When we need to provide data to anyone, we often think of the data report without looking at the source of the data. Data flows like a stream. When we seek to provide or obtain data technical assistance, it helps to know what part of the stream needs attention. The following “steps” make up the flow of data and include collection, management, reports, and usage. These steps, and their relationships to each other, provide a way for you to assess the quality of your own data collection process, and to control data collection and storage, data quality, data reporting and usage.
One important area that you will not see in these steps is data security, privacy and confidentiality. This topic permeates data at almost every step. Certainly you must be mindful of it during Step 2, when seeking data from others. It is also important in Step 3, when you collect data. This is something you must address as a foundation for any data system you consider.
HRSA/HAB sees this as a living document, and one that will continue to change as we use it more.
Identifying and Defining Data Elements: What data do you need to collect?
- Identify what you need to collect for reporting, what your program needs to collect for internal monitoring and planning, and why. This includes:
- identifying data elements necessary for reporting
- identifying data elements necessary for program purposes including improving quality of care, and monitoring and evaluating to improve overall capacity to meet the needs of target populations
- Once identified, use provided definitions for all data elements that are required for reporting, and communicate agreed upon definitions used for all other data elements, so that everyone understands what they need to collect
Identify Data Sources: Where can you find the data you need?
- Where does the data you need reside, and in how many different places? Are there places that are easier to get the data from?
- What does it take to get the data when, where and how you need it? This includes: requesting, capturing, recording and storing data from these identified sources. It may also include development of inter-organizational agreements to ensure secure and appropriate access to data
Data Collection: How will you collect your data?
- Developing or modifying appropriate data collection tools and protocols to ensure you are collecting all targeted data as defined
- Defining, communicating how data should be collected and submitted, and as necessary providing the tools for direct entry into a database or submission of previously collected data sources
- Ensuring your data are appropriately stored to prevent inappropriate access, loss or theft through system breakdown.
- Implementing and communicating standards of confidentiality, privacy and security in order to protect your clients' data
Data Validation and Data Quality Procedures: How do you know the data you get is good and accurately reflects what you are trying to measure or report?
- Design and implement procedures to examine your data to ensure validity, reliability, completeness, timeliness, integrity and confidentiality. These procedures can include communication and training as well as system checks and routine data quality improvement activities
Data Reporting: Who do you report it to, and how do you report the data you have?
- Follow procedures to correctly and efficiently prepare and submit your data to meet the data reporting requirements of the Ryan White HIV/AIDS Program (or other funding sources).
Communicating about Data: How do you use the data you have to inform your program about how you are doing?
- How do you use the data you have to inform your program about how you are doing and where you need to go?
- Interpret and present data to inform an audience
- Use the data to inform planning, evaluation, allocations, or quality improvement.
Using the Data: How do you use the data you have to inform your program decisions?
- Evaluate and improve your program activities
- Identify gaps
- Strengthen planning or expansion efforts