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:
- Submits an email to PFCR with the information on the conference they’d like to attend
- Our review committee will meet monthly to review submissions
- Successful submissions will be notified as soon as a decision is made
- 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
Co-Founder
Chief Message Officer, e-patient, journalist, and health policy wonk
LinkedIn
@Patientsfcr
Tracy Zervakis
Co-Founder
Rare disease patient & advocate, e-patient, community development, and managed care expert
LinkedIn
@ChiariTracy
Find us Online
Facebook
Blog
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Have a question?
If the info above does not help, you can ask the project creator directly.
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