The document discusses improving patient engagement in clinical trials through digital methods. Only 2-5% of cancer patients currently participate in clinical trials. The top 3 solutions identified to engage patients were: 1) a clinical trial finder for patients to inform them of available trials, 2) virtual clinical trials conducted entirely online, and 3) tools to personalize clinical trials to individual patient needs/preferences. The document reviews several companies providing these types of solutions and proposes an experiment partnering with a CRO to test if a digital intervention increases patient enrollment and retention in a clinical trial compared to a control group without a digital intervention.

1. Partnering with
Patients for Clinical
Trials
2016 A HealthXL Report on improving patient engagment in clinical trials
The Leading Global Platform for Digital Health Collaboration

2. 2
Table of Contents
Editorial
The Challenge
Catalysing the Community: Clinical Advisors
Marketplace Review
Suggested Experiment
Your Personalised View of the Digital Health Market
Appendix 1 - Market Breakout
3
4
5
7
11
12
14

3. 3
Editorial:
Patients as Partners in Clinical Trials
Only 2-5% of adult US cancer population is enrolled in Clinical Trials
The pharmaceutical research enterprise is under tremendous pressure to innovate in order
to discover new drugs and commercialize their portfolio more effectively. The average cost
to develop a drug is $2.6 Billion and takes 10 yearsi. This model is unsustainable. To make
matters worse, upon launch, enterprises learn that patients may not value the intervention
as expected.
Traditionally, clinical trials have suffered from a number of challenges including enrolling
patients, identifying trial sites, reducing study drop-off rates, to name a few. 80% of industry
clinical trials do not meet patient recruitment timelines and the current drop-off rate across
all trials is 30%. There is also increasing pressure on clinical trial providers to become
“patient centric”, to leverage technology, and to push the envelope on how health is
measured.
What’s the solution? How does one create a more effective research enterprise? The answer
is more straightforward than we might think – partner with patients. Lets make patients
consider clinical trials a care option.
A number of key trends make this easier. First of all, patients are more self empowered than
ever before and are seeking to get involved. Solutions can further streamline the process by
meeting patients where they are – making the clinical trials easy, convenient, and
accessible . Virtual clinical trials, remote data capture via wearables, and research through
care delivery are just a few things that can delight patients while improving the overall
research process.
For example, in the area of oncology, a number of care solutions aimed at providers capture
tumor type underlying genetics, and treatment effectiveness – which can act as parameters
to assess trial eligibility. Further, a number of patient communities and real-world evidence
solutions enable researchers to access patients and learn about patient’s needs more
directly, and even enable patients to co-design studies.
With all the changes happening within clinical trials, we invite you to read this report that
highlights a number of solutions and approaches to next-generation clinical trials.

4. 4
HealthXL Challenge
Improve patient engagement in clinical trials by creating a landscape in which it is
simple for a patient to find and participate in a clinical trial. Patients consider clinical
trials as a care option and have the power to find out themselves which clinical trial
they are eligible for.
Vision
Taking cancer patients as a model group, the challenge is to meet the planned
enrollment of patients in 90% of trials and to reduce patient ‘drop-off by 20% in trials
via the implementation of digital methods to improve the patient experience in
clinical trials.
Challenge
• Involve the patient at the earliest possible planning stages to ensure the trial
design and protocol will match a patient’s lifestyle and needs.
• Empower the patient to be able to identify the trails that he/she are eligible for
without the need to always go through clinical providers and clinicians.
• Explore other technologies that offer the patients the opportunity to connect and
engage more meaningfully with both clinical trial organisers and other patients.
Defining the challenge

5. 5
Industry Advisors
HealthXL has a large and growing community of advisors made up of clinicians, healthcare
industry professionals, venture capitalists, payors, serial entrepreneurs, and innovators.
The top experts in patient engagment in Clinical Trials within the HealthXL community are:
Catalysing the Community
Martin Kohn
Chief Medical Scientist
Sentrian
Martin Naley
Founder
Cure Forward
Colm Galligan
Medical Director
MSD
Dr Galligan has extensive experience
in setting up multinational phase 2,3 &
4 clinical trials as well as supporting
the development of Investigator
Sponsored studies
Dr. Kohn is an alumnus of MIT, Harvard
Medical School and NYU and is a fellow of
both the American College of Emergency
Physicians and the American College of
Physician Executives.
Martin is the founder of Cure Forward,
who help people get tested, get their
data, and then put their data to use to
understand their disease and find
options for treatment, including clinical
trials.

6. Brendan Buckley
Chief Medical Officer
Icon
Jamie Goldfarb
Patient Advocate
Cindy Geoghegan
Patient Advocate
Brendan has extensive experience in
clinical trials and chairs several
independent Data and Safety
Monitoring Boards for medium to
large cardio-metabolic and rare
disease clinical studies
Cindy and Jamie are both cancer
survivors, Cindy a breast cancer
survivor and Jamie melanoma. They
both now represent the patient
community as advocates, and each
participated in clinical trials that led to
the treatment of their cancer.
Industry Advisors
Catalysing the Community
6

7. 7
HealthXL reviewed the digital technology marketplace, focusing on companies that could
potentially address the Challenge set.
Solutions that addressed the challenge set were found to have one of more of he following
capabilities: patient finder for clinical trial (CT) organiser, CT finder for patient, CT finder for
physician, virtual clinical trial, tool to personalise clinical trial for patients, education, real
world data leverage, electronic informed consent software, ride share company to get
patient to CT.
Solutions that put the patient at the centre of the clinical trial were selected as the most
effective at engaging patients in clinical trials. HealthXL chose the top 3 capabilities
addressing patient engagement in clinical trials. They were 1) CT finder for patient, 2) virtual
clinical trial, 3) tool to personalize clinical trial for patient,.
Marketplace Review
CT finder for patient
Virtual clinical trial
Tool to personalize
clinical trial for patient
Online database of ongoing clinical trials informing patients what CTs specific
to their disease are available.
Clinical trial that is conducted online - from patient enrollment to measuring
biometrics, to monitoring progress.
Aids patient in finding clinical trial suited exactly to their disease
type and needs.

8. 8
Companies Designing Clinical Trials for Patients
Name
Science 37
Mytrus
ePatient
Finder
Patients Like
Me
Thread
Research
Circulation
VitalTrax
TrialX
Transparency
Life Sciences
See Appendix 1 for description of companies listed.
Software to
streamline
patient
recruitment
Database for
patients to source
clinical trials
Metasite
mobile based
CT paltform
Remote patient
reserch platform
Database for
patients to source
clinical trials
Leverages real
world oncology
data to improve
CT design
Electronic
informed
consent software
Ride share to get
patient to trial
site.
Connects
physicians to
CTs for their
patient
Crowd Sourced
Clinical Trials
platform
Writes and
organise CT info
in a easily
understandable
way
Patients educate
each other on
CTs available
Strata
Oncology
Match late stage
cancer patients to
clinical trials
Patient
Finder for
Clinical Trial
Organiser
Clinical Trial
Finder for
patient
Clinical Trial
Finder for
Physician
Virtual
Clinical Trial
Tool to
Personalise
Clnical Trial
for patients
Education Misc.
Flat Iron
Custodix
Custodix is the
driving force
behind real world
data collection

9. Patient
Finder for
Clinical Trial
Organiser
Clinical Trial
Finder for
patient
Clinical Trial
Finder for
Physician
Virtual
Clinical Trial
Tool to
Personalise
Clnical Trial
for patients
Education Misc.
9
Companies Designing Clinical Trials for Patients
See Appendix 1 for description of companies listed.
Crowdsourced
database of all
clinical trials
Assists in finding
personalised
CTs for patients
via Trial
Exchange
forum.
Cure
Forward
Kayentis
Open Trials
Antidote
FindmeCure
One Voice
Neoclinical
Clinithink
Double
Blinded
Trinetix
Molecular
Match
Connects patients
with clinical trials
Provides
genomic
sequencing test
for patient
Educates
patients on the
science behind
their cancer
Helps patients
understand
treatments that
are available
Patient
community for
Orphan Disease
patients
Database for
patients to source
clinical trials
Registered nurses
help patients to
find clinical trials
Provides lists of
patients based
on trial protocol
eligibility
Motivational
messages, alerts,
reminders,
integrated into
eCOA solution
Crowd Sourced
Clinical Trials
platform
Helps cancer
patients find CTs
Helps cancer
patients find CTs
Name
Through
screening and
referrals, finds
patients for CROs
Researchers can
see patients
with specific
genetic data on
Trial Echange
Forum.

10. 10
Capability CT finder for patient – informs
patient on ongoing CTs
Antidote connects patients with
clinical trials by organizing the
world’s research information and
presenting it to patients.
How do they
engage the
patient?
Partners
Based
Founded
Science 37 is a mobile based
clinical trials company that
removes geographical barriers
for patients allowing them to
bring research into their homes.
Cure Forward provides patients
with a genomic sequencing test
which they can use to find their
best suited clinical trial via
clinical trial exchange.
Antidote Match uses NLP and AI
to help people find their best
clinical trial match.
Antidote Connect Network is an
online network of health portals,
patient organizations and
advocacy groups aiming to
connect patients to clinical trials.
Mobile app Nora is a technology
platform that integrates
telemedicine technology into the
clinical research process enabling
patients to engage in remote
clinical trials.
JDRF, Healthline, CentreWatch,
GALAXY
Science 37 has 29 partners such
as Genentech, Novartis, Naked
Biome, Harvard Clinical Medical
Cureforward has 12 partners
including Novartis and Quintiles, 3
non-profit organisations such as,
Fight Colorectal Cancer and
Diagnostic Test Providers such as
Cynvenio.
UK and US California Boston
2010 2014 2014
Virtual Clinical Trial Tool to personalize clinical
trial for patient
Cure Forward’s process is 3
steps:
1.Patient receives genomic
sequencing
2.Patient receives test results
3.Patient can post themselves of
clinical trials exchange to find
best suited trial.
Company
Deep Dive

11. 11
Suggested Experiment
Using a digital health solution improves patient engagement in clinical trials. Patient
recruitment for clinical trials will increase and patient drop off during clinical trials will
decrease.
Working with a Contract Research Organisation the hypothesis would be tested in a
two-armed randomized control oncology trial. Recruitment of oncology patients will
be conducted.
• Control Group – Cancer patients that are recruited without using a digital
intervention, and are not given a digital intervention during the trial.
• Study Group – Cancer patients that are recruited using a digital intervention and
are given a digital intervention during the trial.
• Study length – 6 months, day 1 is the first day patient recruitment for clinical trial.
Show interest
Interested in this challenge?
Hypothesis
Methods
Primary Endpoints:
Taking cancer as a disease category of interest, HealthXL proposes the following
experiment:
• Number of study group patients vs control group patients that enrolled for clinical trial
• Number of of study group patients vs control group patients that stayed in clinical trial
for study length.

12. 12
Bloomberg meets LinkedIn for digital health
The HealthXL Platform brings together key market stakeholders in digital health, and
empowers them to collaborate and learn from each other
• Gain global coverage of market intelligence for innovative high growth companies
• Access shared strategic learnings from market thought leaders
• Close the loop for new collaborative projects, bringing together customers, solutions,
funders and precise expertise
HealthXL Members:
Request to join the HealthXL Platform today at manage.healthxl.co
Join today

13. 13
With thanks to our member Icon
for proposing this challenge
Authors
Ruth Coleman
Lead Market Analyst, HealthXL
ruth@healthxl.org
Julie Carty
Head of Member Engagement,
HealthXL
julie@healthxl.org
References
i. 2016, Tufts Centrer for the Study of Drug Development
ii. Fouad et al., 2013. Enrollemnt of patients with lung and colorectal cancers onto clinical trials.
Journal Of Oncology
Michael Garrow
Business Analyst, HealthXL
michael@healthxl.org
Carlos Rodarte
HealthXL Advisor
rodarte.carlos@gmail.com
“ The importance of patient engagement in clinical trials shouldn’t be underestimated. Where
patients have been engaged in clinical trial design in particular it has proven to substantially
improve patient recruitment, retention and overall compliance rates. Wearables continue to grow
in their importance in clinical trials capturing more data more accurately while acting as a real-
time source of information to patients”.
Tom O’ Leary, Chief Information Officer at Icon

14. 14
Flat Iron is a cloud based software that support the continuum of cancer care.
It organizes the world’s oncology information.
Vitaltrax in a cloud based software solution that gives patients guidance with
access to clinical trial information and also has eCOA and EDC features.
Double Blinded is a crowdsourced clinical trials platform. Their primary
focus is to provide users with a reliable way to determine the effective ness
of a given lifestyle decision.
Transparency life sciences is an online network that aim to design clinical trials
via crowdsourcing methods and provide open access to clinical trial data
without limitations.
Trinetx is a federated data network that connects clinical researchers in real
time to the patient populations they are attempting to study.
Science 37 is a mobile based clinical trials company that allows patients to bring
research into their homes.
FindMeCure is the “google for clinical trials” - users can search, weigh, and
understand treatments in development
Companies 1/3
Appendix 1
PatientsLikeMe is an online network of over 400,000+ patients who can share their
knowledge on treatment options, ongoing research, and support each other.

15. 15
Appendix 1
Molecular match helps cancer patients find all trials available for their
specific type of cancer.
Strata oncology's goal is to expand late stage cancer patients access to tumor
sequencing and precision medicine trials.
TrialX is building an ecosystem of solutions to build a robust online presence
for clinical trials.
ePatientfinder connects physician’s and EHR data to clinical trials
Antidote connects patients with clinical trials by organizing the world’s research
information and presenting it to patients.
Thread Research is a Turn Key Remote Patient Research and Care Software
that enables remote patient research via Apple Researchkit and Carekit.
Companies 2/3
Neoclinical is a group of registered nurses that match patients with clinical trials.
Kayentis design eCOA solutions that are designed to improve clinical trial
compliance with solutions that are intuitive, efficient and user friendly for patients.

16. 16
Appendix 1
Cure Forward provides patients with a genomic sequencing test which they
can use to find their best suited clinical trial via clinical trial exchange.
Clinithink is CLiX ENRICH for Clinical trails interrogates rich patient data from
within EMRs, PROs and and EDC systems to optimize patient recruitment
processes.
Circulation is a non-emergency medical transportation service that through its
partnership with Uber can assist in physically getting patients to trial sites.
Companies 3/3
OneVoice is a platform for encouragement, knowledge and collaboration in
rare diseases. Their platform rareClnical provides information on ongoing rare
disease clinical trials.
Mytrus has developed enroll – a mobile informed consensus and patient
enrollment platform for clinical trials.
Custodix is a soltuion that collects and shares privacy senstive data. It is the
driving force behind the InSite Platform which aims to accelate clinical research
by leveraging Real World Data.