
Release of Information form – from case management agency to other entities.
*in the past labs may have been received by agencies, but not much may have been done with the information, certain agencies were using the labs to monitor outcomes (medical case management) before it was a focus of ryan white part b agencies

9. Additional Steps
Establish a data sharing agreement between surveillance and the Ryan White Part B Program.
Conduct assessments of data security and confidentiality protections at the case management agencies as part of site visits.
Provide security and confidentiality training to agency employees.
*in the past labs may have been received by agencies, but not much may have been done with the information, certain agencies were using the labs to monitor outcomes (medical case management) before it was a focus of ryan white part b agencies

10. CAREWare Security Password set by Case Manager
Locks out after 3 failed attempts, has to be reset by IDPH
User-specific token issues a unique code to user
Soft Pin (4-digit number) needed in addition to token code

11. Why Labs are Needed – Medical Case Management Model
Ensure that clients are in care – HRSA performance measure.
Tie CD4+ cell counts to health outcomes.
Monitor progress on goal of viral load suppression.
To give direct input/feedback to medical case managers – e.g., adherence, linkage to and retention in care.

12. Why Labs are Needed – Medical Case Management Model
Free up time for case managers to be case managers (i.e., stop collecting lab data).
Stop bothering medical providers when the department already has the data in-house.
Allow us to more easily analyze Ryan White client-level data (e.g., unmet need for primary medical care).

13. CAREWare in Iowa
It is used by the Ryan White Part B Program to collect client-level data on case management and ADAP.
All Ryan White Part B agencies in the state are networked through the Internet on a departmental server.
Two Part B agencies are also Part C clinics; other Part C agencies will be joining the network soon.

14. eHARS to CAREWare
All levels of viral loads and all CD4+ cell counts are reportable to the department (since 2005).
Iowa Department of Public Health (IDPH) contracted with jProg to develop an eHARS Import Tool for CD4+ cell counts and viral loads.

15. Importing Labs into CAREWare
Lab data from eHARS are put in Excel file and placed on the secure server for CAREWare to receive.
eHARS Lab Importer creates HL7 file from Excel file then imports that HL7 file.
Importer matches on eURN from HL7 file to client eURN in CAREWARE.
eURNs that don’t match
eURNs that do match
Agencies access their clients’ information via their own domain through the Labs tab.
Sharing is turned on for clients who have signed consent forms using Provider Setup Wizard.
Records with eURNS that are matched are placed into CAREWare in eHARS Lab domain.
No action taken on record (discarded).
** All labs that match eURNs go into CAREWare, but not all clients will may have active ROIs (and their data will not be shared with their case management agency).

16. Sample Import File from eHARS
Designed so that Personally Identifying Information (name, date of birth) need not be placed in file.

17. Changes to Provider Setup Wizard:
“Clinical data are shared client by client, and only with providers that are individually granted access. When a request is granted, all clinical data for that client are viewable.”

18. CAREWare
**Desire – at the Iowa AGM
Labs already entered by agency will have a different provider; they do not overwrite.

19. Caveat
eURN is not a person-level variable in eHARS, meaning that it is re-calculated after each document entry (lab, case report, death certificate).
eURN needs correct first name (first 3 letters), last name (first 3 letters), and sex to calculate correctly.
Because lab results often don’t include sex, eURN is often incorrect in eHARS, and people have multiple eURNs (one for each document).

20. Our Solution
Assigned a new variable to each person in CAREWare and eHARS. We use that to pull data from eHARS.
The data request from RW contains a list of eURNs along with the new variable. Surveillance matches on new variable and leaves eURN from RW program.

21. “The true value of surveillance is measured by its impact on public health action and practice.”
Weinstock H, Douglas JM Jr, Fenton KA. Toward integration of STD, HIV, TB, and viral hepatitis surveillance. Public Health Rep. 2009;124(Suppl 2):5–6.

22. Questions?
Randy Mayer, M.S., M.P.H Chief, Bureau of HIV, STD, and Hepatitis Iowa Department of Public Health