White Label Project (funded by Robert Wood Johnson Foundation)
Now accepting applications to join the White Label Project!
With this request for proposals (RFP) Genetic Alliance invites organizations, communities, projects, programs, and other collectives interested in health to participate in creating a survey, registry, or campaign using the Platform for Engaging Everyone Responsibly (PEER). PEER enables individuals to share health information on their own terms. This allows trusted communities to collect information, and help advance health for their members while addressing issues that matter to them.
Genetic Alliance will choose sixteen organizations interested in health to utilize PEER to engage their communities in participant-centric research. Ten of these slots will be given to community-based organizations serving marginalized communities, and six slots will be given to disease-related advocacy organizations. These organizations will help Genetic Alliance to assess the experience of PEER sponsors, for the platform’s ease of use and also for their participants’ reaction to sharing. This project is supported by a grant from the Robert Wood Johnson Foundation (RWJF) and RWJF staff will participate in it and monitor its progress.
Request for Proposals Released: February 8, 2016
Question Period: February 8-17, 2016
Questions and Answers Released: Ongoing
Proposals Due: March 17, 2016, 11:59 PM EST
Applicants Notified of Decision: (new date) Friday, March 25, 2016
Since 2003, Genetic Alliance has managed a patient-built and -governed, cross-disease research network for participant-centric research on a variety of diseases, known as the Genetic Alliance Registry and BioBank (GARB). Participants in GARB have powered many studies, peer-reviewed papers, clinical trials, and even post-marketing drug studies. In 2008 Genetic Alliance began to expand this vision, working with technology partner Private Access to develop improved ways for individuals to grant faster, easier, and less costly access to otherwise confidential information in order to improve care or accelerate research. These efforts culminated in the development of a novel platform for participant-centric research networks, the Platform for Engaging Everybody Responsibly (PEER). PEER is a cross-condition platform with a number of remarkable characteristics. The platform empowers individuals to share health information with each other and researchers on their own terms, by setting sharing, privacy, and data access preferences within a dynamic and granular system made possible by PrivacyLayer® technology from Private Access. This system provides the flexibility needed to engage diverse opinions around data sharing, while creating the opportunity to participate in multiple research projects over time.
Since PEER's official launch in 2011 Genetic Alliance has launched 25 registries for a variety of conditions and non-disease communities, all using PEER technology. As the registry has expanded, however, Genetic Alliance has identified a need for an improved system which will permit participating communities and organizations to build registries quickly and efficiently.
In 2015 Genetic Alliance received a $500,000 grant from the Robert Wood Johnson Foundation to 'white label' PEER, allowing many groups to set up registries as simply as they could set up a Facebook account. The 'white label' version of PEER includes a simple dashboard and standard operating procedure to facilitate easy customization of the system by organizations and collectives wishing to offer it to their communities. The new system is designed to be exceedingly easy to set up and deploy, and as part of the grant thirty new organizations and collectives will come on to the platform to "test" its ease-of-use, both for themselves and their members. Fourteen of these pioneers were selected through a competitive award process in early 2015. The next sixteen will be awarded through the current RFP in March 2016. As a part of winning this award, the organization or collective will share feedback with Genetic Alliance, to help improve the experience of setting up and deploying a registry using PEER.
Phase I Awardees:
In the first phase of this grant Genetic Alliance awarded fifteen organizations interested in health to utilize PEER to engage communities in building registries and/or conducting surveys. These organizations are also helping Genetic Alliance to assess the experience of PEER participants as they make decisions about data sharing.
- American College of Nurse-Midwives
- ARPKD/CHF Alliance
- Asthma and Allergy Foundation of America
- Beyond Batten Disease Foundation
- Celiac Support Association
- Centre for Health, Law and Emerging Technologies (HeLEX)
- Center for Jewish Genetics, a cooperative effort of the Jewish United Fund/Jewish Federation of Metropolitan Chicago and the Ann and Robert H. Lurie Children's Hospital of Chicago
- The Fibrolamellar Registry
- Gastroparesis Patient Association for Cures and Treatments
- Medical Investigation of Neurodevelopmental Disorders (MIND) Institute and Center for Excellence in Developmental Disabilities at University of California, Davis
- National Alopecia Areata Foundation
- Spastic Paraplegia Foundation
- Syndromes Without A Name USA
- Turner Syndrome Society of the United States
Frequently Asked Questions
Once the Request for Proposals (RFP) has been released, you should follow all directions stated in terms of applying. Email Yulyia Ilchyk with any questions.
All applications will be due on March 17, 2016 at 11:59pm EST. This FAQ will be updated with questions and answers as they arise. Please submit questions to Yulyia Ilchyk.
Genetic Alliance will provide guidance for creating and maintaining a registry or campaign, the necessary documentation, outreach guidance, a state of the art technology platform and institutional review board review. NO FUNDING IS AVAILABLE BEYOND WHAT GENETIC ALLIANCE WILL CONTRIBUTE FOR YOUR PORTAL DESIGN, DEVELOPMENT AND HOSTING, AND YOUR IRB REVIEW.
Genetic Alliance invites a wide spectrum of organizations and collectives dedicated to or interested in health to participate in creating a registry! These collectives and organizations will not fall into a single category. Rather they should have different populations of interest and/or campaigns.
We are interested in ensuring the sixteen award winners are diverse in multiple ways, including race, ethnicity, socioeconomic status, geography, and include traditionally underserved and underrepresented communities. Furthermore, we are looking to test the platform with non-disease centered communities, e.g., public interest, environmental, minority, education, social justice, civic groups etc., that could use health research to prove their goals. We are also interested in non-traditional collectives or affinity groups, e.g., employees of company, gyms, churches or temples, day care centers, clubs, playgroups, prenatal classes, and so on.
For-profit organizations and collectives can only apply if partnered with an organization/collective that is not-for-profit.
The fees associated with setting up and implementing a PEER portal ($20,000) will be waived for the participating organizations. Monthly fees associated with maintaining the portal will be waived until September 1, 2016. See the table in Appendix B in the RFP for further details about monthly fees. Each organization/collective is responsible for their outreach efforts associated with creating their registry or portal. The grant will not cover these outreach efforts.
We would like to develop the portal over the first three months and have the organization/collective outreach be the focused over the following three months. All portals must be launched on or before September 1, 2016
The expense of creating and running a registry, survey or campaign varies a great deal. Small organizations with only one staff person run wonderfully dynamic projects. Some large organizations have a hard time staffing such a project. The fees associated with setting up and implementing your PEER portal ($20,000) are waived for the participating organizations. Monthly fees for maintaining the portal will begin on September 1, 2016 (all maintenance fees before this date will be waived). The majority of each organization/collective’s efforts will be spent on creating and executing an outreach plan. Each group should be prepared to allocate the proper resources to ensure that this process is a success. This can only be determined by your organization.
Please see Appendix B in the RFP for monthly fees after September 1, 2016. The rates are very reasonable and have a protection built in for an organization with limited funding.
Absolutely. Both large and small organizations/collectives are encouraged to apply. As long as the applicant meets the eligibility criteria and completes a full application, we will be able to consider your organization/ collective in the selection process.
The "number of participants" refers to the total number of registered participants, not monthly participants. This number is expected to grow each month.
To avoid creating a financial burden for groups, if the monthly feeds based on the standard tier pricing (in Appendix B) are greater than the Financial Means Limit (a monetary ceiling that decreases the monthly fees to 1/12th of 2.4% times your total operating cost for the previous year), $200/ month (1/12th of $2,400 per year). For example, if your organization’s total operating costs last year were $200,000 you would pay no more than $400 as a monthly fee regardless of how many participants you enroll in your PEER registry/ survey.
We suggest that you include non-vendors who are key decision makers. Therefore, this distinction is based on your discretion.
There will be a total of 16 groups/collectives enrolled in Phase II; however, for each group there is no standard number of participants that each awardee must recruit.
Yes, so long as you are entering as an organization/collective. Individuals themselves cannot apply.
PEER is unlike standard registries for several reasons. PEER enables individuals to share health information with each other and researchers on their own terms, by setting data sharing, privacy, and access preferences within a dynamic and granular system made possible by our partner Private Access’ PrivacyLayer® technology. This approach enables individuals to share data over time, even as their own needs change, and indicate their preferences based on their own life course and events. Further, your members/participants can also indicate co-morbidities and will be served by other surveys in the system. The registry contains 10,000 diseases and their subtypes. Using PEER also connects your member’s data to Disease InfoSearch (DIS), GaugeRx and Navigating the Ecosystem of Translational Science (NETS), all of which are explained in greater detail on the previous page in the "Additional Information" Section
The Platform for Engaging Everyone Responsibly (PEER) enables participants and their caregivers to share their clinical information and biological specimens within an environment that provides the look and feel of familiar, trusted communities, under access-permission rules defined by the participants themselves. The system allows participants to set data sharing, privacy, and access preferences, and manage their information in a dynamic and granular system. PEER includes a simple dashboard and accompanying directions to facilitate development of individual organization’s PEER portal. Using the dashboard and standard operating procedure, organizations and collectives determine the focus of their registry or campaign, design their portal, choose community guides, configure privacy, sharing and access options, and determine which common data elements and validated instruments to use in portal surveys.
Disease groups, community organizations, and self-organized groups of people (e.g. employees of a company, members of a gym or a church) can use PEER to conduct surveys and/or build a registry. An example of PEER deployed for a disease group can be found here: http://jsrdf.org/jslife-demo/. We recommend all applicants visit this portal, sign up, and create a profile, and test the system to better understand what it offers.
For additional information, please reference our PEER webpage.
Individual users indicate who will have access to their data, and how. The system provides granular and dynamic access controls to empower individuals to determine their sharing, privacy and data access preferences. Access to the data is based on the expressed wishes of the individuals themselves.
Here’s how it works. When users make a new profile, they start with your organization’s recommended sharing, privacy, and data access settings as their default. These default settings are based on what each organization feels their community would feel comfortable with, balanced with what would make the best use of participant data in relation to your organization’s or project’s goals. After participants create their accounts, they have the option to review and edit their default privacy settings (Figure 1). If desired, participants can edit these settings on their own, or with the help of a community guide, who recommends settings for individuals with low, medium, or high concerns about privacy (Figure 2). Participants can come back and change these settings at any time.
Examples of entities that could have access to participants’ data with participant approval include researchers recommended by your organization, vetted researchers addressing the a condition which your organization serves, designated support groups listed with our DiseaseInfosearch.org resource, and data analysis platforms such as PCORnet and the Genetic Alliance Translational Research Network.
Figure 1: After creating their account, participants have the option to edit privacy settings.
Figure 2: Participants can edit their privacy settings on their own, or with the help of a community guide.
PCORnet, or the Patient-Centered Outcomes Research Network (also known as the National Patient-Centered Clinical Research Network or the National Clinical Research Network), conducts patient-centered research to help patients, clinicians, and caregivers make informed decisions on medical care. PCORnet is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI) designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data and patient partnerships. In the process, it is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.
Genetic Alliance accelerates the discovery and development of tests, devices, and therapies through community engagement and advocacy. From time to time, they develop a research study and obtain IRB approval.
Choosing “Allow” for this entity means Genetic Alliance may use the information participants have indicated can be discovered or used in these studies. Choosing “Ask Me” means Genetic Alliance will notify participants about these studies and let participants decide whether you would like to share their information with them. Choosing “Deny” means Genetic Alliance will not send participants these notifications, and that participants’ information will not be included in any of these studies.
The data is accessed by researchers who have access to only the data in which people have given them access to. In other words, someone might register through your portal (ABC Foundation) and state that they have a particular phenotype or characteristic. They might indicate that all researchers interested in this phenotype can access their de-identified data. Another person with the same phenotype might register through a different portal. They might indicate that all researchers interested in this phenotype can access their de-identified data. BOTH individuals data are included in the query results sent to the researcher. Neither organization controls which researcher gets those data. However, if the first individual had said DENY to all researchers working on their phenotype, and ALLOW to ONLY researchers recommended by the ABC Foundation, then only those researchers recommended by your foundation get access. .
The PEER system has a number of databases associated with it, all managed on HIPAA compliant servers. All data is secured using enterprise-standard security and privacy systems developed by Private Access, a company with expertise in novel internet security platforms.
The individual participant owns his or her data in the registry. The granular privacy or sharing settings within the PEER Platform allow each participant to choose with whom to share these health data.
Credentialed researchers will use the data, so all of the typical safeguards are in place to prevent unauthorized use and misuse of data.
The focus of your organization or collective’s registry or survey is dependent on the questions that are most important to your community.
Yes, each group brands their own project.
Your portal will be accessible using a smartphone or tablet's web browser, but such access is not optimal. There is not yet an app for PEER, but we are seeking funding for it.
Yes, however, Genetic Alliance has its own IRB which we will provide at no cost to you. In 2003, we established the Genetic Alliance Institutional Review Board. Each organization will complete their own IRB application using Genetic Alliance’s template.
Awardees must use the Genetic Alliance IRB, the fee is included in the award. The Genetic Alliance IRB has reviewed 25 of these projects and has resolved every possible question and concern. New IRBs, not familiar with this system, will take time that we cannot afford. The PEER platform has Western IRB approval, and the projects are submitted to Genetic Alliance IRB.
Yes, we have the ability to import and map data. That is beyond this project, but it can be considered concurrently. There will be a charge for our engineers to build the import tool and the mapping.
It has the capacity to do so, and we have mapped the solutions, but we have not secured the funding yet for this part of the build out. We allow reports to be uploaded. We expect to integrate with the next generation of Blue Button.
No. But, you can use REDcap at the present time for exports and data mining. In the future, i2b2 and other data analysis tools can be used.
- We would like to make reporting as easy as possible. Genetic Alliance will hold conference calls to elicit feedback on the system. The portal itself has a dashboard that will give statistics such as recruitment; however, we will ask for some stats from you, such as how many people you have reached and engaged in your community.
Disease InfoSearch (DIS) is a resource for patients, researchers, and clinicians that provides is a collection of quality information on over 13,000 conditions with corresponding foundations and support groups.
GaugeRx is an interactive, web-based analytics, and assessment tool designed to support decision-making in drug development. By assisting advocacy organizations, pharmaceutical companies and other health care stakeholders to pinpoint possible areas of collaboration, GaugeRx will enable a variety of new partnerships within the translational science space, leading to new and improved treatments and therapies.
- Navigating the Ecosystem of Translational Science (NETS), NETS, is a web-based map. Its associated toolkits are designed to educate and empower participation in translational research. Feedback from GaugeRx will direct participants to relevant information within NETS.