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The Front Line
The Front Line: Charles D. Blanke, MD, SWOG Chair

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Patients Are Our Highest Priority

Jul 10, 2015 - It sounds so simple, doesn't it? Patients Are Our Highest Priority. This is the first guiding principle that emerged from our 2010 SWOG leadership retreat, and one embraced, again, at the convocation held in 2012. "Patients first" is also a declaration we made to the National Cancer Institute in our most recent National Clinical Trials Network Operations Center grant. This promise is not merely a paper tiger. I am proud that we're fulfilling that promise together, in operations, research, and many other ways.

SWOG is increasingly getting patients involved in conceiving, designing, and executing our cancer trials. We host a robust Patient Advocate Committee -- led with passion and rigor by bladder cancer survivor Rick Bangs -- which looks at the big picture, helping us set vision and advising on accrual and other issues. Patient Advocate Committee members also participate in research committee meetings to offer a patient's perspective on new and ongoing trials. There is formal patient advocate review of concepts going to Triage, and Mr. Bangs also sits on my Executive Advisory Committee, functioning as a very senior and valued member. Recently, SWOG Deputy Chair Dr. Anne Schott has led the effort to develop a formal process map detailing our work from trial concept to activation. The map, still in development, lays out in detail the process methodology and players -- and patient advocates will be represented there and be listened to.

It's worth noting that with this new power comes new accountability. Patient advocates are, as we speak, being evaluated by disease committee chairs in the same way those chairs are evaluated by their colleagues. To run the very best trials, we need the very best performance from all our leaders.

But SWOG still has a long way to go. That's why patient advocacy will hold a place of prominence in the plenary session speaker line-up at our fall meeting in Chicago. (Stay tuned for exciting announcements on that front). It's also why the Patient Advocate Committee came up with 10 questions that investigators can ask advocates in an effort to to improve their trials. Because that's the role of the advocate. They are here to help us achieve our mission (Policy 01!): to design, participate in, and direct clinical trials that will lead to effective prevention and treatment of cancers in adolescents, young adults, and adults, in the process improving quality of life and quality of survivorship for those with malignancies.

We want to help patients, and we need their help to do so.

APPENDIX: For those interested, here are the 10 questions investigators should consider asking their patient advocate as a new trial takes shape. You say you don't know who your patient advocate is? Ask your committee's protocol coordinator.

  • How important are the goals of this trial to the patient community -- and why?
  • What patient-reported outcomes should be added as objectives?
  • What suggestions do you have to address issues that might make patients hesitant to enroll?
  • What other therapies or competing trials might keep patients from participating in this trial?
  • What benefits will this trial bring to patients in the immediate and long term?
  • What concerns, if any, do you have with the eligibility criteria?
  • How can the informed consent package and other patient literature be improved so that the information is conveyed in simple, patient-friendly language?
  • What unanswered questions or areas of concern or confusion do we need to address with additional patient communication?
  • What barriers or issues do you see with regard to collection and banking of blood and/or tissue specimens for future research?
  • How can your advocacy group and other organizations increase awareness about this trial?


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