Meeting Ignites In My Shoes Pathway Audit Tool Development

Documenting the real-time, first-person adolescent and young adult (AYA) cancer experience just got a little closer to reality.

The In My Shoes research team, led by Critical Mass Director of Community Initiatives Rebecca Block, Ph.D, met in Portland, Oregon last week to develop the first draft of the evidence-informed worksheet that Critical Mass believes will inform positive changes to the AYA cancer care pathway and improve the lives and treatment outcomes of young adults living with cancer.

During the two-day workshop, the research team aggregated months of valuable input from the In My Shoes working group, a comprehensive literature review and their own expertise to develop the audit tool’s content and structure and outline the study’s protocol.

Dr. Brandon Hayes-Lattin, OHSU Knight Cancer Institute AYA Oncology Program Medical Director and Critical Mass Chief Medical Officer, is one of five In My Shoes research team members. His experience in AYA oncology has led to an intimate understanding of the young adult cancer experience. He hopes the new program will optimize a more AYA-centered approach.

“I see so many young adults who come through our care, and are not getting their care delivered in a way that best serves them,” Hayes-Lattin said. “This project will provide the much needed data to document the experiences of these young adults, so that we can change the way they get their care.”

Like Hayes-Lattin, Kristin Stegenga, RN, Ph.D, is passionate about improving care for AYAs. Among a long list of accomplishments, she’s continually studied cancer’s impact on the lives of young adults, including ways to mitigate its negative psychosocial effects.

“The first step is understanding [the young adult cancer patient’s] experience,” she said. “This project is a unique way to fully realize that at a fundamental level.”

Cancer treatment throughout the country is as diverse as the cancers themselves. Leukemia survivor, political activist and 2014 Critical Mass conference speaker Kate Houghton knows the AYA experience firsthand. She wanted to be involved in the development of the program to provide a personal perspective and help unify the voice of other AYA survivors.

“One voice can make the world listen,” she said. “All our voices can make the world change. The technology, passion and time is right to bring all AYA voices together and change how our needs are met from the day we are diagnosed until well after we are cancer-free.”

While In My Shoes is still in its early development stages, Critical Mass hopes to begin enlisting patients in the pilot program as early as late spring. Keep up to date on the progress of the In My Shoes initiative by joining the Critical Mass digital newsletter.

Special thanks to Sigma-Tau for providing support for the meeting.

More Information About In My Shoes
In My Shoes applies a proven tactic from grassroots public health campaigns known as a “walking audit.” It is a tactic that has evolved out of a growing emphasis on people-centered campaigns, designed to engage residents in assessing their own community’s needs and co-developing solutions alongside their leaders.

By adapting this tactic to the young adult cancer journey, we will enlist patients in describing their transit through the cancer care delivery system, noting the specific touchpoints that could be introduced or adapted to better “fit” them as young people — a perspective that is currently overlooked in our cancer care delivery system.

Currently, we have a binary cancer care delivery system with two paths: a pediatric path and a path for older adults. Young adults (defined by the NCI as 15–39 years old) exist in a no man’s land with no medical “home,” and thus are arbitrarily directed down one of the two paths. While young adults traveling either path are still treated for their disease, key touchpoints and treatment decisions along that journey relative to their age and stage of life may be inadequately addressed or completely overlooked, contributing to less than optimal outcomes and feelings of disempowerment.

To learn more about the program, including how to participate, click here.

In My Shoes Research Team Members
Brandon Hayes-Lattin, MD, OHSU Knight Cancer Institute AYA Oncology Program Kristin Stegenga, RN, Ph.D, Children’s Mercy Hospital Kansas City Amy Frohnmayer, MS, MAC, Critical Mass Research Assistant

Kate Houghton, Political Activist and Leukemia Survivor

Originally published at criticalmass.org on March 16, 2015.