Considerations about privacy and access are both individual and communal. Different communities have different needs, potential disclosure risks, and possible benefits associated with greater levels of accessibility or sharing of data. Community guides therefore exist to guide participants on how to set privacy settings that best reflects the participants’ values and beliefs about data sharing. Guides should be individuals who best identify with your current audience (those potentially who will take your survey) whether it be patients, caregivers, community leaders, researchers, or executives. We recommend that each registry sponsor have 3 community guides.

Overview of Participant Data Sharing, Access, and Privacy Preferences

When participants first enter their privacy data sharing, privacy, and access preferences (settings), they are given the option to customize their privacy settings. If participants choose to customize their settings, they are then given the option to view recommended settings from three community guides (Figure 1). Participants can click on the "More about me" button to view the guides' biographies (Figure 2). Participants can see the guide's level of concern for privacy in the privacy perspectives scale (Figure 3). Likewise, participants can click on "Begin with this guide's settings" to see the guides’ recommended privacy settings for 3 levels: participants with a low, medium, or high concern about privacy (Figure 4).

Figure 1: Participants can choose from three, diverse community guides.

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Figure 2: Participants can learn more about the guide.

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Figure 3: Participants can see the guide's level of concern for privacy in the privacy perspectives scale.

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Figure 4: Participants can view the guide's recommended settings based on the participant's level of concern for privacy.

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Participants are therefore able to select from a diverse range of options that best fits their beliefs about data sharing. For example, a participant may select on a community guide that they best identify with, then see the recommended privacy settings as an individual with high concerns about privacy. Similarly, another participant may select the same community guide as the first participant, but see a different set of recommended privacy settings as a participant with low concerns about privacy.

Steps to Working With Your Community Guides

Building the community guide piece into your registry consists of three overall steps: selecting your community guides, reaching out and inviting your guides, and preparing to work with your guides.

1. Selecting Community Guides

First, select and invite participants in your community to be a guide for your registry using the criteria listed below. In the invitation, be sure to explain key elements involved with serving as a community guide such as: why you are starting your registry, what a community guide is, and what being a guide entails.

When selecting community guides for your portal, we encourage choosing individuals who:

  • Understand your topic, cause, or campaign
  • Credibly represent your community and/or are highly respected within it
  • Are comfortable with sharing their story
  • Are articulate in writing and video (though you can edit their writing, so being articulate on camera is more important)
  • Will take the time to thoroughly learn about PEER, and the options available for setting sharing, privacy and data access preferences

It’s likely that many individuals in your community meet the criteria above. Because you are choosing only three guides, however, be careful when making your selections! Remember that guides should also:

  • Represent the diversity of individuals in your community, while reflecting the age and demographic of “typical” community members
  • Represent different opinions or ideas, while still making the case for your cause, campaign, registry, or project

Next, determine if you want to capture quotes, statements, etc. for any promotional content for your registry, such as a landing page feature or a testimonial for your website. We recommend that you schedule a separate call to capture this content, as some guides who are members affected by a condition, disease, or health-related issue, may experience fatigue after the guide call (which typically lasts about 45 min - 1 hour).

2. Reaching Out and Inviting Community Guides

After you’ve selected possible guide candidates, the best way to reach out to them is by explaining the following:

  • Why you are developing a registry using PEER, and/or why you are launching a campaign to collect information about individuals’ perspectives and experiences
  • How you expect this registry project to help the community
  • What a community guide is, and what it entails (what info you need from them)
  • Approximately how long it will take to capture their information (it is best to allot approximately 45 minutes to gather their information)

Please make sure to clearly state what being a guide entails. Being a guide entails having an approx. 45 minutes - 1 hour call with you and your guide to capture the guide's recommendations for the various privacy settings in the registry. The guide's recommendations will then be put up on the registry that participants can click into if they choose to customize their settings.
Registry participants will NOT be able to contact guides through the registry, and guides will not be an on-call support for participants in the registry.

It may be helpful to send potential guides images of what the community guide content looks like in the registry. You are also welcome to use any of the language in this Wiki page to explain some of the topics listed.

3. Preparing to work with your community guides

Overall, your primary goal during the call is to record your guide's recommended privacy settings for your potential participants. The best way to do this is by hosting a screenshare call with your guide, where you show the guide what the privacy settings look like for participants, set up/review the community guide profile, and record the privacy settings.

Prior to the call, please complete the following steps:

A. Schedule a screenshare call with your guide

Download a screenshare tool like Join.Me, Zoom, or Gotomeeting and send the screenshare and dial-in information to your guide.

B. Have your guide send you information for their profile

Once you schedule the call, have your guides send you their headshots (photo) and brief biographies (approx. 100- 150 words), prior to the calls. This information is necessary to create the community guides' profiles (more on this later).

C. Familiarize yourself with how the key components of the guide and how they appear to participants

You can review the participant-facing data sharing, access, and privacy settings in Figures 1 - 4 above, or view sample guides by creating a demo account in the Mowat-Wilson Syndrome Foundation demo portal. On the day of the call, it is helpful to first show your guide how participants set privacy settings from their dashboard before recording their recommendations in the administrative portal, PEER for Research.

If you want to view the guides in the demo portal, follow the steps below:

Once in the dashboard, select "Start" next to the "Manage data sharing, privacy, and access preferences" and select "Customize privacy settings". Here you can view the three guides for the Mowat-Wilson Syndrome. Note the privacy perspective scale indicating the guide's privacy concern level, and the grey information ("i") button to learn more on what this scale means (more on this later on). You can also read the guide's bio by clicking "More about me."

Click on "Begin with this guide's settings" to view a guide's recommended privacy settings. Note that participants have the option to view the guide's recommendations based on their own privacy concern level (shown below). Participants can customize their own settings further by selecting "Customize".

D. Set up your guide profile

Prepare to enter in information from your community guide in the administrative portal, PEER for Research. Navigate to your portal menu < Guides < Add guide. Enter in the information you already have from your guide. If you don't have information put "TBD" as a placeholder. Be sure to click "Save". Next, navigate to the "Enter Privacy Directives" tab (Figure 4 below). Enter in the privacy directives that are listed in your portal menu < General Settings. These are usually your organization, researchers recommended by your organization, the Genetic Alliance Translational Science Network, DiseaseInfoSearch.org-listed organizations serving your condition, and researchers recommended by any DisaseInfoSearch.org-listed organization serving your condition.

IMPORTANT NOTE: When uploading your guide profile photo, please make sure that it is in .png format. Use these two links on how to change a picture format for PC and for Mac. Currently PEER only accepts photo uploads in this format.

Figure 4: Enter Privacy Directives

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E. Add the entities seeking to access participant data (privacy directives)

Select the "Suggest Settings for Privacy Directives" tab. You will notice a drop-down menu that says "LOW privacy concerns", "MODERATE privacy concerns", and "HIGH privacy concerns" (Figure 6 below). This represents the three views that participants can see when they choose to set privacy settings along with a community guide (as seen in Figure 2). A participant can identify whether they have low, moderate, or high privacy concern and view the guides' recommendations based on their level of concern. This in turn means that the guide makes recommendations for three types of participants in mind: those with low, moderate, and high privacy concerns. When talking with your guide, make sure to capture recommendations for all three levels, and be sure to click "Save" after completing each concern level.

Be sure to review the descriptions for each privacy directive prior to the call here.

A privacy directive in PEER is an organization, community, researcher or other group with whom your participants can choose to share their data. Every PEER portal comes with pre-loaded privacy directives, and two of these are your community privacy directives. These directives are your sponsoring community's gateway to participant data, and they are owned and managed by you: a super administrator for your sponsoring community's portal. By managing the membership for your community directives, you are saying which users in PEER belong to them, and as such, can access the data that participants have share with those directives.

F. Review the guide perspective scale.

This is one of the key components to the guides. This is represented by the green to red color scale underneath the guide photo in the community guide's profile which you can create via your portal menu < Guides < Create Guide. You can read more about where the scale comes from and what it means here. Please also have this on hand when you are having the call.

G. Understand the flow of the call with your guide.

Do a practice run of Step 4: Collecting Guide Content in Community Guide Calls in PEER for Research.

4. Collecting Guide Content in Community Guide Calls

On the day of the call, be sure to complete the following steps with your guides:

A. Show the guide what the data sharing, access, and privacy preferences look like for participants

The best way to do this is by showing the Mowat-Wilson Syndrome registry on your screen and going through the same process in Step C in Step 3: Preparing to work with your community guides. Show the guide the key components of the guide including the bio, privacy perspectives scale, three levels of concern, and the privacy settings itself.

B. Review the guide's profile in PEER

Next, switch to PEER for Research and navigate to your portal menu < Guides < Add Guide. If you've already entered in your guide's information, show them where you've added in their information, and remind the guide of any information you are still missing from them.

C. Establish where the guide falls on the Guide Perspective Scale

Next, give the guide a brief overview of the privacy perspective scale. The key point of the scale to communicate to guides is that this is an quick and easy way for participants to identify where guides fall in their view towards data sharing, access, and privacy. Green indicates a low concern for privacy, yellow signifies a moderate concern, and red represents a high concern for privacy. The scale was developed from a study regarding consumer attitudes towards privacy. Be sure to also have the privacy perspectives scale document open to refer back to the study.

Once you've explained the purpose behind the scale, ask the participant where they fall on the scale and make the selection on their behalf. After making this selection, be sure to click "Save" at the top right hand corner.

The privacy perspective scale can be accessed here.

D. Capture Personal Privacy Preference Settings (3 levels)

Next, click on the "Suggest Settings for Privacy Directives" tab. Start by explaining to participants the three ways participants can share their data, using the Understanding Data Sharing and Ownership page as a reference. Then give a general overview that the left hand column is a list of the entities seeking to use your data which includes your organization. Then explain the three options to have settings - Allow, Ask Me, or Deny. Lastly, say that you will now be going through each entity listed and recording the guide's recommended settings for each.

Guides commonly ask if they should be making recommendations based on what they would do or based on what they would recommend to other participants. Our view is that it is up to the guide to find a balance between the two, and make recommended settings based on their perspectives/experiences.

It is most helpful to have the description of the entities seeking to use your data (also known as privacy directives) on hand to refer back to as you go down the list. Start with the low concern for privacy level. State the first entity listed on the left hand column, which should be your organization and ask the guide what they would recommend to participants, with a low concern for privacy, on if they would allow, ask me, or deny the organization to view their data.

IMPORTANT NOTE: Explain to the guide that there is no 'Ask Me' option listed here because participants are anonymous and can't be asked on whether or not they'd like their data to be found/analyzed. The analysis also refers to analysis within the platform. Furthermore, explain to guides that it usually doesn't make sense for participants to select "Deny" in this column because it defeats the purpose of entering in information in the registry - participants will essentially be entering in information that cannot be viewed by anyone else (anonymously) except the participant themselves.

Ask the guide the same question for the "Export/Link" and "Get Contact" columns. Then move on to the next entity listed, and repeat the process.

IMPORTANT NOTE: Be sure to capture screenshots before clicking "Save" and switching to another privacy concern level (low, moderate, high). There is currently a glitch in the system that does not save the privacy settings immediately and can re-set back to the default. Having screenshots on hand allows you to refer to these settings if you need to re-enter this information.

E. Optional: Collect promotional content for your registry

If you plan to ask for your guide's assistance in generating any promotional content for your registry, such as a landing page feature or a testimonial for your website, please also schedule time with your guide to work on this content.

5. Send follow-up information to your Community Guides

After the call, send your guide the following documents for them to refer back to in case they wish to go back and change or update their settings:

  • Privacy Directives Descriptions with screenshots of their 3-level privacy settings that they captured with you using this template.

Checkpoint: Go back to the Features section in "Developing Your Portal Brand" to review how to add your community guides as a feature for your registry landing page.

List of Resources


Lastly, review the Proxy Settings to learn how to enable authorization settings so you or others can assist participants in managing and entering information in their profiles.

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