Both Sides Now: Reflections from a Pharma Industry Professional and Cancer Survivor on True Patient Centricity
In 2014, Stacy Hurt was enjoying a booming career in the pharmaceutical company and life with her husband and eight- and ten-year-old sons. Though Stacy's life was not easy – her youngest son has, in her words, "profound disabilities", and requires around the clock care – her family was thriving.
Everything changed the moment she received a stage IV colon cancer diagnosis.
Now five years into her cancer journey and in remission, Stacy took a few minutes to speak with me about her experience before and after cancer, and how that has shaped the work she's doing now to push for real changes to the industry. Her 25 years of industry experience, 14 years of experience as a caregiver and five years as a patient are proving invaluable as she works to make a difference.
Earlier this year, we published a whitepaper entitled "Partner, not Participant" that discussed how 4,000 individuals living with different medical conditions want to be engaged by researchers and the pharmaceutical industry. Stacy's work and words bring color to these findings and present real solutions that could truly bridge the gap between researchers and the individuals they serve.
Lindsey: What was life like before cancer? What changed AD (after diagnosis)?
Stacy: Before cancer, it's not like life was easy, but life was good. I had just resumed my professional career as head of training and development for a pharmaceutical company. And I loved my job. Our older son was thriving in the gifted program and we were planning our 15-year wedding anniversary trip to Bermuda.
And then everything changed in a day. An hour. A moment. Everything changed. There was not a trip to Bermuda because that was the same week I went for all of my tests. I worked as much as I could, but I had to give up my career and balance fighting for my life with caring for our special needs son and trying to parent with cancer. We were juggling 8,000 things at once and it was a whirlwind. I look back and I don't even know how we got through those days.
The biggest difference after diagnosis was figuring out my identity. Cancer stole what my identity was. I'm still figuring it out five years later.
Lindsey: In that spirit, you consult for pharma as a "patient" now. How do you balance all of your roles in that work? Do you have one hat that you find yourself wearing more than the other?
Stacy: The best thing that people in the outside world can do for a cancer patient – or any patient for that matter – is to really value everything else in their life. We want to be valued for our talents and our experience. When I interact with a health system or with a company and they say, "Thanks for sharing your story," I want to be like, "I'm happy to, but by the way, I have two masters degrees and 25 years in the industry. I'm here to come to the table like Dr. So-and-So over there, like the marketing director of that company, like the training director of that company, like the consultant over there." It's way more than my cancer story . What has evolved from all of my collective healthcare experience is I have a lot of really different perspectives on all different sides of [the industry].
Now when I work with industry, the biggest need that I'm finding is that employees – scientists, researchers – feel disconnected from their end user. You have a scientist in a lab who is watching a mouse study 24 hours a day, sleeping on the lab floor banging their head against the wall wondering, "Why am I doing this? What is this getting me?"
I get to be that person who comes in, puts a face to their work, and says, "You are doing it for me. All of those hours that you are banging your head against the wall or writing technical manuals that get rejected by regulatory 15 times, are why I'm alive."
Lindsey: You are pulling the thread of patient centricity. A lot of lip service is paid to "patient centricity" in this industry. Now that you've been on both sides, what is your perception of what we are doing well? What could we be doing better?
Stacy: In my humble opinion, there's still too much emphasis placed on sales goals and data and making money, and all of that's good – it is a business, after all – but the best sales representatives and the best employees put the patient first. And that's truly what patient centricity is. It's putting the patient first and foremost in anything that you do.
The companies that I see that are doing this well are the ones that are valuing things like emotional intelligence, social responsibility, and corporate responsibility from their staff, and are also valuing patients and what they have to say. In terms of what could be done better: there are a lot of gaps in communication across the many different players along the continuum of cancer care. We are just starting to close the gap and we have a long way to go.
Lindsey: What is your perception of how patients and caregivers are included in the drug development process and how could industry be doing that better?
Stacy: Patients need to be included as early as possible, absolutely from bench to bedside for how an idea can realistically translate to a durable treatment. However, we lose a lot of talent, whether men or women, because we aren't doing all we can to be committed to flexible work accommodations, including telecommuting and maximizing technology to connect people.
Look at me, for example. I have a ton to contribute to this conversation because of my professional experience; however, my patient post-cancer treatment side effects limit me. I suffer from LARS and chemo-induced peripheral neuropathy (CIPN), which impede me in the winter — when I go outside I am at risk of falling because of the cold and the neuropathy in my feet. And of course, first and foremost I'm a full-time caregiver for my son so I'm unable to travel as much as I'd like to conferences and/or panel discussions.
When and where we can, we should really think outside the box to be accommodating and inclusive. It's the year 2019 for gosh sakes – we need to be creative here.
Lindsey: In 30 years, when you look back at your career, what do you want your single greatest contribution to be?
Stacy: I just turned 49 on my five-year cancerversary, which was a really big day for me, and I've started to look ahead as to what my second act is going to be. I want to develop a concept that will somehow make patients' and/or caregivers' lives easier. I want to solve a problem that somebody else has not solved. I have a pretty good idea in my head. I just need to make it happen.
If that does not come to fruition, my single greatest contribution has been any patient who said that they did something for his/her health, like get a colonoscopy or start an exercise program, because of me. And so if I don't get to achieve my big breakthrough, my contribution has been in the patients' lives that I've touched and the people who said I gave them hope. If that's my legacy, I will be beyond blessed and grateful.