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What Matters to Patients Surprised Me

What Matters to Patients Surprised Me

LoriBainbridgeBy Lori Bainbridge

 

Lori Bainbridge serves as the Vice President of Strategy & Innovation for JB Ashtin. She is part of a team that is always looking for creative ways to channel and share scientific information.

 

What Matters to Patients Surprised Me

I have worked in the scientific communications field for 30 years, and I have seen our pharmaceutical clients discuss at length the importance of being patient-focused in all their endeavors—clinical trials, drug coupon and reimbursement programs, development of exceptional patient education materials, etc. Arrogantly, I thought I could instinctively know what would make a difference in a patient’s life until my own friends started becoming cancer patients themselves. What mattered to people whom I thought I knew intimately really surprised me. Here is the tale of 1 cancer patient and the surprising perk that helped him face his battle. His story and other similar tales told by friends who have battled cancer and won have helped raise my consciousness and have broadened my perspective on the design of scientific communication programs, and continue to help me generate new ideas for patient-focused service offerings.

 

In 2006, my friend Dave was diagnosed with stage 4 colon cancer. He was 42 at the time and married with 2 young daughters. The disease was terminal. Dave was an entrepreneur with a thriving business and a former Olympic hopeful who once had aspirations of representing the US at the 1988 Winter Olympics in Calgary. After so many years of good health, a potential cancer battle was not on his radar screen. As you would expect, the diagnosis shook his world and created a new normal for the family. Amid the chaos, in steps a then start-up organization called For Pete’s Sake Cancer Respite Foundation, a charity offering free vacations to terminally ill young adult patients. They offered his family and all-expense paid vacation to Disney World. Now Dave could well afford to make this same trip 10 times over on his own, but wouldn’t have dreamt it under the circumstances. It is in retrospect that I realize the value of the trip to Dave was not monetary. Psychologically, he needed an outside force to compel him to take a vacation from his cancer and the whirlwind of doctor’s appointments and treatments so that he could pause and reflect on what mattered to him in life. He returned from that trip with a new focus and a new motto, “If it’s not fun, I’m not doing it.” His final years were devoted to creating happy memories for his family to cherish.

 

As a result of Dave’s journey, I learned to listen a little more closely to patients. At a recent conference I attended, I heard a transplant survivor and patient advocate speaking about what she needed to help manage her diagnosis. Her need was much different from Dave’s. She craved information. She wasn’t seeking the traditional kind of patient education materials, she wanted the cutting-edge breaking news—clinical trial results―and she wanted this information in a format that she could understand. I sat in the audience with my colleague Shelly Asiala-Heckner, PharmD, thinking, “Hey, we know how to do that.” JB Ashtin has a skilled scientific services team who can create a patient reprint carrier that can translate the scientific findings into layman’s terms. This type of service offering would fulfill an important need for patients that could transcend the printed word and perhaps have a deeper impact on psychological well-being, much as Dave’s trip had for him.

 

Sometimes the true gift is the one behind the object itself—it’s that someone paused and cared to help fulfill a need for a person in crisis. At JB Ashtin, we continue to listen and to seek new ways to support our clients and the patients they serve.