Difference between revisions of "Disease Advocacy Organization (DAO) Manual"

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[[File:Outreach_and_Engagement_(version).docx|200px|thumb|400px|right|Outreach doc]]
[[File:Outreach_and_Engagement_(version).docx|200px|thumb|400px|right|Outreach doc]]
Group Projects: Project Focus and Goals
Group Projects: Project Focus and Goals
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         - Participation of community members  
         - Participation of community members  
Understand the community’s perceptions of data sharing (see document for image)
Understand the community’s perceptions of data sharing
Launch Day Checklist
Launch Day:
'''Post Launch Continuous Outreach'''  
''Frequency and reach are important to grabbing the attention of participants.  
• Send out a press release (a sample will be provided)
''Outreach to member patients  
• Post an op-ed piece on a “do it yourself” news page. Some local newspapers have them. Here is an example of one in Colorado: http://www.denverpost.com/yourhub. Here is a list of op-ed information for various newspapers: http://www.theopedproject.org/index.php?option=com_content&view=article&id=47&Itemid=54
Social media, listservs and other groups
• Post your launch information on your Facebook page. If possible, make sure there is a graphic in it to grab attention or link to your survey page so that it will show the image on Facebook.
All types of mail
• Post your launch information/Press Release on Twitter.
• Send a Constant Contact (or other email client) message about the launch to your members.
• Post your launch information in all of your forums, listservs, groups
'''Post-Launch Continuous Outreach:'''  
Your continued outreach will involve messaging to your members and others on a regular basis through a number of means, depending upon your ability. You will develop a specific plan for your own organization. Below are ideas for outreach to member participants and non-member, potential participants. These are meant to help you to think about what you might do, but is not meant to be directive.
'''Frequency and reach are important to grabbing the attention of participants.''' ''Italic text''
You will need to spend time on outreach every week for the number of weeks you are trying to get people to take your survey. They need to hear about it from you, your partners, the doctors and clinics you work with, the media, their friends and family, their support group sources, other support organizations and anyone else who can help you to make sure they realize they need to take action.  
'''Outreach to member patients  
'''''Italic text''
The following are many different communication methods you can use to reach your own membership. Use as many of them as possible. If possible, assign someone in your organization to be responsible for getting these messages out on a weekly schedule.
Social media, listservs and other groups  
• On a Facebook fan page, you can pay to boost posts on others’ feeds
• Post a variety of messages that appeal to different people in different ways
• Post regular updates about your success in getting responses and, if possible, put a thermometer on your website that shows the number of people who have taken the survey against your goal number.
• Not everyone is connected to the Internet, so it may be beneficial to call your members and speak to them directly about your project. This way, if they have any questions you can answer them immediately.
All types of mail:
• Send emails through Constant Contact or other email clients
• Send postcards to your members by regular mail.
• If you use an advocacy alert system, send out a message asking for involvement
• Newsletters
Utilize thought leaders in your membership  
Utilize thought leaders in your membership  
• Reach out to specific individuals, asking for their help because they are leaders in your group. Ask them to take the survey and post on your Facebook page or other groups about how easy it was and why it is important. Be sure to ask a variety of people to get involved.
• Ask leaders to speak briefly at your launch party.
Ask members to help  
Ask members to help  
• Many of your members have blogs and Facebook pages chronicling their experience within your community. Reach out to your membership to ask who has such blogs and Facebook pages and ask them to post about your project, and to tag your page in the post.
• Many of your members are also on Twitter. Be sure to ask them to retweet your tweets.
• Ask members to forward your messages to members they know who do not stay connected to your group.
• Create a Youtube about your project and ask your members to share it.
• Ask members to forward your messages about the project to interested communities of which they belong (such as support groups).
• Add a feature on your website so that people can refer their friends after completing the survey.
In-person meetings & Webinars  
In-person meetings & Webinars  
• The size of your organization will largely dictate your ability to engage with your members face to face.
Your organization can conduct events directly related to your project (Launch party, Schedule Day)
• Smaller organizations:
''Videos and YouTube''
            -Bring a laptop or tablet to a meeting and help people to use the survey
"Outreach to non-members (potential participants)"
• Organizations of any size:
        -Give a conference presentation about the project and why it is important (we have created a Powerpoint presentation for you to use. You can give the presentation at a        conference or in a Webinar).
• Conduct a webinar on the project, record it and post it to your Web page
Your organization can conduct events directly related to your project such as:
Launch party – have an in-person or virtual launch party (or both at the same time). Invite your members and any local partners you may have. Give a short presentation and have some fun as well. Announce your event through a Facebook event so that all of your followers get an invitation or send out formal invitations for an in-person event. You can also do a creative online launch party on Twitter or Facebook.
• SCHEDULE Day - To address some of the concerns everyone has about members not having time to do the survey, schedule an “event” post-launch where you ask your members to SCHEDULE that day to do their survey. On that day, have volunteers from your organization available to answer questions about filling out the survey (navigators). You can obviously do more than one SCHEDULE day.
      o For some of you who have members who will need family or friends to help them to fill out the survey, be sure to mention that they should also schedule a friend or family member for that day to help them.
      o Create buzz around your SCHEDULE day. When you send the invitation on Facebook, they will answer if they will “attend” or not. That will give you some idea of how many people were paying attention. If it is successful, do another one! Even if members don’t participate on that day, you will be getting out the message that they should set time aside to do this. Prior to launch, you may need to train your volunteers and figure out how to take calls or answer questions online from members who have questions.
==Research & Data==
==Research & Data==

Revision as of 21:16, 12 January 2015

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 him or her with the required documentation, including...

  • Your Tester Information sheet. This is where your Point Person will keep track of outreach to your testers, as well as information about your testers' roles when taking the survey.
  • Your Phase I Testing Feedback form. This is where your testers will submit feedback.
  • Your Phase I Testing Feedback SmartSheet. This is where your Point Person will manage and respond to feedback.
  • Your Phase I Testing Instructions. Your Point Person will provide these instructions to your testers.
  • Sample tester communications, including an invitation email. Your point person may use these templates to assist him or her in contacting and communicating with your testers.

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

Phase I Point Person 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. 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".
  2. Make sure you can access the documentation spreadsheets that we have assigned to you: your “Phase I Testing Feedback” form and your “Phase I Testing Feedback” SmartSheet. If you cannot, alert the PEER Team.
  3. Assign each of the testers a "role" for testing the survey. As you saw during the process of building your survey, 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 tester roles is listed below, but depending on the choices you made when designing your survey there may be additional roles to consider (for instance, individuals affected with a condition versus individuals who are carriers for a condition). If this is the case, you may need to assign multiple roles to your testers, as it's important to test the entirety of your survey. Be sure to note who will receive which roles using your Tester Information sheet.
    Note that 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 sheet.
    Survey Roles
    An affected male, answering for himself
    An affected female, answering for herself
    Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected male who is decisionally impaired
    Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected female who is decisionally impaired
    Someone with the legal right to answer, responding for a deceased male
    Someone with the legal right to answer, responding for a deceased female
    Any additional roles that you assign
  4. As soon as you can, send each confirmed tester an instructions email containing the Phase I Tester Instructions which we have provided to you. Be sure that you have reviewed these instructions yourself, and customized them for your condition or disease. After receiving your email, each of the testers should…
    • Read the ‘tester’ instructions you provided.
    • Go to the demo URL.
    • 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.
    • Test by proceeding as though they were the person in the role affected by the condition or disease.
    • 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”.
    • 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...

Launch and Post-Launch Outreach and Community Engagement

Erika adapting Renee

File:Outreach and Engagement (version).docx


Group Projects: Project Focus and Goals

  -Internally determine project focus and goals 
        -Assign tangible outcomes (ie goal for how many members of your community you want to reach out to and what percent you can enroll in the registry) 
  -Strengths and Weaknesses 
        - Participation of community members 

Understand the community’s perceptions of data sharing

Launch Day Checklist

Post Launch Continuous Outreach Frequency and reach are important to grabbing the attention of participants. Outreach to member patients Social media, listservs and other groups All types of mail Utilize thought leaders in your membership Ask members to help In-person meetings & Webinars Your organization can conduct events directly related to your project (Launch party, Schedule Day) Videos and YouTube "Outreach to non-members (potential participants)" "Events"

Research & Data

To be updated...

Additional Surveys & Updates

To be updated...

User Support

Wayne (eventually)