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  • 16

  • $ 1,150

    pledged of $ 1,100 goal
  • 3568

    days ago
  • Funded!

    This project was successfully funded.

  • This project was successfully funded on 2014-09-08

About our project

Note: all donations to this project are tax deductible thanks to the Cancer101 Foundation.

The Problem

You can’t build patient-centered medicine without patients in the room! Patients – the very people that medicine is dedicated to – need to be a part of the audience at every medical conference!

We aim to make this happen.

You can’t build patient-centered medicine without patients in the room!

Patients for Clinical Research wants to send Citizen Scientists (patients) to medical conferences, covering their registration fees and travel costs. That way, medical professionals will be able to work directly with, and hear from, patients on the issues important to both sides of the healthcare transaction.

Savvy patients do most of their advocacy work “for the love of the game” – in other words, they get no compensation. The funds raised with this campaign will help us fund patients’ efforts to share their knowledge and insight with the professional medical community.

Our goal is to open up new collaboration channels for patients, medical professionals, and researchers that will accelerate research development, and let patients find partners for studying their own conditions. We got your patient-centered medicine right here!

The solution: Send patients to medical conferences

“Patient-centered” and “patient engagement” are big buzz phrases in healthcare these days. It seems like the industry sees patients as exotic creatures (unicorns?), with millions of dollars being spent on figuring out how to create patient engagement, or how to build a patient-centered system.

Here’s an idea: ASK PATIENTS! Patients for Clinical Research will make that happen, by putting patients in the room at medical conferences. That way, when a question related to patient engagement or participation in research gets raised … you can ask the patients in the room if it’s a good idea, or a clunker! Save millions on management consulting fees by asking the patients who attend your conference. Simple, easy, EFFECTIVE.

How this helps Everyone!

Patients are often experts on their own conditions – many of them even think about starting their own clinical study, or teaming up with researchers who are working on investigating their disease or condition.

By attending medical conferences, patients can connect directly with clinicians and researchers to help accelerate progress toward discovery of new and better treatments for everything from rare diseases to diabetes to cancer to Parkinson’s Disease — all the conditions that impact quality, and length, of life.

For the researchers and clinicians involved in scientific study into human health, what better way to drive patient engagement in the research process than to talk to a savvy patient at a medical conference? One who has a health condition that you’re actively studying, and who can collaborate with you on research?

Our Citizen Scientist Brigade will help build a connection clearinghouse for patients, doctors, researchers, and the life sciences industry to work together to accelerate discovery.

The “last mile” in creating a true partnership between medicine and the people it serves is fostering shared decision making not just at the point of care, but also at the point of science and at the point of policy decision. That’s what we’re building with this project.

How will it work? It’s really simple. A person-commonly-called-patient who wants to attend a medical conference as an equal player does this:

  1. Submits an email to PFCR with the information on the conference they’d like to attend
  2. Our review committee will meet monthly to review submissions
  3. Successful submissions will be notified as soon as a decision is made
  4. We’ll keep this going until people-commonly-called-patients are included at every medical conference across the globe

How we will use the funding?

We’ll be able to register around 40 Citizen Scientists for medical conferences with this crowd-funded war-chest (if fully funded), which will also allow us to spread awareness for PFCR, and open up additional funding avenues to further our mission.

Cost Breakdown

  • Average registration fee: $1,000
  • Average round trip airfare: $600
  • Economy hotel (2 nights): $200
  • Meals, taxis, etc.: $200
  • Total Average cost to send a patient to a medical conference: $2,000 [including registration and travel.]

Please share this project with anyone, or any group, you know that’s interested in driving healthcare system transformation. We believe that our approach will cut through the obstacles preventing medicine/healthcare from becoming a true team sport.

About Us

Casey Quinlan

Chief Message Officer, e-patient, journalist, and health policy wonk

Tracy Zervakis

Rare disease patient & advocate, e-patient, community development, and managed care expert

Find us Online




For $ 10 or more

0 Supporter(s)

The PFCR team will send you a talking e-card, thanking you from the bottom of our e-patient hearts for supporting our efforts to put patients fully at the center of medicine and medical research. Every contribution helps, so we’ll be all about gratitude!

For $ 25 or more

3 Supporter(s)

You’ll get a talking e-card AND a badge you can sport on your blog, your website, your mobile app, or all of the above, showing the world you’re all about putting patients at the center of medicine and research. You’ll be officially in the Citizen Scientist ranks!

For $ 100 or more

4 Supporter(s)

This level of support gets you what’s listed above, plus our Citizen Scientist t-shirt you can wear anywhere – like to medical conferences – to show the world you’re part of the team working to transform healthcare and medical science!

For $ 500 or more

0 Supporter(s)

You’ll get everything above, including the stylin’ t-shirt, PLUS Patients for Clinical Research will pay for a 1-year Individual Membership in the Society for Participatory Medicine! If you’re already an SPM member, your next Individual Membership renewal is on us.

For $ 1000 or more

0 Supporter(s)

You’ll get everything listed in the $500 level above, PLUS a DVD or BluRay of “Dallas Buyer’s Club,” which we think is the e-patient movie of the decade. Plus, it’s got Matthew McConaughey’s Oscar-winning performance!

For $ 5000 or more

0 Supporter(s)

You’ll get everything listed in the $1,000 level above, PLUS a Nexus 10 Android Tablet.

For $ 10000 or more

0 Supporter(s) Limited (2 left of 2 )

You’ll get everything listed in the $5,000 level above, PLUS consulting with the PFCR team to: plan a patients-included healthcare conference, develop patient-created content strategy for your organization, or create a community-building plan for your health-related project.

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