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Global Forum | June 2016 Advocates Get a Place at the Table Because We EARN a Place at the Table DIA Patient Engagement Community Co-Chair Marcia Horn discusses what works and what doesn’t work in patient advocacy with patient advocate Rick Bangs. Marcia: Many admire you as the unsung hero of the patient advocacy community. In addition to being a survivor of bladder cancer, coming up on the tenth anniversary of your September 2006 diagnosis, you’re also a seasoned bladder cancer advocate with tremendous substantive knowledge. What you’ve accomplished as chairman of the Patient Advocate Committee at SWOG is truly astounding. (SWOG, formerly the Southwest Oncology Group and now simply “SWOG,” is one of the country’s leading clinical trials sponsors and is part of NCTN, the NIH’s National Clinical Trials Network.) You’ve developed a culture, and an accountable system at SWOG, where the patient advocate is truly integrated into the workings of each cancer committee. I saw you in action 38 Vol 8 Issue 3 during the last SWOG meeting in San Francisco, and you have a passion to integrate the patient voice and the patient advocate voice into protocol design and throughout committee deliberations. You also have an overarching drive to make sure that integration actually happens— that it’s not lip service or “check-off-the-patient-box” window dressing, but robust interaction and verifiable involvement. SWOG has one (or sometimes two) patient advocates assigned to each disease committee. And you’ve brought SWOG “onboarding” of new patient advocates to an art and a science. SWOG is unquestionably a leader in patient engagement and patient-centricity, and could provide an excellent template for the biopharmaceutical industry to quickly be able to ramp up advocate involvement on protocol review committees. How did you accomplish integrating the advocate voice into SWOG protocol review? Rick: SWOG research advocacy is founded on this basic tenet: Advocates get a place at the table because we earn a place at the table. How and why we earn that place was not always clear to researchers and advocates just a few years ago. We’ve had to explore the “why” and show the “how” in order to improve. One of our early wins was creating a document called Ten Key Questions Investigators Can Ask Their Patient Advocate About Their Trial. This list of questions communicated the value of working with advocates to design and conduct cancer trials. It also aligned researchers and advocates on the content of our collaboration. The Questions created the playbook, if you will. Investigators generally got the premise, though the questions were more catalyst than solution. Later and unrelated to the Ten Key Questions, the SWOG Executive Committee—of which I am a member—overhauled the process for reviewing trial concepts prior to NCI submission. I suggested adding a patient-centric component to the executive team review, and leadership was supportive. The Patient Advocate Committee created a review form that was similar to a form used by the National Cancer Institute for the Scientific Steering Committee reviews.