Disease Advocacy Organization (DAO) Manual

From WikiAdvocacy

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


Initial Consultation with Genetic Alliance

To be updated...



Setting up the PEER Portal

To be updated...


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


Survey Questions and Development


Question Formatting


Using the PEER Questions Manager


Editing Survey Questions


Setting Up User Support System (Customer Support)


Selected Audience Survey Testing

Now that you've implemented your survey using PEER Admin, you should be 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!

You should have...

  • 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.
  • Finalized the future location of your PEER Portal, and entered this information into PEER Admin. Remember, you need two different locations on your website for your demo portal and your live portal. Your demo portal, which is an exact replica of your live portal, allows you to test and view your portal without interfering with data collection.
  • Completed portal customization within PEER Admin. You should have entered guide information, and chosen your PEER color scheme.
  • Installed your demo PEER Portal by inserting your demo portal code (available following portal customization) on your demo webpage.
  • Assigned a “Point Person” within your organization to liaise with the PEER Team throughout the testing process. When you are ready to start testing, it is up to your Point Person to let the PEER Team know!

Phase I Testing

If you've completed the checklist items above, you are ready to start Phase I Testing. Phase I Testing will help you to identify possible errors in your survey, such as branching errors or grammatical errors. This phase of testing is conducted entirely within your demo portal, with the assistance of members of your staff or trusted partners.

To get started, have your organization's Point Person contact the PEER Team and tell us that you are ready to begin testing. We will provide you with the required documentation, including...

  • Your "Tester Information" sheet. This is where you will keep track of outreach to your testers, as well as information about your testers' roles when taking the survey.

Once you've received these documents, simply follow the instructions provided below!

Phase I Instructions

  1. Choose and invite six people, including yourself, to test the demo portal survey. Keep track of outreach to these individuals using your “Tester Information” sheet, available here: [link to “Tester Information” Google spreadsheet]. Plan to invite these individuals a week before you wish to begin testing. They should be individuals who have a sense of your condition or disease, and are comfortable with technology in general. Together, you are all the ‘testers’.

Note: We have provided a sample invitation email for these testers in the Appendix, available to you if you choose.

b. Make sure you can access the documentation spreadsheets that we have assigned to you. You have two links: one where your testers will submit feedback, and one where you will be able to view and manage their feedback. Please check these links now.

Your “Phase I Testing Feedback” form is located here: [link]. This is what you will provide your testers.

Your “Phase I Testing Feedback” SmartSheet is located here: [link]. This is what allows you to see all of your testers’ responses together.

c. Assign each of the testers a ‘role’ for testing the survey. As you have seen in the survey creation process, the survey is designed to capture information either from individuals who are answering for themselves, or from individuals who are answering for another person. Different roles reflect this distinction.

The minimum number of roles is listed below, but depending on the choices you made when designing your survey, there may be additional roles to consider (ie, in addition to affected individuals, a carrier answering for himself, someone with the legal right to answer for a male carrier who is decisionally impaired, and so on). If this is the case, you will need to assign testers multiple roles. If you have additional survey roles to assign please write them in the space provided. Then, note who will receive which roles using the “Tester Information” spreadsheet.

Note: You may also want to assign Internet browsers with roles, to ensure that your survey is tested across as many platforms as possible. For instance, the tester answering for an affected male answering as himself might test the survey on Safari, while the tester answering for an affected female answering for herself might test the survey on Google Chrome. If you choose to assign browsers (recommended), please make note of this in the “Tester Information” spreadsheet.

Survey Roles

o An affected male, answering for himself o An affected female, answering for herself o Someone with the legal right to answer (caregiver, assistant, relative, friend…) answering for an affected male who is decisionally impaired o Someone with the legal right to answer (caregiver, assistant, relative, friend…) answering for an affected female who is decisionally impaired o Someone with the legal right to answer, responding about a deceased male o Someone with the legal right to answer, responding about a deceased female

Additional Roles:

d. As soon as you can, send each confirmed tester an instructions email containing the Phase I Tester Instructions (below), after you have customized them for your condition or disease. It is a good idea to review these instructions yourself as you customize them, so that you are familiar with the entire process ahead of time.

Each of the testers should…

o Read the ‘tester’ instructions you provided. o Go to the demo URL. o Create an account in the role or roles that you have assigned the tester. Depending on their roles, testers may need to make additional profiles within their accounts to test the survey. o Test by proceeding as though they were the person in the role affected by the condition or disease. o Record any issues using the documentation we have provided for you. Testers will submit feedback using a form available at this link: [link to “Phase I Testing Feedback” form here]. For a detailed list of items that testers should look out for during this process, please see “Testing Tips: What to Watch For”. o Email you to confirm that they have completed testing, and to tell you how long it took them to take the survey.

For a sample instructions email to send to your Phase I Testers, please see the Appendix. Testers should complete testing 2-3 days after your desired testing start date.

e. You will be in charge of curating errors throughout the feedback collection process. You can access the data from your testing feedback form here, through SmartSheet: [link to “Phase I Testing Feedback Smartsheet here]. You should log into the spreadsheet daily throughout the testing to view feedback entries. Follow this process as you collect entries…

o Determine whether the issue is something you can resolve. For instance, if users having difficulties logging in, or have trouble creating new health profiles, you will likely be able to assist them unless there is an underlying system error. o If you can resolve an issue, assign it to one of your staff. Indicate whose responsibility these issues are within the Phase I Testing Feedback SmartSheet under the “Assigned To” Column. Note: Be sure to save your changes whenever you enter new information into the SmartSheet! Simply click on the save button in the left-hand menu, as shown below.

o When the issue has been resolved, please indicate this in the SmartSheet. Simply click the checkbox in the “Resolved?” column. If issues do not require action (for instance, someone has suggested a change to survey content, but you have decided not to make this change), please be sure that they are indicated as “Resolved” as well. Remember, be sure to save your changes whenever you enter new information into the SmartSheet! o Identify issues that you and your staff cannot resolve on your own. These might include feedback about the survey itself (grammar mistakes, proposed question content, problems with branching in the survey) or feedback about the portal (requesting changes to text, correcting remaining errors in guide bios). These may also include issues that you have attempted to resolve on your own (such as difficulties with logins, creating new profiles, and so on) that now need to be escalated to the PEER Team for troubleshooting*. o Assign issues that you cannot resolve on your own back to us. Do this by typing “PEER Team” into the “Assigned To” column. Please alert GAPP over email as you assign these issues, and don’t forget to save changes to the Smartsheet! o As we work to resolve the issues assigned to us, we will indicate this within the feedback documentation. We will contact you with any questions, and if needed, will set up a screen share to assist in resolving issues.

  • The PEER Team offers troubleshooting only after all reasonable avenues have been exhausted. This means we expect that, with login problems or other account creation and navigation problems, you and your staff will investigate the issue (screen share with the tester, note the browser and version, the operating system and version, check the FAQ for any known issues. If you cannot resolve the issue, you should contact GAPP. The process…

1. The DAO has a screen share with the tester and resolves the issue. If no resolution… 2. The DAO asks PEER (what mean ask PEER?) to help and have a screen share. If no resolution… 3. Escalated to PEER administrators (mean GAPP not PEER admin??) who develop a resolution plan. Examples of issues that are likely to be escalated are survey “freezes”, survey/portal display issues, and account issues.

f. Once all issues are resolved we will notify you. You should check to identify that no issues remain, either on your own, or with the help of your testers. It is up to you whether you involve your other testers in this second round of checks – depending on the types of feedback provided you may or may not find your testers’ assistance in reviewing the system necessary (for instance, you will be able to check changes to the portal, and many changes to the survey, yourself). If all issues are indeed taken care of we will direct you to set a launch date. Shortly before your launch date, you will launch your live portal and commence Phase II testing.


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)