Learn more about BCAN’s initiative to promote patient involvement in research. From joining our Patient Survey Network (PSN) to participating in Patient Empowerment through Engagement in Research training (PEER) program, there are many ways to advance patient-centered research.
BCAN wants to hear YOUR voice in choosing important research questions and designing research that provides direct benefits to patients through the bladder cancer patient survey network.
What is the Patient Survey Network?
The BCAN Patient Survey Network (PSN) is a network of engaged patients and caregivers affected by bladder cancer, created in 2014. The PSN was designed to allow those most affected by bladder cancer to voice their opinions in research.
What does this mean?
Traditional research has relied on medical researchers and funding agencies to determine important research questions in bladder cancer. The PSN turns this approach on its head- instead asking bladder cancer patients and caregivers about research questions that are important to them. In prior years, members of the PSN identified a list of the most important unanswered questions in bladder cancer. This list was sent to funding agencies who valued patients’ input – and in 2017, one question was identified for priority funding which is a tremendous accomplishment.
What are future plans for the PSN?
Our future plans for the PSN include continuing to update important research questions and delivering these to funding agencies annually. We also hope that members of the PSN can learn more about the research process and join research teams across the country. Patients should be part of the research team (designing research, providing suggestions to improve patient enrollment, and helping with disseminating results) – because they have personal knowledge about the disease.
You can find out about the topics that the PSN has helped researchers prioritize here.
Based on the overwhelming responses in Year 1 and 2 from the PSN, and through grant funding from the Patient-Centered Outcomes Research Institute, the Patient Empowerment through Engagement Research (PEER) training was established for patients interested in being personally involved in research. Read more about PEER here.
How often will I receive emails?
We will be respectful and only send correspondences pertinent to ongoing bladder cancer research. Although our hope is that the PSN will provide a bridge between patients and researchers (to create meaningful research teams), we will NEVER share your name or email address without your permission.
How do I join?
To join the BCAN PSN, please complete this short survey. Your email address will be entered into our database, and we will contact you when research opportunities arise.
Where can I get more information?
Thank you for your dedication to bladder cancer. With your help, we will work toward better prevention, diagnosis, and treatment – and ultimately a cure!
Want to learn more about getting involved in research? You can read more about what it takes to be involved or watch these videos about the different kinds of engagement in research