HIV+ individuals suffer from high levels of stigma. Unfortunately, discrimination and prejudice still exist for people living with HIV. Therefore, any data that is tied to HIV status must be kept in the highest of confidences.
However, data sharing is an important aspect of providing quality care and wrap around services for individuals suffering from poor housing environments, fleeing domestic violence, or those who need a little more help. There is an innate struggle in keeping data confidential and providing the best care possible.
The staff at The Kansas City Health Department (KCHD), and the overwhelming evidence in the field, suggests that individuals who do not have stable housing are less likely to adhere to HIV medication.
Interventions that provide housing services have shown that adequate stable housing improve HIV medication adherence, improves quality of life, reduces the spread of HIV, and is a structural intervention that works to improve lives and prevent new infection.
The KCHD has been working for three years to integrate data from two independent systems as a way of improving housing and service coordination for individuals living with HIV. The medical case managers use a database, SCOUT, that contains health variables. At the same time, housing providers use a different system, CaseWorthy, which has detailed housing related information, but lacks the same level of medical information.
The idea was to integrate these two data systems because knowing medical information might influence the services a housing provider could provide or refer out. Data sharing is the gateway that further improves communication and collaboration regarding patient health.
It seems easy to pull data from one system and put it in another, however, that task is difficult. To help with the process of data integration, KCHD applied and received funding from the Health Services Resource Administration’s (HRSA) Special Projects of National Significance (SPNS) initiative.
The RAND Corporation, along with HRSA and Housing and Urban Development staff, provided valuable technical assistance to help successfully integrate these systems.
In January of 2018, the two data systems were fully integrated, meaning that housing providers can now view detailed health information about patients, and medical providers can get more details about changes in housing status and other parts of client’s lives.
Integrating this data is important for many reasons:
- It allows medical case managers to better understand the housing situation of their clients.
- It allows housing specialists to see important medical information to better serve their clients.
- It allows different providers to communicate effectively, improving medical case manger’s expertise regarding housing, and improving housing specialist’s knowledge of medical information for their clients.
- It allows increased service coordination between medical case managers and housing specialists, which means less burdensome or redundant processes for clients trying to get services.
- It allows evidence-based decision making when dealing with limited resources and competing priorities.
- It allows providers to come together for a common purpose.
- It demonstrates the meaningfulness of having a home to call your own. A safe, personal space for people living with HIV.
The HIV medical and housing communities have provided valuable insight throughout this process and have learned many lessons. Overall, this experience has been very valuable and has led to positive changes in the HIV health system.
KCHD is currently evaluating how this data integration may change health outcomes for people living with HIV. More updates on this process and how it changes health outcomes will be available in September 2018.
For more information on this project and other exciting endeavors that KCHD is currently doing, please email Bill Snook.