My experience as the chief executive officer (CEO) of several cancer-focused biotechnology companies was undoubtedly helpful in late 2015. I was diagnosed with Stage IV head and neck cancer at the young age of 47. However, even my career choice didn’t adequately prepare me for the journey ahead. I was still absolutely terrified.
Recently, I spoke at GCI Health to share my perspectives from CEO to Expert Patient as part of the agency’s People at the Center series. The firm’s effort shares a perspective from not only people living with conditions, but also researchers, healthcare providers, caregivers/ family/friends, etc. According to GCI, the goal is to help all team members cultivate a people-first mindset through real-life stories and insights, so that thinking can be infused into their client work.
Curious by nature, I felt the overwhelming need to further research and understand my disease and its treatment. Before my diagnosis, I had no idea that the human papillomavirus (HPV) can cause six different cancers in men and women. Now, even as I consider my dire fate, I cannot help but wonder why more parents aren’t embracing the cancer-preventing HPV vaccine that wasn’t available when I was a preteen.
The initial prognosis was good. I received the best care from the finest medical institutions and brightest of healthcare professionals. Sadly, my cancer returned within six months of potentially curative therapy. It was a punch to the gut. I would have done nearly anything to beat this disease upfront.
My care shifted from curative to palliative intent. In other words, prolonging survival and resolving symptoms as much as possible and for as long as possible. As the patient person living with the disease, I had new goals and objectives to be considered.
For example, quality of life became more important than quantity of life. I wanted to be able to enjoy my remaining time as opposed to feeling too tired or sick to do anything. Through constructive dialog with my oncologist, treatments were modified to reduce some of the more troublesome side effects. My views and wishes were considered, and my healthcare was more person-centered.
As someone who knew perhaps more than the average person, I had a number of questions and thoughts on my cancer treatment for healthcare professionals throughout my journey. Reactions to my background as the CEO of several oncology-focused organizations varied, but in most cases physicians made it clear they were the expert and I was simply the patient. On occasion, I still had to “fight” for my voice to be heard.
Of course, today, many cancer patients have access to information through the internet, mass media, educational activities in hospitals, communities, and patient groups they gather for conversation with their healthcare providers. Those living with cancer also progressively acquire both experience and knowledge of their condition. This connects to the growing trend of an “expert patient,” a person who has been empowered with the skills, confidence and knowledge needed to play an active role in making informed decisions about their own health care and management of their chronic condition.
But even the most educated of individuals may struggle with finding clinical trial information, understanding where to get the best care, determining the right treatments, and defending what they want. Accordingly, the expert patient movement needs to be about more than just education. It must acknowledge a fundamental truth, that only patients can be ‘experts’ in terms of assessing the impact of disease on their lives, and expressing their individual values, goals and preferences.
Organizing and harnessing the power of these individuals across diseases so that they can contribute their skills and insights to help educate others, further improve services, and be fully valued and understood by healthcare professionals will improve the delivery of quality medical care for all. This is a large, rich resource not to be wasted. I hope those reading this blog will consider how they can further implement people’s experiences into their ongoing work of improving the lives of so many who are living with chronic or acute conditions.
Michael D. Becker is president and founder of MDB Communications LLC where he currently serves as an inspirational speaker, freelance writer, and consultant to the healthcare industry, other businesses, and nonprofits. He previously served as president, chief executive officer, chief financial officer, and director for several publicly traded biotechnology companies, including Cytogen, VioQuest Pharmaceuticals, and Relmada Therapeutics. In mid-2018, he published the second edition of his popular memoir A Walk with Purpose and actively blogs about his cancer experience at My Cancer Journey.
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Patient blog: mdbcancerjourney.com
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