A hypochondriac joins a clinical trial. Patient Jeri Burtchell blogged her clinical trial - TRANSFORMS, for the MS drug Gilenya, sponsored by Novartis. On the cutting edge where research and social media intersect. She is an advocate for patient-centric trial design and speaks across the country to put a face to the Partner in Research, formerly known as "subject". Visit the website she has co-founded: www.partnersinresearch.org

1. How “Subject #0008” Captured Her Clinical Trial Experience
Through Social Media and Blogging
A Hypochondriac Joins a Clinical Trial

3. The idea of joining a trial conjured up all sorts of questions …
Will I have to leave my home and go live at the study center?
Images of hamster cages and exercise wheels came to mind.

4. It turned out my study center
is vaguely reminiscent of the
hamster cage, however I didn’t end
up having to live there, thankfully.

5. This is the page I landed on when I Googled my clinical trial. … Really??!
Everything I found about clinical trials was from an academic or research point of view.
Nothing to tell me what it was like to BE in a study.

6. I’m sure someone in research could decipher it, but to me it looked like this.

7. I couldn’t FIND a patient
perspective about clinical trials
on the internet so I decided I
would blog mine from start to
Finish and help others.

8. I blogged, not realizing others with MS were following along until
they started commenting. Some even found the courage to join the
trial as well, after seeing that I could do it. A conversation began.

9. Wanting privacy, we started a Clinical Trial Yahoo Group:
Patients discussed issues like wi-fi availability and travel reimbursements, and we tried very hard not to
compare symptoms, instead we kept reminding each other to take those issues to our study nurses, since
that was all part of being in a trial - reporting.
Mainly we just wanted to know we weren’t alone.

10. Social
Bookmarking
Social Networking
There is no stopping social
interaction. All you can hope
to do is harness its awesome
power and use it for good.
Image & Video
Sharing
Search Engines

11. An Exercise in “Patient-Centric”
To know the patient, become the patient.
www.PartnersInResearch.org/m/ic/

12. Patient-centric Informed Consent
Research-centric Informed Consent
Travel
We will provide transportation to
and from study center. If you
prefer to drive yourself, we will
reimburse your gas/mileage.
Travel
You must make every attempt to
keep all study related
appointments.
You are responsible for your own
travel arrangements..
Makes life easier for
patients.
Testing
We will group tests into a single
visit, when possible, to minimize
absence from work or school.
All tests will be explained to you
prior to your study visit so you
know what to expect.
If you have any special concerns
they will be addressed before the
test (i.e. Xanax before your MRI
for claustrophobia)
Testing
Makes life easier for
study center.
Appointments are scheduled
based on the availability of testing
equipment. You may be asked to
make several trips to the study
center within a two week window
in order to undergo all testing for
a give time period.
A missed appointment may cause
you to be dropped from the study.

13. Patient-centric Informed Consent
Reimbursements
You will be reimbursed for travel
related expenses including gas,
taxi, bus, subway, train, parking
fees, etc.
You will be given meal tickets if
you are asked to stay at the study
center or wait for testing longer
than 3 hours.
You will receive a small payment
($30) per visit as compensation
for your time.
Makes life easier for
patients.
Extras
Extras
Mobile app to collect certain data
In-Home Nurse visits.
Trial Specific Forum membership.
On-site childcare at study center.
Research-centric Informed Consent
Reimbursements
There will be no reimbursements
for this study. Study center will
not be responsible for any
expenses incurred in relation to
your participation. This includes
meals, travel, parking, daycare or
missed time at work.
Makes life easier for
study center.
Children are not allowed to
accompany you to the facility.
Please make prior arrangements
for childcare.
The only benefit you may receive
will be the lesson you take away
from this exercise.

14. www.PartnersInResearch.org

15. Dynamically updating list
of MS-specific trials that are
currently open and enrolling.
Made possible with help from Jerry Matczak and Ignacio Monteros
of Lily COI and www.ClinicalCollections.com

16. Patient-to-patient engagement
in the clinical trial process.
Sharing stories and experiences.

17. Educating future trial
Patients on the responsible
Use of Social Media

19. Thank you!
for caring about patient-centric trial design