Patient-Centered Prioritization of Bladder Cancer Research

For which topic were research priorities identified?

bladder cancer

In which location was the research priority setting conducted?

North America - USA

Why was it conducted at all?

Patient-centered research requires the meaningful involvement of patients and caregivers throughout the research process.

What was the objective?

to create a process for sustainable engagement for research prioritization within oncology

What was the outcome?

a ranking list of 13 research questions

How long did the research prioritization take?

December 2014 - December 2016

Which methods were used to identify research priorities?

Delphi; meeting

How were the priorities for research identified exactly?

Step 1: Delphi round 1: survey asking participants: "Which research questions would be relevant to patients with bladder cancer?". Step 2: Delphi round 2: participants were asked to rank questions in order of importance. Step 3: meeting: finalized list discussed in multi-stakeholder working group, top 3 questions for each disease stage emerged from discussion, final questions for each disease stage included five questions for NMIBC, four questions for MIBC, and four questions for metastatic bladder cancer

Which stakeholders took part?

Patients, caregivers. Delphi round 1: 354 participants. Delphi round 2: 1034 participants. Meeting: multi-stakeholder working group.

How were stakeholders recruited?

The initial establishment of the Bladder Cancer Advocacy Network (BCAN) Patient Survey Network (PSN) leveraged the existing BCAN Inspire online community. An e-mail soliciting enrollment in the PSN was sent to Inspire BCAN community members, with an additional online promotion encouraging patients with bladder cancer and/ or their caregivers to join. The project team continued to build off the BCAN PSN with advertisements targeting community and academic urologists, the patient-driven survivor-to survivor program through BCAN, online and print advertisements sent to bladder cancer support groups and treatment centers, and social media campaigns through blogs, webinars, and Twitter.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.