Disease Advocacy Organization (DAO) Manual

The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal

DAO-Flowchart

Initial Consultation with Genetic Alliance

To be updated...

Expectations

Katherine

Setting up the PEER Portal

To be updated...

Timeline

To be updated...

Pre-Outreach Efforts

Katherine - move Renee content

PEER Portal Design Decisions

To be updated...

Content and User Interface(UI)

Katherine - wait for new system?

Videos & Guides Development

Tanya

Survey Questions and Development

Wayne

Question Formatting

Wayne

Using the PEER Questions Manager

Wayne

Editing Survey Questions

Wayne

Setting Up User Support System (Customer Support)

Tanya

Selected Audience Survey Testing

Now that you've implemented your survey using PEER Admin, you're ready to start testing the survey inside of your PEER Portal. This section provides a step-by-step overview of this process. Let's get started!

You will complete testing in two phases. Phase I Testing, which takes place within your organization prior to preparing for portal launch, will enable you to identify and address any content errors in your survey, as well as general system errors. Phase II testing, which takes place with members of your community directly before launch, will allow you to incorporate real user feedback before launching your portal.

Please note that testing your survey is an iterative process of finding items to change and fixing them. Depending on the length of your survey and the number of changes that need to be made after the initial pass, testing and incorporating feedback may take some time. On average, testing takes one to two weeks total, not including time in between phases.

Before Phase I Testing

Checkpoint: What needs to be accomplished prior to moving on to Phase I Testing? Please make sure you've accomplished the following items!

Received IRB approval for your project.

Implemented your finalized survey content, including PEER Common Data Instruments and your own organization's questions, using the PEER Questions Manager. • Created two separate webpages for your demo and live portals. Your demo portal, which is an exact replica of your live portal, will allow you to test your survey without entering live data. • Provided Genetic Alliance with links to both of these pages. • Received your demo portal code and live portal code from Genetic Alliance. Demo portal code: Live portal code: • Installed your demo portal by inserting your demo portal code on your demo webpage. • Reviewed your demo portal content (portal text, guides content, color scheme, etc) and requested any changes. Remember: your demo portal is a duplicate of your live portal. This is your chance to finalize how you want your live portal to look before launch. • Assigned a “DAO Point Person” to liaise with Genetic Alliance throughout the testing process. Point Person Name:

Launch

To be updated...

Full Outreach and Community Engagement

Erika adapting Renee

Research & Data

To be updated...

Additional Surveys & Updates

To be updated...

User Support

Wayne (eventually)