1. Introduction
PatientsLikeMe is an online patient network where people can connect with each other to better
understand their health conditions, share condition and treatment information, and get the support they
need to improve their health outcomes.
PatientsLikeMe is also a real-time research platform where patients provide real-world insight into their
experiences of living with and managing illness using clinically relevant tools to monitor symptoms and
outcomes, evaluate interventions, share their experiences, learn from others, and contribute to and
participate in research that matters to them.
Since our founding in 2004 we have actively engaged with patients to do research differently. Our
innovative network was built upon four core values and they continue to shape every decision we
make.
• Honor the trust patient place in us - Simply stated, this means “Patients First.” Our patients trust
us with their most valued health information and we honor that trust by advancing the knowledge
gained from this information.
• Openness - We believe that sharing health information is good because it has the potential to
drive massive change in healthcare.
• Transparency - We believe our patient members shouldn’t be surprised by anything we do with
the data they entrust to us.
• Create Wow - We want people to think, “Wow!” when they experience our site.
PCORI Patient-Researcher Matching Challenge
Connecting Patients to Each Other: Our Patients Page
PatientsLikeMe is uniquely positioned to address the matching challenge posed by the Patient-
Centered Outcomes Research Institute (PCORI) and Health 2.0. As a world leader in patient-powered
research networks we have the experience, knowledge and demonstrated expertise to connect
patients, clinicians and researchers in new era of healthcare measurement.
Fig 1.1 Screenshot of Patient Page
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2. We have over seven years of experience helping more than 180,000 patients find each other using our
advanced patient search tool available on our Patients Page. Filters for numerous variables search
through our comprehensive database of over 1500 conditions, 7000 symptoms, 14,000 treatments and
nearly 90,000 treatment evaluations.
Connecting Researchers to Patients: Our Clinical Trial Awareness Campaigns
Our Clinical Trial Awareness program has transformed the traditional clinical trial recruiting process for
academic and industry research partners. We work with our partners to build a campaign that reaches
thousands of patients about relevant clinical trial opportunities. We develop tailored communications to
patients who qualify for the targeted study. Since 2008 PatientsLikeMe has reached more than
100,000 patients through 30 customized Clinical Trial Awareness Campaigns.
From our PatientsLikeMe Partners dashboard any researcher can determine how many individuals on
the platform might be eligible for their trial based on the NCT trial number. Currently our fee-based
Clinical Trial Awareness program provides services to commercial, non-profit, and academic clients
interested in improving awareness of and enrollment into their trials.
Fig 1.2 Screenshot of Clinical Trial Awareness page
Connecting Patients to Researchers: Our Global Clinical Trials Tool
In 2011 we launched a feature that helps patient find research studies that are right for them. Our
Clinical Trial Tool, which updates daily with all the trial information listed on ClinicalTrials.gov
automatically matches patient members with every clinical trial they may be eligible for based on their
conditions and location. This award winning application is also available to non-patient members who
can use the sophisticated filtering system to narrow their options.
Recently, we unveiled our global clinical trials tool at Europe’s Healthcare Innovation Expo, hosted by
the National Health Service. Our Clinical Trials Tool is now the best international database of eligible
trials that incorporates support through an open Application Platform Interface (API).
This upgrade draws on open data to match patients from around the globe with relevant research
studies. It extracts data regarding trial criteria, relevant conditions, type of intervention, stage of trial,
and recruitment locations. Access does not require an account at PatientsLikeMe, but patient members
who log in to the site can create custom searches and save them for future use. When they return to
the Clinical Trials Tool, they receive an updated list of trials specific to their saved search criteria that
have been updated.
155 second street • cambridge, ma 02141 • 617.499.4003

3. Fig 1.3 Screenshot of Current Clinical Trials Tool search box
In addition to the ability to save searches, several features of the Clinical Trials Tool are notable
upgrades from the search functionality presented through ClinicalTrials.gov site. When patient
members explore clinical trials relevant to them, they can determine how many other members of
PatientsLikeMe may be eligible for the same trial.
To date, a number of users have reported that the Clinical Trials Tool has enabled them to locate and
participate in a trial near them. While PatientsLikeMe does not track individuals who reach out to a trial
recruitment center, over 7,000 users have requested further details on a given trial after their initial
search. Potential improvements to the tool could address benefit accessibility, capabilities, awareness
in the researcher and patient communities, as well as the overall practice of research and recruitment.
Of particular interest is the ability to identify improvements to research messaging and study
recruitment content.
Next Generation Improvements
Matching Patients to Researchers: Our Reimagination Proposal
PatientsLikeMe has the demonstrated experience and expertise needed to reimagine our innovative
technology to meet the PCORI and Health 2.0 Challenge. We have a track record of collaboration with
researchers interested in decreasing barriers to research participation and improving access to clinical
trials and research studies. Additionally, PatientsLikeMe are leaders in deploying patient-centric
technologies on the web.
We propose a series of improvements built upon our current matching functionality of our Patients
Page, our Clinical Trials Awareness Campaign and our global Clinical Trials Tool. We imagine an
environment that supports interaction and bidirectional communication among patients, clinicians and
researchers while providing an innovative, elegant and robust patient – researcher matching tool.
Our approach will be informed by all stakeholders and will include:
• Improvements to clinical trial search as described in detail below
• Identification and closing of preference gaps between patients and researchers
• Harmonization of clinical jargon and the “patient voice”
• Tools for researchers to identify not just populations of patients eligible for research studies but
also priorities of patients for participating in the studies
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4. • Broadened accessibility through:
o Improved language support
o Mobile access and device independence
o Enhanced smartphone enabled navigation to study location
o Platform independence through improved awareness of our reimagined patient-
researcher matching tool
Patient Goals and Patient Voice
Having acquired a set of information on the clinical trial searches users create and save, we can use
this information to test methods for research study searches that are enabled by patient preferences
and the patient voice. Currently, searches prompt for disease, location, gender, and age. In addition,
patients can indicate trial stage, type of intervention, and search by keyword. These additional features
are not immediately obvious to patients but may, in fact, be of greater relevance. We will examine what
features patients consider to be most relevant in their study searches, and the differences in evaluating
and potentially joining a study dependent on type of search, basic or advanced, and criteria searched
for. Based on this information, PatientsLikeMe can reprioritize components of the search functionality
and offer patients a more in-depth experience driven by identified priorities. For example, phase of trial
may be a feature that is of critical importance from a patient perspective and should be immediately
included in a given search to maximize the value of search results.
PatientsLikeMe has done an extensive amount of work in simplifying medical information and
eliminating jargon, as well as retaining the option for a patient to describe a disease in the manner most
familiar to them. One method to support this has been the creation of a “patient voice” ontology,
mapping frequently used terms from patient communities into common data elements. For example,
PatientsLikeMe supports searching for information regarding amyotrophic lateral sclerosis (ALS)
whether a patient refers to the disease by its full name, as ALS, as Lou Gehrig’s Disease, or as Motor
Neuron Disease or MND. PatientsLikeMe will improve capabilities to remap trial data into this ontology
as well, enabling patients using a less-familiar term for a disease or an incompatible term for their
disease to still determine which trials they may be eligible for.
Additionally, PatientsLikeMe will examine search histories, saved searches, and behavior of those who
have sought additional information on a trial to determine which studies they have found most relevant
when engaging in search. By identifying these “successful” trials, PatientsLikeMe can examine what
information in a trial description may be most interesting to a patient looking to participate in a trial that
impels them to seek additional information about that trial. PatientsLikeMe can use this data to inform
other patients with similar characteristics. For example, if a high number of male patients between 30-
40 years old with multiple sclerosis have sought additional information about a specific set of studies,
PatientsLikeMe can indicate that these are popular results.
Support for Researchers
In addition to identifying populations of interest, we can build broader researcher support into a patient -
researcher matching tool. By identifying study features of interest to patients, we can build a set of
common search terms used by individuals seeking studies in order to inform researchers writing
recruitment messages and providing study information to ClinicalTrials.gov. Additionally,
PatientsLikeMe can build a study form submission structure that simplifies submission to
ClinicalTrials.gov and allows for peer-production of recruitment messaging between researchers.
Exploration of past search data can highlight terms of significance to patients that may not be obvious
to researchers. These terms can be used to identify potential mismatches in patient goals vis a vis the
goals of researchers designing both studies and recruitment messages. A database of the high
performing or frequently accessed study descriptions would be immediately informative to researchers
struggling to identify the challenges most relevant to patients.
155 second street • cambridge, ma 02141 • 617.499.4003

5. While Contract Research Organizations have created business processes to support industry
customers assessing pharmaceutical, diagnostic, and device interventions, there is a dearth of
professional support for academic customers as well as organizations interested in less mechanistic
interventions around topics such as workflow improvements, patient engagement, or similar
approaches. PatientsLikeMe proposes creating a quick-start interface that can assist researchers
interested in these research approaches to create a study description for submission to
ClinicalTrials.gov. This would involve not only assessing current ClinicalTrials.gov requirements but
also creating a taxonomy for describing non-device or treatment agent based interventions outside of
the Stage 1, Stage 2, Stage 3 nomenclature.
PatientsLikeMe is founded on the concept of collaboration between clinicians, researchers, and
patients. We believe that environments where individuals can learn from their peers improve outcomes
across a number of spaces, including how to best solicit participation in research studies. Currently,
PatientsLikeMe is building the architecture for patients and researchers to collaborate on the creation of
Patient-Reported Outcomes Measures. We envision the potential for a similar collaborative
environment for study recruitment messages. Investigators could pose draft language to a cohort of
both peers and potentially interested patients and receive feedback on salient points, resonant
language, and more patient-meaningful measures and endpoints. Our community includes nearly
200,000 patients with over 1,500 medical conditions, and many patient members are looking for places
where their input can enable the healthcare and medical research system to flourish and reach the full
potential of a continuously learning health system.
Language Access
Language access is a more difficult challenge. Research study descriptions are frequently jargonistic
and use numerous medical terms. Beyond issues of simple terminology translation, there are additional
levels of difficulty that arise from health literacy levels. While we envision that a researcher study guide
could lower some of these barriers, computational linguistics currently do not offer any ready-made
solutions for translating medical jargon into foreign languages. PatientsLikeMe will strive to include the
most up-to-date translation tools and advocate for clinical trial messaging that is relevant across health
literacy levels.
Mobile Development
We envision two strategies for continued mobile development. Currently, the Clinical Trials Tool is
available in mobile browsers but is not optimized for mobile devices and tablets. We propose optimizing
the current Clinical Trials Tool for use on mobile browsers as well as building a standalone an
application (app) with capabilities enriched by access to the device’s location data. We believe this
multi-device approach will expand the Tool’s research and provide better patient-resaerch study
matching.
Mobile health technology has yet to attain broad dissemination in the public. Only twenty percent of
smartphone users report downloading a health-related app. The vast majority of health apps
downloaded by users are fitness apps, with chronic condition disease management apps making up a
small (2%) percentage of total downloads (source: 2012 study by the Pew Internet and American Life
Project). Health information provisioning apps are an additional minor subset. The WebMD app has the
highest penetration among these apps, at four percent. Slightly more than thirty percent of all
smartphone users, on the other hand, report using the Internet on their mobile phone to search for
health information.
Because mobile browsing for health has higher penetration than standalone mobile apps for health, the
most immediate means to improve accessibility is through optimizing the our matching tool for mobile
browsers. Mobile users, by default, inform websites that they are accessing those platforms via a
mobile browser. PatientsLikeMe will offer a website that renders the search engine and corresponding
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6. interfaces in either a simplified format or as a series of search options, rather than enclosing all
information on the initial page.
The most critical reasons to create a standalone “app” versus optimizing a website for a mobile device
are accessing geospatial location data and better matching the ways by which mobile and tablet users
interact with the Internet through these devices. PatientsLikeMe proposes constructing a patient –
researcher matching tool that leverages geospatial data on the user end to populate a more appropriate
list of nearby studies and provide navigation to them. Additionally, a more simplified user experience
could be presented in a stand-alone app versus the limits imposed by mobile browsing.
Conclusions: Technology Creation v. Technology Proliferation
One of the greatest challenges in the use of the technology has less to do with the design of technology
or the writing of lines of code and more to do with building awareness that technology exists.
Frequently, the assumption is made that individuals interested in their care will exhaustively seek out
effective solutions (i.e., if we build it, they will come). Systems created by researchers, specifically, may
aptly or effectively encapsulate a problem and create a well-posed solution, but not transition beyond
initial stages of implementation or demonstration of efficacy.
To that extent, we would propose that any further development of our Clinical Trials Tool into a
reimagined patient - research matching tool be accompanied by a broad messaging campaign with
financial support from PCORI. Currently, the Clinical Trials Tool is a component of PatientsLikeMe’s
platform, but it is not immediately obvious to members accessing the site for the first time. Additionally,
capabilities for researchers are not immediately obvious to potential collaborators. We would hope to
engage with PCORI to build awareness of these resources across both funded PCORI researchers and
the broader research community. There is no need to reinvent the wheel and build search interface
after search interface on top of publicly available data. We believe that it is more apt to focus on
incremental search improvements and increased capabilities of existing resources that have been
demonstrated as valuable to the patient and researcher communities in more limited contexts and seek
to expand their reach to meet patients and researchers in their lives and work flow.
155 second street • cambridge, ma 02141 • 617.499.4003