Overview

The following is a global overview of the PEER process. Both GA/PA and DAO's steps are covered in a chronological manner.

Flowchart1 (Brown: GA & DAO, Orange: DAO, Purple: GA)

Flowchart2

Flowchart3

Key:

GA - Genetic Alliance

PA - Private Access

DAO - Disease Advocacy Organization

Grant Proposals (GA)

To be updated...

Private Access Portal Setup (PA)

Ditto

Initial Consultation Meeting (GA & DAO)

Plan and Set Goals and Objectives

Katherine

GA expectations/ DAO checklist

Katherine

(1) Survey questions development (DAO)

Wayne

DAO will have access to the new PEER to input and/or write their survey questions right into the PEER before IRB approval and export a copy to sent to IRB for instance.

IRB Approval (DAO)

Erika

DAO can start writing and editing their final version of their survey questions into the new PEER.

(2) Guides, Privacy Setting, Bios and Overall message, Portal Design, Videos (DAO)

Tanya

DAO are given access to their Portal so they can start inputting their Guides, Videos, setting their privacy settings. They will also be able to input their survey questions into the system if needed.

DAO need to set-up two secure URLs for their Portals (Demo and Live Portals).

(3) Pre-Outreach (DAO)

Katherine

GA/DAO Follow-up Meeting

Portal ready, Survey polishing & Development Phase

Wayne

(1) At this point, DAO should be ready or come with their 'Guides, Privacy Setting, Bios and Overall message, Portal Design, Videos' completed.

(2) DAO will then work with GA if they have any questions or encounter any difficulties inputting their survey questions into the new PEER.

Set up Customer Support (DAO)

[This step can come before the follow-up meeting and be introduced in the initial meeting]

DAO are given a SOP for Customer Support (which could be in the original SOP/Manual they are given at the initial meeting) containing instructions on errors encountered in the survey after the launch. Problem types are given a Difficulty/Importance scale and are dealt accordingly. In general, from low to high difficulty, the group to address the survey problems is as follows: DAO < GA < PA

Assign Customer Support Team (DAO)

DAO assign a team within their organization to be in charge of helping survey takers whenever they encounter mid-level survey problems. A few examples are problems with logging in, creating an account, setting a suitable password or challenge questions.

Overall Portal/Survey Check (GA)

GA obtain DAO Portal Badge and give it DAO, the final piece the latter would need along with their Live/Demo Portal Code which are all entered into their appropriate DAO secure URL.

External Testing (DAO)

Survey testing and more general testing from DAO and selected members of their community.

The testing should focus on:

(1) Survey errors (typos, branching, unexpected behaviors, technical difficulties).

(2) Content (Phrasing, message, tone, survey choice, qualitative and quantitative aspects).

Fix errors (refer to their SOP Question type Difficulty/Importance scale list)

Internal Testing? (GA)

Ditto

Final Check (GA)

Overview of all components, and brief review.

Main Outreach (DAO)

Main outreach before survey launch.

Launch

Research and Data Analysis (DAO, GA?)

Redcap

Ditto

Mixpanel

Ditto

i2b2

Ditto

Customer Support (DAO)

Ditto

Technical Support (GA, PA)

Technical difficulties that cannot be resolved by DAO. Refer to SOP Question type Difficulty/Importance scale list.

Future Updates (GA/PA)

(1)PEER CDE updates

(2)'Denovo' PEER technology features

DAO are automatically alerted.

Ongoing Outreach (DAO)

Ditto

Additional Follow-up Surveys [Optional] (DAO)

Longitudinal (DAO)

Ditto

Additional Surveys [new] (DAO)

Ditto

Update to Existing Survey Questions (DAO)

GA Fee. Cost estimation/model.