HAB worked with grantees to develop a client-level data system that would provide the data needed while protecting the identity and health information of Ryan White clients. Although grantees had concerns about the transition to client-level data, acceptance was much greater than in the early days of the Program as a result of the Congressional mandates and the recognition that the Ryan White Program would be well served if HAB, grantees, and advocates could point to concrete data about the Program’s impact.
To incorporate client-level data in its data reporting system, HAB embarked on a process to develop and incorporate a unique client identifier (UCI) that would allow grantees to report client-level data without breaching the confidentiality of those served. In this way, HAB would be able to comply with other congressional mandates that no personally identifiable information be submitted by grantees.
The UCI is a unique, 11-character, alphanumeric code that distinguishes one Ryan White client from all others and is the same for the client across all provider settings. The UCI is derived from the first and third letters of a client’s first and last name, his or her date of birth (MM/DD/YY), and a code for gender (1 = male, 2 = female, 3 = transgender, 9 = unknown). A 12th character, A to Z, is added if a provider needs to distinguish between two clients with the same UCI.16
Funded agencies provide detailed information on the demographics, services received, and health status of each client over time. The data have a number of built-in protections, including encryption at the source and transmission to HAB across secure lines. The data allow HAB to monitor a person’s service utilization and health status over time as well as track that person’s care across multiple agencies. The system enables the following activities:
- HAB can report accurate, unduplicated counts of clients and improve measurement and reporting of Ryan White HIV/AIDS Program performance goals.
- HAB and funded agencies can identify gaps between accepted standards of care and services received.
- Funded agencies can identify service delivery needs and evaluate progress in meeting core clinical performance goals.17
Positive Outcomes of Client-Level Data Collection
Grantees began collecting client-level data in January 2009 as part of the requirements for the new Ryan White Services Report, an evolution of the previous Ryan White Data Report (see the HRSA publication Using Data to Measure Public Health Performance to learn more).18 HAB provided technical assistance and support to grantees to help them build capacity in this area, including projects funded by the Special Projects of National Significance (SPNS) Program. The Louisiana Public Health Information Exchange (LaPHIE), one of the SPNS-funded projects, demonstrates the positive effects of using personal health data to improve linkage and access to care while protecting patient confidentiality.
LaPHIE is a partnership of the Louisiana State University (LSU) Health Care Services Division, which runs several public hospitals, and the Louisiana Office of Public Health (OPH). LaPHIE established an electronic link between OPH clinics and LSU’s electronic medical records system to link into care PLWHA who are not in care. OPH maintains the list of PLWHA in the State and also receives and tracks their CD4 and viral load test reports.