Getting Involved in Research as a Patient

Research Training

If you’re interested in participating in research but want resources and training to make your experience more meaningful, you may find the PEER program helpful. Go to our PEER program sign-up to begin your online training via learning modules tailored to help you succeed.

Become a Mentor

If you’ve participated in our PEER program, you are encouraged to become a mentor for fellow patients interested in getting involved in bladder cancer research. Sharing your experience is invaluable; help answer a peer’s questions or offer your advice regarding being a patient research advocate. Sign up below to be connected with a peer.

Patient Testimonials

• “The sense of empowerment to observe that all attending–patients, MDs, drug reps, etc–were all collegially invested in the process.”

  Participant reflecting on a PEER-guided session at the annual BCAN Leadership Summit

• “I’ve been rather shy in discussing bladder cancer since my diagnosis in 2011. No longer. You’ve shown me how to stand up and advocate for all of us in the community. [I gained] a much deeper understanding of bladder cancer and current treatments, the roles and responsibilities of research advocates, and the utmost importance of clinical trials in advancing the science.”

  Participant reflecting on the PEER training program

• “This information will help me understand and evaluate the process of creating a study on a particular topic. I would like to be involved in the creation of other studies on topics important to bladder cancer patients.”

  Participant reflecting on the PEER training program

• “The sense of empowerment to observe that all attending–patients, MDs, drug reps, etc–were all collegially invested in the process.”

  Participant reflecting on a PEER-guided session at the annual BCAN Leadership Summit

• “I’ve been rather shy in discussing bladder cancer since my diagnosis in 2011. No longer. You’ve shown me how to stand up and advocate for all of us in the community. [I gained] a much deeper understanding of bladder cancer and current treatments, the roles and responsibilities of research advocates, and the utmost importance of clinical trials in advancing the science.”

  Participant reflecting on the PEER training program

For Researchers

Involving patient advocates adds a valuable perspective to a research team; luckily, through the PSN we have identified a growing roster of patients interested, eager, and trained in participating on a research team. Additionally, you may request access to the PSN for survey research purposes. The PSN has a wealth of information from a growing community of patients, caregivers, family members and friends of affected patients.

Requesting PSN Data for Research

The Patient Survey Network includes over 1300 members with a wide range of demographic and socioeconomic characteristics as well as bladder cancer stages and treatments across the United States and Canada. Investigators may use the BCAN PSN to construct a research survey of its members. The BCAN PSN contains general information about patient age, gender, disease stage, treatment, and date of diagnosis, which can be queried. Researchers utilizing this pathway must submit a short research proposal to the BCAN PSN Steering Committee by the first Friday of the month that outlines the research question, target population, and plans for dissemination of findings to the bladder cancer community. If survey questions are already known, these may be attached.

Finding Patient Advocate Research Partners

The BCAN PSN includes a list of engaged patients who are interested in participating as research partners. In addition, a smaller subset of approximately 50 BCAN PSN members have completed formal research training through our PEER program and have expressed interested in joining research teams. To request a patient advocate research partner to join your research team, the investigator must complete a BCAN PSN Request Form. This request form should include the research question, reason why your research team would like to include a patient or caregiver research partner, specific target population for your research question, and plan for compensation of the research partner’s time. If approved, a list of patient partners will be electronically provided to the investigator.

Applying for BCAN Grants

Visit the Research Grants page to find more information on the different awards and how to apply.

Thank you for your dedication to bladder cancer. With your help, we will work toward better prevention, diagnosis, and treatment – and ultimately a cure!