1. DonateData.net
PCORI
Challenge
Submission
DonateData.net – A Summary
Introduction
DonateData (http://DonateData.net) is an online platform to enable patients to find and support
research studies by donating their medical data and for researchers to list their studies and engage
patients with latest research updates. The platform would allow patients to voluntarily “donate” their
clinical data obtained via patient portals (as downloadable CCR/CCD or Blue Button summary files).
DonateData aims to channelize the impending gush of patient-controlled data to accelerate and amplify
the scope of research studies. In addition, it gives researchers tools to engage patients with research
updates and other relevant information, thus helping bridge the translational gap of disseminating
research knowledge.
Problem
Research studies, specifically observational studies are severely limited in their ability to re-use
existing patient clinical data, often due to lack of electronic data availability or the need to protect patient
privacy and confidentiality restricts access to such data. Conducting longitudinal or cross-sectional
studies with even a few hundred participants can be painstaking, time consuming and expensive.
Moreover, the entire process is investigator-driven with little to encourage and motivate patients to
contribute towards the study. As a result, on the one hand realms of patient data remains locked in
institutional database silos with less than optimal availability for researchers to re-use them for answering
important healthcare questions. On the other hand, patients are barely provided any incentives or control
to decide how their data could be utilized to further research should they decide to support such initiatives
and more still, disseminate information about such research initiatives to other health consumers.
Moreover, researchers rarely interact or engage patients either in the research design process or with
providing them research updates or dissemination latest scientific findings. Patients usually are left to find
information through mass media, online searches or discovery through social networks.
Opportunity
Several trends such as those listed below provide a significant opportunity to disrupt the status quo.
• National efforts to increase adoption of Electronic Health Records and mandates to provide
patients a summary of their visit data (such as through blue button summary files, discharge
summaries in CDA or CCR formats) can create a landscape of unprecedented liquidity of clinical
data that is owned and controlled by patients. We believe this would be the much-needed step to
“unlock” potentially exabytes of data from the existing silos that curtail their full utility.
• Consumers are actively involved in using the Internet for health information seeking, self-research
and using tools to manage their condition. The web has transformed significantly over the last few
years, providing mechanisms for users to share, disseminate and aggregate into communities
rapidly, all of which is conducive to galvanize motivated consumers to help promote research
studies they believe in.
• Consumer support for raising awareness or supporting research is strongly established in the
cultural fabric of the nation; every year millions of Americans donate financially and materially
(such as participating in races, walks) to help the cause of eliminating hundreds of diseases.
Given these factors, we believe that DonateData is poised to be a significant game changer in
involving both patients and researchers in a collaborative manner to come together and advance science,
by patients donating their clinical data (which being generated from a healthcare provider organization is
more accurate than patient reported information) to research projects they believe in. We truly believe
that DonateData will usher in a new way for consumers to participate and contribute to research and
could potentially expand the scope of observational studies to include data from hundreds of thousands of
people, not just a few hundred.
DonateData.net
Applied
Informatics
Inc.
Page 1 of 6

2. DonateData.net
PCORI
Challenge
Submission
Solution: Key Features
Built as a community-driven KickStarter.com like platform, DonateData is designed to be a
platform to enable researchers at a given institution to create a consumer-friendly profile for their research
study and promote the same to garner support from potential participants (Figure 1). The site requires the
researchers to specify the details of the study such as its purpose, its intended application to society,
benefits to the individual and measures to securely handle their data (Figure 2 and 3).
Solu/on:'DonateData.net'
Users can search research
studies
Simple 1-2-3 step overview
of the service
Or browse research
studies
Applied'Informa/cs'Inc.'(TrialX)'
Figure 1. Home page of DonateData.net
Consumers can
Research'Study'Page''
increase awareness
about the study using
social media buttons
Consumer-friendly
study description page
containing the purpose
of the study, its intended Statistics to show how
benefits. the data donation
campaign is
progressing
Interested users can
volunteer their data by
clicking the donate
button
Applied'Informa/cs'Inc.'(TrialX)'
Figure 2. Research Study Details page
DonateData.net
Applied
Informatics
Inc.
Page 2 of 6

3. DonateData.net
PCORI
Challenge
Submission
Research'Study'Upload'Form'
Researchers can add/edit the study
description using easy-to-use rich text
editors.
They can even attach images and
videos
Applied'Informa/cs'Inc.'(TrialX)'
Figure 3. Research Study Edit form for Researchers to edit details
For each study researchers can specify small incentives (“rewards”) for participants based on the
level of their participation. For example, anyone who donates his or her data could be sent a t-shirt or a
gift card ($25-$50).
Patients/health consumers can volunteer to participate by uploading their data as blue button
summary files (or import their records from an online Personal Health Record or through downloadable
summary files known as Blue Button Files that are being promoted at the Federal IT level) (Figure 4).
Additionally, the system allows researchers to engage patients and to notify them complete ongoing
surveys if the need be or upload new blue button files (Figure 5).
Data'Upload'Process:'Access''
Consumers can choose what part of their
medical record summary would they like to
donate for the study. This allows them to have full
control of the information they are willing to
share.
In this case the user is willing to provide access
to their immunization and lab/tests sections
Applied'Informa/cs'Inc.'(TrialX)'
Figure 4. Data Donation Process. Users can choose what portions of their record
summary to donate
DonateData.net
Applied
Informatics
Inc.
Page 3 of 6

4. DonateData.net
PCORI
Challenge
Submission
Data'Upload'Process:'Protec/ng'Privacy'
By default patient identifiable information section
is marked red and not shareable unless the
patient explicitly decides to check it off and is
willing to provide their identity information to the
research team
Applied'Informa/cs'Inc.'(TrialX)'
Figure 5. Users can choose not to share their personally identifiable information
The system allows researchers to download the data uploaded by patients for the study (Figure
6). We are building sophisticated semantic query tools for researchers to query the donated patient data
(our company has an award winning clinical trials matching engine that uses medical terminologies to
achieve semantic data mining and this engine will be used in DonateData).
Figure 6. Researchers can download the donated data for analysis
DonateData.net
Applied
Informatics
Inc.
Page 4 of 6

5. DonateData.net
PCORI
Challenge
Submission
DonateData also provides researchers to send information to all study supporters providing them
updates and any preliminary findings that emerge from the study (Figure 7). DonateData will provide
consumers social media tools to promote the study to other patients including their personal network.
Figure 7. Message Broadcast Feature for Researchers
Figure 8. Message Feed for patients to receive updates from Researchers
All studies added to the site will be required to be IRB approved. These projects will also be
curated by the DonateData team. DonateData will also work with patient advocacy groups to promote the
studies to their patient populations.
DonateData.net
Applied
Informatics
Inc.
Page 5 of 6

6. DonateData.net
PCORI
Challenge
Submission
In short, we believe that DonateData could disrupt the way research studies are performed,
enabling researchers and patients to come together and conduct massive prospective longitudinal or
cross-sectional studies with data that could be garnered from hundreds of thousands of people. This
would be a transformative research model, truly making a subject, a valued “participant”. DonateData
would also open a new mechanism for millions of Americans to express their support for research
activities beyond traditional fund-raising, running races or other activities to support research.
Our Team
DonateData.net is being built by an award winning team of health care information technology
entrepreneurs and Biomedical Informaticians. The team has previously built groundbreaking applications
1
(TrialX.com) on personal health record platforms of Google health and Microsoft HealthVault. The
enterprise version of TrialX is currently being used at the Cleveland Clinic, Beth Israel Medical
Center/Harvard Medical, New York Presbyterian Hospital and University of Pennsylvania.
Our team won the developer challenge organized by the NCI and the Office of the National
2
Coordinator of health (ONC) in 2011 for its clinical trials search application, Ask Dory. We also won the
developer challenge organized by the ONC in 2012 for popEYE, an application that enables physicians to
3
send out automated reminders to patients via voice, SMS or email for preventive services.
1
http://www.sciencedirect.com/science/article/pii/S1570826810000636
2
http://www.hhs.gov/news/press/2012pres/01/20120104a.html
3
http://www.health2news.com/2012/02/22/pophealth-­‐tool-­‐development-­‐challenge-­‐winners/
DonateData.net
Applied
Informatics
Inc.
Page 6 of 6