Using Data for Programs:

Improving case management with surveillance data

Randy MayerChief, Bureau of HIV, STD, and Hepatitis

Iowa Department of Public Health

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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).

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.

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.

Importing Labs into CAREWareLab 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

No action taken on record (discarded).

Records with eURNS that are matched are

placed into CAREWare in eHARS

Lab domain.

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.

** 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).

Sample Import File from eHARS

Designed so that Personally Identifying Information (name, date of birth) need not be placed in file.

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.”

CAREWare

Labs already entered by agency will have a different provider; they do not overwrite.

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).

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.

“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.

Randy Mayer, M.S., M.P.HChief, Bureau of HIV, STD, and Hepatitis

Iowa Department of Public HealthRandall.Mayer@idph.iowa.gov

515-242-5150

Questions?