Below are the most common questions among participants and steps to resolve the problem that you, as an administrator, can provide to participants. In addition, below are common issues among administrators and steps to resolve them from the PEER team. If you do NOT see your issue listed, please refer to the How to Report Issues page to ensure that we can help you in the best way possible.

Table of Contents

General

Below are questions that impact both participants and administrators.

How can I tell when my survey session times out?

PEER currently does not notify participants or administrators when their session is about to time out. This is a known issue and we have reported it to our tech team. In the meantime, we encourage everyone to finish their surveys or activities in one sitting. For participants, your data will be saved even when your session times out.

Why do I receive notification that the registry site is not secure?

The registry itself is secure, and is embedded into an organization's website. You are most likely seeing this notice because the organization's website does not have an SSL (Security Sockets Layer) certificate for its site. SSL refers to use of a secure protocol to safely transfer information across the web. Websites or applications with SSL certificates follow this secure protocol, ensuring safe transfer of your information. To learn more about SSL, please view this video on SSL certificates.

Why doesn't the platform need HIPPA compliance?

PEER does not need to be HIPPA-compliant because Genetic Alliance, Private Access (the consent and management company that services the privacy settings in the platform), the disease advocacy groups or individuals using PEER do not fall within the definition of being a “Covered Entity” or a “Business Associate” of a Covered Entity under HIPAA (see https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html). However, if PEER is ever licensed, sold, implemented, and used by an entity that bills a payer (e.g., insurance company, Medicare) for health services delivered to a patient, then that entity is a “covered entity,” and PEER needs to comply with HIPAA as a system operated by the covered entity. If that covered entity also contracts for PEER operational services, then the service provider is a “business associate” and must also comply with HIPAA.

For Participants

Below are common questions asked by participants. Please feel free to adapt the language to send to your participants or to create your own FAQs for your participants. However, we ask that you do not send participants a direct link to this Wiki page.

What do I do if I can't log in?

Please use the forgot username, password, or challenge questions links to re-set your username, password, or challenge questions.

What if I didn't receive the verification email?

First, please check your junk or spam. The verification email comes from moc.sseccaetavirp|ylper-on#moc.sseccaetavirp|ylper-on with the email subject “[Your registry name] Verification”. For example, "UMDF Verification".

If the email is still not there, please try clearing your cache (please refer to the “What if the page doesn’t load after refreshing?” for instructions how).

If you are also using a work email, sometimes companies have their emails set up so that it automatically blocks certain addresses from filtering through. Please try registering your personal email and try registering again. If none of the following work, please refer to the “How to Report Issues” at the top of this section.

How do I change the email address associated with my account?

Please submit your request to our customer service portal ServiceDesk. Please include the current email associated with the account and the new email you'd like to use.

What do I do if my registration, survey, or somewhere else in PEER is frozen or stalled?

Refresh the web browser you are in and try again.
1. Press and hold Shift and left-click the browser’s Reload button.

  • Keyboard shortcuts to refresh:
    • PC: Press "Ctrl + F5" or press "Ctrl + Shift + R"
    • Mac: Press "Cmd + Shift + R"

What if the page still doesn’t load after refreshing?

As a web browser is used, it accumulates data and stores it in temporary files—cache files—to help pages load faster. These files normally get updated automatically as needed, but sometimes they can get stuck, causing a variety of possible problems. You can delete the stuck files and create new ones by clearing the browser’s cache. To clear cache:

1. Close all browser tabs that are running PEER
2. Follow the official instructions for your browser here: http://www.refreshyourcache.com/en/home/
3. Return to PEER and log-in, where you should be returned to your survey Dashboard and click the Resume button beside the survey you wish to continue.

How can I get past a certain question or instrument in the survey? When I enter a response, the survey sends me back to my dashboard…

We first recommend trying to delete your cache files (please see instructions on how to do that in the previous question). If that doesn’t work, please contact your organization using the “Get Feedback” link at the bottom of your screen, and they will issue a new instance of your survey to you. This unfortunately means you’ll have to start the survey from the beginning. We apologize for the inconvenience, and please feel free to let your organization if you would like to have a copy of your previous answers so you have them on-hand when filling out your new survey. Please keep in mind that the data from the original survey you filled out will still be available to view in “My Data.” This is a known bug and we are working to fix the issue. We greatly appreciate your patience with us and our evolving system.

Where can I find my responses?

Select the “My Data” button next to the dashboard button.

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How do I change a response to a question?

If you have not yet finished your survey, you can resume your survey from your dashboard. Once you are in your survey, scroll back through the question. If you have already completed the survey, you can click on “My Data” from your dashboard, select the survey you want to view, and search/select the question/response you want to edit.

Be sure to click Delete < Enter in your new response < Save. The survey will then prompt you to either “Keep Answers” or “Re-visit all questions.” It is very important that you understand what both options mean:

  • Revisit All Questions assumes you want to re-restart your survey from the question where you are editing and re-answer all questions following the question you are editing. Clicking Revisit All Questions will delete ALL responses to ALL questions that follow the one you are editing. The advantage of this is that if your answer changes impact the questions that come after (for instance, if you say you’ve had surgery, you get questions about that surgery, and if you say you have not had surgery, you do not receive those questions), the survey will be updated to reflect your new response (for instance, if you accidentally said yes you had surgery, changing your answer to “no” on the surgery question would remove the irrelevant surgery questions). This is the best option for you to use if you are not going too far back when you change a response.
  • Keep Answers will save your new response without removing irrelevant questions (though if your changed response triggers new questions, it may still bring these questions up for you to answer). It is the best option to user if you have already spent a lot of time on questions appearing after the question you wish to update.

How do I return to a skipped question?

If you have already completed your survey, you can:
1. Click on “My Data” from your dashboard. Search for the question you skipped by searching the keyword “skipped” in the response column
2. Click on the word “skipped”. This will bring you to the question in the survey that you had selected to skip
3. Enter and save your response
4. If your response triggers follow-up questions, you will be directed to those questions to fill in a response
5. Once completed, you will be directed to click “Survey Complete” and you will return to your dashboard

Can I enter information on behalf of my spouse, child, or someone else?

Yes, participants can create profiles for others such as their child, spouse, neighbor, etc., and serve as the sole managers of their profiles. This is most useful when a parent for example, creates a profile on behalf of their child and fills out surveys about their child, but the child is under the age of 18, therefore, is unable to create their own account and claim/manage their own profiles and health information.

Participants can also create profiles for others, but have the person manage their own profile. Participants can do this by creating a profile for "Someone else", and following the prompts to fill out the profile information, and then entering in the person's email to send them a profile claim request.

Participants can create profiles for others either during registration when they are first asked to create a profile for "Myself", "Spouse", "Child", or "Someone Else". Alternatively, participants who already have existing registry accounts can navigate to their profile menu by clicking on their profile icon, selecting "Select other profiles", and clicking "Create new profile".

How do I delete my data?

If you no longer wish to use the registry, please see the associated FAQ on how to delete your account.

If you wish to delete all of the data you entered in your surveys, but still keep your account, we recommend that you contact the organization hosting the registry, and ask them to archive your survey. Once the administrator archives your survey, it will no longer appear in "My Data".

If you wish to delete a few or some of the data you entered in your surveys, you must delete your responses individually. You can do this by navigating to "My Data", selecting the appropriate survey, and selecting the response to navigate to that particular question in the survey. Once you're in the survey, select "Delete" and "Save Changes". You will then be prompted to "Keep All Answers" or "Revisit All Questions". We recommend you select "Keep All Answers" to keep the remaining answers you've answered in the survey. However, if you wish to start the survey over you can select "Revisit All Questions".

For individuals who have deceased, how do I transfer their account to another family member, etc.?

To transfer accounts, please put in your request to our customer service portal, ServiceDesk. Please be sure to include the full name of the person whose account you wish to transfer, the email associated with the account (if known), and the new email address you'd like to use for the account.

How do I delete my account?

To delete your account, navigate to your profile menu at the top right of your dashboard, by clicking on your profile icon. Select the "Delete profile" option to delete all profiles associated with the account. If you have multiple profiles, you will be taken to the next profile associated with the account after deleting a profile. This will occur until you no longer have any profiles associated with the account. Once you are done deleting the profiles, you can log out and your data and information will no longer appear to administrators.

For Administrators

Below are common questions asked by administrators. The questions are sorted by the following categories: general, managing participants, survey development, portal development, registry data access and management.

General

Where do I find my portal's demo link?

Go to your portal menu < Settings < General Settings, where you can copy and paste the link to your demo portal.

Is there a way to send my portal demo link without having users create accounts?

Users who wish to preview surveys in the demo portal must create accounts. You can also create demo accounts on behalf of participants, but please keep in mind that the user will still need to accept the EULA from the user's account, if you choose to create accounts using the user's email.

What happens if I decide to close my registry?

If a sponsor chooses to close their registry, they will need to submit an IRB closure form indicating that they will no longer be operating a registry using PEER. Please refer to the IRB Closure page for the form template, instructions, and cost information.

In addition, Genetic Alliance will provide sponsors with the latest export of all their registry data (contingent upon participants’ privacy settings), and sample language to communicate to participants about the registry closure.

How do I create my survey in PEER?

We are currently working on developing more comprehensive documentation on this. For now, please refer to our "Using the PEER Survey Toolkit" powerpoint which reviews the PEER survey structure, all the question types, how to set dependencies, and more.

What is a topic v. instrument?

The hierarchy for building surveys are Topics < Instruments < Questions. Topics group related instruments together. Instruments group related questions together.

Before implementing your survey in PEER, we recommend that you first write out your survey in a Word document using the Topic < Instrument < Questions structure so that you can more easily implement your survey in PEER.

How do I know what questions types are available in PEER?

Please review our "Using the PEER Survey Toolkit" powerpoint which describes all the question types available for use in PEER.

Why can't I edit an instrument? Why is the edit button greyed out?

This usually means that the instrument is a Common Data Instrument (CDI). CDIs are pre-approved, validated instruments that are widely used for research; therefore, they cannot be edited. The benefit of using CDI is to enable cross-disease or cross-condition research in the future. If you would like to edit the question or instrument, we recommend that you re-create the instrument instead.

Is there a way I can easily move my question or instrument to another topic?

Yes, all questions and instruments that you create are automatically saved in our database. You also have access to all publicly viewable questions and instruments. Therefore, to move a question or instrument, all you have to do is click on plus button next to the topic or instrument where you want to add, and click "Assign Instrument" or "Use Existing Questions". You can then easily search and select multiple instruments or questions and add them.

For more information, please refer to the "Using the PEER Survey Toolkit" powerpoint.

How do I edit the text in my survey such as changing font colors, adding highlights, etc.?

PEER supports basic HTML formatting for you to format your text, add hyperlinks, or embed images. Please use the Simple HTML Formatting Guide for instructions how to add HTML formatting.

Once you have the HTML code you want to use, click on the </> button in the WYSIWYG to add in your HTML code.

A WSIWYG refers to the suite of formatting buttons that you see in the Question Editor Box as shown below.

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Can I insert hyperlinks in my survey?

Yes, you can do this using PEER's insert hyperlink feature in the WYSIWYG editor for all question types except info panels. If you would like to insert a hyperlink in an info panel, you can use a basic HTML code in the "Content" section of the Question Editor box.

HTML code: <a href=“[URL]” target=“_blank”>[HYPERLINKED TEXT]</a>

A WSIWYG refers to the suite of formatting buttons that you see in the Question Editor Box as shown below.

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The Question Editor box is where you can create and edit your questions as show below.

Screen%20Shot%202018-07-13%20at%202.04.30%20PM.png

Can I embed images in my survey?

Yes, you can use PEER's image wizard to embed images for all question types except the However, info panel questions. As part of the image wizard, you need a link to your image. Please submit a request in ServiceDesk with your image attached so we can upload it on the server on your behalf, and send you the image link. You can then use the link in the image wizard.

Can I change the format of my text in my surveys?

Yes, PEER supports basic HTML in the text edit box. Click on the </> symbol to view and enter in your HTML code.

Screen%20Shot%202018-07-12%20at%203.23.29%20PM.png

Please use the following HTML text formatting guide. To create a paragraph break please use <p> before the text.

How do I save my survey?

Your survey edits are automatically saved, although others cannot see the changes you make until you publish your changes. To publish your changes, click on the red "Save Changes" button. A message will appear saying "Are you sure you'd like to publish this survey?" Selecting "Save" will not make your survey available to your participants, but rather publish the changes to the system's publish database. Your survey will only be published (made available to participants) when you assign the survey to your portal.

However, if you saved changes to a survey that was already turned on, then the changes you save will be available to participants. Therefore, please make sure to publish the surveys that are turned on when you want to make the changes permanent.

How do I publish my survey?

Publishing your survey means to make a survey available to participants. To publish your survey, navigate to your portal menu < Surveys. In the "Assign Surveys" tab, click "Add Existing Survey", and search for the survey you want to publish. When you select the survey, the survey will automatically be added to your portal, but will be turned off. When you are ready to turn your survey on, select the survey frequency from the drop-down menu, and select the "Off" button to turn the survey on. If the survey is on, a green "On" button will appear.

How do I preview a specific survey without having to take previous surveys?

You do can preview surveys using our "Preview Changes" function in PST. Go to your portal menu < surveys < select the Customize Survey tab < Select survey, and click "Preview Changes".

How do I export my survey questions?

You can do this by going to your portal menu < Surveys < Customize Survey (grey tab) or by clicking on the edit (pencil) button next to the survey you wish to view < selecting the little cog next to the survey name.

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How do I download my registry data? How do I download specific sets of my registry data?

You can download your data in one of two ways listed below:

1. Go to your portal menu and selecting "Export". You can download your data based on a specific date range, with or without contact information, and for specific or all surveys.

2. Go to Search Registry Data, select "View Participant Data", select the surveys you wish to view, and click "Submit". Once your participant data loads, scroll to the bottom of the table, and select "Export user data" from the drop-down menu. You also download specific subsets of your data by selecting the check box next to the Foreign Key IDs of the participants. Then when you are ready to download, click "Export user data" from the drop-down menu, and select the "Selected" multiple choice directly to the right of the drop-down menu before hitting "Submit".

Portal Development

How do I create a feature, or update a feature on my registry landing page?

To create a new feature, go to your portal menu < features < Create new feature. Your feature can be a picture or a video. If you choose to use a video, your video must be a youtube link, and you would need to enter the Youtube code (which is specific section of your Youtube link). For example, if your link was: www.youtube.com/watch?v=rFal4sDW9Y, the youtube code is the portion after the "=" which is "rFal4sDW9Y".

Once you create your feature, navigate back to your portal menu < features < search for your feature and hover over the name of your feature < select the up arrow that will appears.

You can re-arrange your features or remove them by hovering over the feature name and using the corresponding up/down/remove buttons.

You can also update features by selecting on the feature. If you don't see the feature listed, search for the feature in the search box.

How do I enlarge my logo size in my "Theme"?

Unfortunately this is not possible at this moment. We recommend installing the logo above the iframe. An example of what this looks like can be found on the Pancreatic Cancer Action Network (PanCAN) registry page here: https://www.pancan.org/patient-registry/patient-registry.html.

What if I can't see my registry's theme changes?

Make sure that you click the "Publish" button to save and apply your theme changes. Clicking on this will also prompt you to give your theme a name. This is helpful for when you create multiple themes.

If you're still unable to see the theme changes, try logging out of PEER for Research, closing any tabs with the PEER registry or PEER for Research pages open, and clearing cache. To clear cache, follow the instructions listed here: http://www.refreshyourcache.com/en/home/. You do not need to clear browsing history - only the cookies and cache.

How do I embed my portal on my website?

When you are ready to embed your portal to your website, log into PEER for Research, navigate to your portal menu < view portal < get Code for website. Copy and paste the live link to your website. You may need to contact your web developer or administrator for additional information on where to embed the code. The registry will be embedded as an iframe so that it can seamlessly fit and appear within your website.

Managing Participants

Is there a possibility that participants can register multiple times?

While there are cases where participants forget whether or not they made registry accounts, PEER has an email recognition feature that prevents participants from creating multiple accounts with the same email. Participants can also use the forgot username, password, or challenge question links to recover their account information.

If a participant wants to change the email associated with their account, please have them reach out to the PEER team at gro.mroftalpreep|sutcatnoc#gro.mroftalpreep|sutcatnoc. Please be sure that the participant does not a create a new account with their new email address if they wish to update their email address.

Another potential case may be where the participant creates an account and profile for themselves, while someone else also creates a profile on their behalf. PEER does not have a feature to recognize whether a new participant has a profile or not. As such, our recommendation to avoid issues like this is to 1) have very clear communication about who it is that should be creating the account during registration and enrollment, and 2) have their registry coordinator monitor this over time. In general, there are few issues with this. We also highly recommend that sponsors relay to participants that individuals should talk to those who may create profiles on their behalf such as their family members, caregivers, etc. prior to creating registry profiles.

How do I pre-register participants?

Pre-registering participants is a great way to sign up participants after promoting your registry especially at a conference, workshop, or other in-person event. If you are looking to pre-register participants online, we recommend that you only do so after getting the participant's consent to do so.

If you are pre-registering in person, we recommend using laptops because the platform isn't mobile compatible (yet) or iPad-friendly. Below are instructions on how to pre-register your participants:

1. You or any member of your organization who is listed as an admin in PEER for Research can log in into the live registry using their log-in credentials.

2. Next, click on your profile menu (top right hand corner of your dashboard), and click on the option to "Select all profiles". You'll be then taken to a list of profiles associated with your registry account.

3. Click on "Create a new profile" and click the option to create a profile for "Someone else". You can leave this page up for when you want to start pre-registering.

  • Creating a profile for "Someone else" allows you to enter in the person's email, fill out profile information, and send a link to the participant's email inviting them to create an account to join the Turner Syndrome registry. The link participants receive also doesn't expire.

4. Once you finish creating the profile, you will be taken back to list of profiles associated with your account. You can click on "Create new profile" again when the next participant is ready to register.

We also recommend keeping a separate running list of emails and names of your pre-registered participants in an Excel sheet. This is because you won't be able to see who pre-registered in the system until they create accounts. Keeping a list of emails/names allows you to see who has yet to sign up for an account.

Furthermore, we recommend having staff members pre-register on the participants' behalf rather than have participants do this themselves. Alternatively, you can have staff be there as a guide for participants, and have them enter in their profile information and the Excel sheet themselves.

How do I contact my registry participants?

You can contact participants by exporting their email addresses and contacting them externally (outside of PEER), if participants have chosen to share their contact information with you.

We are currently working on an updated messaging and new scheduling feature for our portal sponsors. These features are being built as the part of the Healthy Mind, Healthy You study, a cross-condition study about the benefits of mindfulness practice that is being done using PEER. The features would allow registry admins to create custom email, text, and dashboard messages in PEER, link delivery of custom messages to specific actions, such as adding a new survey for participants, and schedule surveys to go out at specific times, whether that’s just once or on a recurring basis.

How do I archive participant surveys?

You can only archive surveys that are "In Progress" status. If this is the case, go to "Search Registry Data" in PEER for Research. Select "Search Participant Data", and the survey you wish to view. Search for the participant by using the filtering options in the table. Once you've identified the participant, hover over the "In Progress" status and a pop-up will appear that says "Archive this instance". Select the status and the survey will automatically be archived.

If the survey is already in "Complete" status, please notify the PEER team using ServiceDesk, and a member of our tech team will delete the survey on your behalf.

How do I delete participants?

At this time, portal sponsors cannot delete participants. To have participant profiles removed from your registry, please submit a request in ServiceDesk. Be sure to provide the Foreign Key ID of each participant. You will receive a notification in ServiceDesk once your participants are deleted.

Registry Data Access and Management

Will data from my demo portal be stored with data from my live portal?

The information inputted and collected from any user in the demo portal will be stored separately from the live portal data. You will also not be able to view the data from the demo portal using the Search Registry Data function. Instead, you can download this data using the export function. For a more complete overview on user testing, please refer to our User Testing section.

How do I edit participant data?

To edit a participant's data, go to "Search Registry Data" in PEER for Research. Select "Search Participant Data", and the survey you wish to view. Search for the participant by using the filtering options in the table. Next, hover over the survey name to view the participant's survey data. You can then see the participant's responses. Find the responses you want to edit, click on the "edit" button next to the response to pull up the edit box. Please be sure to first select "Clear" to clear the answer before entering in the new response and selecting "Save".

You cannot edit responses to the date picker question at this time.

How do I delete participant data?

To delete participant data, go to "Search Registry Data" in PEER for Research. Select "Search Participant Data", and the survey you wish to view. Search for the participant by using the filtering options in the table. Next, hover over the survey name to view the participant's survey data. You can then see the participant's responses. Find the responses you want to delete, click on the "edit" button next to response to pull up the edit box. You can then select "Delete" and "Save".

How do I delete participant surveys?

Admins currently cannot delete surveys. This must be done by a member of our tech team. Please report your request to us using ServiceDesk.

Is there a way to re-arrange my exported data, and do basic counts and percentages?

We recommend using Excel Pivot Tables to get basic counts and percentages of responses for each question and survey. Please refer to our documentation on working with PEER data outside of PEER [http://peerplatform.wikidot.com/registry-and-data-management:outside-of-peer].

What does researcher access look like?

You have control over who is invited to view registry data through the administrative portal, PEER for Research. Sponsors have the option to add researchers with the full range of administrative permissions as sponsors, or limit permissions to specific functions, such as allowing researchers to view data, while denying survey editing permissions.

Sponsors must also list potential researchers and/or other partners in their registries. This is essential so participants can see these entities in their privacy settings, and determine whether or not they want to share their data with these entities, and to what extent they want to share their data. Contingent upon participant permissions, researchers and/or partners will then see data from participants who have chosen to share in PEER for Research.

Genetic Alliance also has data sharing agreement templates that sponsors are welcome to use when deciding to work with researchers, and/or share exported data with researchers. However, ultimately, the nature of the data sharing is up to the sponsor. For example, some sponsors choose to share the latest data export with a researcher and charge for the exports. Other sponsors give researchers they work closely with an invitation to create an account in PEER for Research, so the researchers can have full access to the data.

How do I add a staff member, researcher, etc. to my portal?

You can easily manage your users and their permissions by navigating to your portal menu < Users and Permissions. Here you can see your list of current users, their user designation (researcher, super admin, staff member) and their permissions. When adding a new user, you can easily designate the user as a researcher, super admin, or staff member, and further adjust the default permissions.