Communities using PEER to build registries are referred to as registry sponsors. Each sponsor is responsible for developing, launching, promoting, and managing their own registries. This wiki was created to guide sponsors through the basics of these processes. In addition to providing sponsors with a step by step walk-through, the wiki provides you with key resources to address common issues and questions.
As you saw earlier, this wiki is divided into three parts: an introductory part (this part), followed by two parts on registry development and registry management. We think it's important to distinguish between developing and managing your registry because these tasks can require very different skill sets, and often, very different sets of resources! Therefore, we provide an overview of what you can expect as you go through each part and what's required from you in building and managing your registry. Lastly, we introduce you to our project management tool for your registry launch and beyond.
Part 2 Overview: Registry Development
Each registry sponsor is responsible for the following prior to launching their registries:
1. Obtaining IRB approval
2. Building surveys for data collection
3. Messaging and branding your portal
4. Navigating data sharing, privacy, and access settings
5. Developing your portal's outreach plan
5. Conducting user testing and launching
When building your registry, especially your surveys, you will most likely need to partner or consult outside experts. Creating a health-related survey is not as simple as creating a survey to ask for feedback about an event. Whether you are collecting qualitative or quantitative information, you have to consider what you are measuring and how you want to measure it. This is because, depending on your registry goals, groups often collect information for multiple purposes and uses.
For example, groups can have questions that are important to their communities such as wanting to know the percentage of those who have dizziness as a symptom of their condition. In this case, it is easy to create the question, “I have experienced dizziness…” in your survey. However, most PEER groups want to also leverage data for research. In this case, you have to consider another dimension to your questions including:
- How researchers measure symptoms
- Other symptom-related information that could be relevant
- Other use cases for symptom-related questions that researchers may want/could use
Therefore, it is important to either consult outside experts or partner with researchers to look at various use data use cases and how its measured for various uses.
The great news is that PEER helps groups get started in the measurement process. Our platform has a large selection of pre-built, validated Common Data Instruments (CDI) that cover common measures such as gender, race/ethnicity, age, and more. A full list of the CDIs can be found here. We encourage all groups to use as many CDI’s as possible, as these are validated measures, and are designed to easily compare data with other datasets.
Furthermore, know that the process of building your registry will take time. Building your registry also doesn’t have to happen all at once, and it is best to work on different pieces of the registry as small projects to be implemented according to your desired timeline.
Part 3 Overview: Registry Management
After your registry is launched, sponsors are also responsible for managing the following aspects of their registries including:
1. Data Analysis
2. Continued Engagement
Your registry will take time to grow, and we strongly encourage groups to re-engage with existing participants in addition to seeking out new ones.
Similar to the process of building your registry, it takes time to: 1) manage and analyze your data, and 2) to grow your registry. We encourage all groups to consult and partner with outside experts to conduct an in-depth analysis of your registry data and create effective engagement campaigns. PEER offers a basic data search and management feature called Search Registry Data which allows you to look at your survey data on both an aggregate and case-by-case level. In addition, we shared methods used by other groups to analyze their registry data outside of the platform. For outreach, PEER currently enables integrations with Google Analytics, which allows you to track your engagement by creating referral codes within the platform. In 2018, the platform will also allow you to create and schedule messages directly to your registry participants (via email or through the platform, depending on the participant's data sharing, privacy, and access settings). However these tools are resources to help you get started, but ultimately not the end-all to analyzing or growing your registry.
Next, learn about who to contact for support throughout the registry development and management process.
