Meet Subject #0008 - a Partner in Research

A Hypochondriac Joins a Clinical Trial

How “Subject #0008” Captured Her Clinical Trial ExperienceThrough Social Media and Blogging

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.

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

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.

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

I couldn’t FIND a patientperspective about clinical trialson the internet so I decided I would blog mine from start toFinish and help others.

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

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 tocompare 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.

Search Engines

Social Networking Image & Video Sharing

Social Bookmarking

There is no stopping socialinteraction. All you can hope

to do is harness its awesome power and use it for good.

www.PartnersInResearch.org/m/ic/

An Exercise in “Patient-Centric”To know the patient, become the patient.

Patient-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.

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)

Research-centric Informed Consent

Travel

You must make every attempt to keep all study related appointments.You are responsible for your own travel arrangements..

Testing

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.

Makes life easier for study center.

Makes life easier for patients.

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.

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.

Extras

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.

Makes life easier for study center.

Makes life easier for patients.

www.PartnersInResearch.org

Dynamically updating listof MS-specific trials that are

currently open and enrolling.

Made possible with help from Jerry Matczak and Ignacio Monterosof Lily COI and www.ClinicalCollections.com

Patient-to-patient engagementin the clinical trial process. Sharing stories and experiences.

Educating future trialPatients on the responsibleUse of Social Media

Thank you!for caring about patient-centric trial design