Participants in your PEER registry start out with default privacy settings recommended by you as the registry sponsor. To set these, you need to…

  1. Select the privacy directives that will be provided to participants in their privacy settings. These will determine who your participants can choose to share data with.
  2. Choose your default settings

Participants choose to either keep their default settings, or to customize them. You can decide when this "privacy settings review" takes place in your registry flow - check out our section on designing your participant's dashboard experience to learn more!

What if I want my participants to always choose their own privacy settings?

Every community is different. If you're planning to work with participants who do not have a history with you as a trusted community leader, you might want to skip over the step in choosing privacy settings where participants can review default settings, and have participants go straight to choosing their own settings (either on their own or with the help of community guides). To turn off the default settings, toggle off the "Allow participants to use institutional default settings" under "General Settings" in your portal menu (   ).

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Set up options for your participants' privacy settings

In PEER, privacy directives are the organizations, communities, researchers or other groups with whom your participants can choose to share their data. These directives are shown to participants in their privacy settings.

Each PEER portal comes with a set of built-in privacy directives: Researchers addressing your condition, All researchers, PCORnet: Patient-Centered Outcomes Research Network, and Newly-released data analysis platforms. You can see these listed in your portal's General Settings, and review their descriptions using the table below.

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Directive Description
Researchers addressing your condition PEER (the registry platform that’s used by this project, the Platform for Engaging Everyone Responsibly) has a system that matches participants with researchers studying their condition. The “Researchers addressing your condition” setting lets you decide whether or not to include your information in this system, and whether to share data with researchers studying your condition. All researchers invited to join the platform come with research projects or protocols reviewed by an oversight committee called an institutional review board (IRB). The IRB oversight protects participants by making sure studies follow proper ethics guidelines.
All researchers The "All researchers" setting lets you decide how your information should be shared with any researcher in PEER (that is, the registry platform that’s used by this project, the Platform for Engaging Everyone Responsibly). All researchers invited to join the platform come with research projects or protocols reviewed by an oversight committee called an institutional review board (IRB). The IRB oversight protects participants by making sure studies follow proper ethics guidelines.
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If you prefer, you can limit this setting and choose only certain researchers, groups, or individuals.
PCORnet: Patient-Centered Outcomes Research Network The "PCORnet" setting lets you decide how your anonymous data, survey responses, and/or contact information should be shared with PCORnet, the Patient-Centered Outcomes Research Network (also called the National Clinical Research Network.) PCORnet conducts patient-centered research to help patients, clinicians, and caregivers make informed decisions on medical care.
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For more information about PCORnet, please visit their website at http://www.pcornet.org/.
Newly-released data analysis platforms Genetic Alliance occasionally works with academic, commercial, and publicly-funded groups on projects to transform 'big data' (lots of data) into meaningful answers. Choosing "Allow" means PEER (the registry platform that’s used by this project, the Platform for Engaging Everyone Responsibly) will automatically include the information you’ve shared in these projects. Choosing "Ask Me" means PEER will notify you about these opportunities when they arise and let you decide how you’d like to share your information then. Choosing "Deny" means PEER will not send you these notifications. Your data will not be included in these projects. You can change this setting any time, and it will take effect immediately.
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About Genetic Alliance: Genetic Alliance, a health advocacy nonprofit, manages and operates the Platform for Engaging Everyone Responsibly (PEER). Their mission, much broader than their historical genetics mission, specifically includes creating ways for individuals, families, and communities to transform health. PEER is one of the ways Genetic Alliance does this. Genetic Alliance’s work is overseen by a Council and an Ethics Team, and PEER is subject to annual IRB approval — as is every project using the platform. For more information, please visit http://www.geneticalliance.org/.

To access General Settings: open your portal menu from the main menu in PEER for Research (   ), open Settings (   ), and select General Settings.