Glossary - The Platform For Engaging Everyone Responsibly

All Researchers: The "All Researchers" setting lets you decide how your information should be share with any researcher in PEER. All researchers invited to join the platform come with research projects or protocols reviewed by an oversight committee called an institutional review board (IRB). The IRB oversight protects participants by making sure studies follow proper ethics guidelines. If you prefer, you can limit this setting and choose only certain researchers, groups, or individuals.

Co-Investigators/Co-Principal Investigators (Co-PIs): Assist(s) the PI of a research study with the design, implementation and overall conduct of the study, and can represent the study when the PI is unavailable.

Common Data Instruments: Instruments are sets of questions made to gather data on a specific topic. For instance, if you were developing a survey to assess patients' perspectives on new cancer treatments, you might ask participants to fill out an instrument measuring quality of life. In PEER, common data instruments are instruments used across the platform "in common". Using CDIs will save you time and effort, and will also ensure consistent data collection and analysis across the platform-making it easy for you to conduct cross-condition research in the future.

Community Guide Features: Community guides are members of your community who share their opinions about sharing, privacy, and data access within your PEER portal. Every PEER portal has three guides who help to represent different data sharing options to participants, and your landing page is the first place your participants will encounter them! Each feature consists of the guide's project video and feature image. The project video is where your guide shares his or her take on the project, and discusses his or her feelings on data sharing and access. The feature image is a screenshot from the project video superimposed with a quote from the video and a set of credentials (guide's name, guide's title and relationship to your project).

Community Privacy Directive: 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.

Demo Portal: An exact mirror of your live portal you can use to test your part launch. You should only test here, and never in your live portal. Since the demo portal exactly mirrors your live portal it is a good resource to share with potential partners or funders: here, they will be able to see the same things are your participants without contaminating live data.

Guide Titles: Your guide's title is typically your guide's profession, and/or your guide's relationship to your community. For instance, the IBCRF guide Neil Spector has the following title: Inflammatory Breast Cancer Researcher, Sandra P. Coates Professor at Duke University

Initiation fee: This is a one-time fee of $10,000 that you pay to set up and establish a PEER registry and portal. The cost of the IRB application review is included within the initiation fee.

Institutional Review Board (IRB): This is a committee that approves, monitors, and reviews biomedical and behavioral research involving humans. The primary goal of an IRB is to ensure that all human subjects in a study or research project are treated fairly.

Instrument: Just as surveys are made of topics, topics are made of instruments. Remember, an instrument is a set of questions designed to collect data about a specific thing (such as weight, medication use, diagnosis, or history of pregnancy), while a topic groups related instruments (so, if you had topics on gender, sex, and race and ethnicity, you could put them together in a topic called Demographic Information). In PEER you can choose instruments from the PEER CDI library (by Assigning Instruments), or you can enter them yourself (by Creating Instruments)!

Live Portal: The PEER portal your participants use. The live portal is only used to collect real data. You should never conduct testing here.

Newly-Released Data Analysis Platforms: Genetic Alliance occasionally works with academic, commercial, and, publicly-funded groups on projects that work to transform 'big data' into meaningful answers. Choosing 'Allow' means we will automatically include information you have indicated can be discovered or used in these projects. Choosing 'Ask me' means we will notify you about these opportunities when they arise and let you decide how you would like to share your information then. Choosing 'Deny' means we will not send you these notifications. Your data will not be included in these projects. You can change this setting any time, and it will take effect immediately.

PCORnet: Patient-Centered Outcomes Research Network: The "PCORnet" setting lets you decide how your anonymous data, survey responses, and/or contact information should be shared with PCORnet, the Patient-Centered Outcomes Research Network (also called the National Clinical Research Network.) PCORnet conducts patient-centered research to help patients, clinicians, and caregivers make informed decisions on medical care.

PEER Proxy Feature: Turning this on gives participants the option to authorize their sponsoring communities to act of their behalf. Participants can authorize sponsoring communities to enter health information, update account settings, and even update sharing, privacy and access settings.

PEER Survey Toolkit (PST): The PEER Survey Toolkit (PST) is where you will build surveys to use in your PEER portal. When building surveys you'll be able to use existing questions from the PST library, and create your own. PST can be accessed at any time through PEER Admin, at http://admin.peerplatform.org/.

Personal Profiles: Refers to participant profiles owned and managed by an account holder, either for the account holder themselves or for someone they are legally allowed to represent, such as a spouse, parent or child.

Principal Investigator (PI): The person in charge of the design, implementation and overall conduct of a research study and study personnel. Delegates responsibilities for certain study procedures (e.g. consent, analyses, manuscript prep) to study team members. Must be named on informed consent documents and screens (if relevant). If there are any complaints or adverse events this individual is responsible for informing the study sponsor (if different from the organization to which the PI belongs). In the case of an audit regarding complaints or adverse events the IRB will hold this person accountable.

Privacy Directives to Enter: In our IBCRF example, the privacy directives entered under the Enter Privacy Directives tab would be "Inflammatory Breast Cancer Research Foundation (IBCRF)", "Researchers recommended by IBCRF", "DiseaseInfoSearch.org-listed organizations serving your condition", and "Researchers recommended by any DiseaseInfoSearch.org-listed organization serving your condition". These will be different for your, depending both on your sponsoring community's identity and on the set-up of your preferences dashboard.

Proxy Profiles: Refers to participant profiles that, while not created and owned by an account holder, can be still managed by an account holder.

Portal Dashboard (Coming Soon): Your portal dashboard is a powerful tool for viewing your live portal's survey data in real time. You will be able to see how many individuals have responded to your survey (and to how many of your surveys), and will also be able to see those responses, if they have been shared with you. You will even be able to view individual participants' contact information, if this has been allowed! We are still in the process of building out the portal dashboard, but will be sharing more information about this with you soon. For now, you can access live data from your portal (once you launch) using the Export Data widget.

Preferences Dashboard: When your participants choose entities to share their data with, they see a screen listing: 1) types of data access and 2) organizations, communities, researchers, and other groups requesting data access (that is, your privacy directives). This screen, which is seen by each of your participants, is your preferences dashboard. For more information about customizing your preferences dashboard see Step 6 of filling our your General Settings. There, you will enter the privacy directives for which each of your participants will choose settings.

Public and Private Instruments: A public instrument in PEER is an instrument any community can put in their survey. Because they are used across the platform, questions in these instruments cannot be edited. A private instrument is one created by an individual community. If you make a private instrument, you can edit as you like, up until you launch your survey. As you develop instruments, consider making them public so others in PEER can benefit from your survey design work. If you're interested in this, talk to Matt Smith (gro.ecnaillaciteneg|htimsm#gro.ecnaillaciteneg|htimsm), PEER's survey specialist.

Referral Code: A code generated in PEER Admin that allows you to track outreach campaigns for your portal. You can generate codes to use in both paper and electronic campaigns, and if you'd like, you can associate specific privacy directives with a given referral code. Only participants who enter your PEER portal in association with this referral code will be asked to select data sharing, privacy, and access settings for the associated privacy directive. This can be helpful if you're conducting an outreach campaign with a partner who is interested in accessing participant data. Please talk to your Genetic Alliance point person if you'd like more information about referral codes.

Researchers Addressing Your Condition: PEER has a system that matches participants with researchers studying their condition. The "Researcher addressing your condition" setting let's you decide whether or not to include your information in this system, and whether to share data with researchers studying your condition. All researchers invited to join the platform come with research projects or protocols reviewed by an oversight committee called an institutional review board (IRB). The IRB oversight protects participants by making sure studies follow proper ethics guidelines.

Study Project Manager/Coordinator: Works hand in hand with the Principal Investigator of a research study to implement all study procedures. Usually handles all the day-to-day study requirements, including preparation of all study documents and databases, and communication with participants.

Topic: The PEER Survey Toolkit (PST) comes with three different "levels" for managing and grouping survey content: surveys (with which you are already familiar), topics, and instruments. A survey is built of one or more topics, while a topic is built of one or more instruments. An instrument is a set of questions designed to collect data about a specific thing (such as weight, medication use, diagnosis, or history of pregnancy), and a topic groups related instruments (so, if you had topics on gender, sex, and race and ethnicity, you might place them in a topic called Demographic Information). Topics are quite useful: not only do they help you to group your survey content in a way that makes conceptual sense; they can also be assigned to different surveys to save time and ensure standardization.