In the last document I signed before accepting my role at the Institute for Genomics Education, Workforce, & Leadership at Sarah Lawrence College, I found a typo in my title. It read, “Director of Thoughtful Leadership” instead of “Director of Thought Leadership.” Although it wasn’t my official title, it served as a good reminder of the purpose of this work. That is to provide thoughtful educational content and to build awareness of current genomics workforce challenges that act as barriers to the equitable delivery of genomic medicine.
When someone searches the internet for “Thought Leadership”, the results are a long list of how-to books, as well as some broad definitions of the work (believe me, after getting so many questions about my job and performing searches of my own, I know). While not all of these definitions fit my work, I have found one that resonates for me. It defines a Thought Leader as “someone who specializes in knowing who their target audience is, being aware of the questions they want answered and providing those answers in a format that’s relatable, understandable, and educational.”
We cannot miss the opportunity to reimagine patient communication as we reimagine a workforce poised to deliver genomic medicine.
Perhaps I gravitate towards this definition because it is similar to how I define my previous work as a clinical genetic counselor: knowing my patients, anticipating their needs, and providing care in a manner that is meaningful to them. Although I actively counseled patients for nearly five years, I also spent time working within health plans, evaluating genetics coverage policy, managing teams of professionals within the genomics industry, and connecting with life sciences leaders and healthcare executives to share the value of genetic counselors in patient care. What I learned through each of these roles across the spectrum of healthcare was that the patient experience has to be central.
There are many examples from current research regarding how we, as a genomics workforce, are not communicating with patients in a way that honors their experiences nor integrating the patient’s experience of decision-making into their care. Failing to honor a patient’s experiences can lead to mistrust, especially in underrepresented groups. Ultimately, ineffective communication has the potential to widen the disparities we are seeing in the delivery of genetically-informed care. We cannot miss the opportunity to reimagine patient communication as we reimagine a workforce poised to deliver genomic medicine. To achieve the radical change necessary to deliver precision medicine, we must listen to patient voices and act on their messages.
This work is why I have joined The Institute at Sarah Lawrence College. Although I did not receive my genetics training at Sarah Lawrence’s Joan H. Marks Graduate Program in Human Genetics, I share its philosophy and believe that bringing a humanistic approach to genomics education is an imperative. It is absolutely essential for patients to have a voice as we reimagine our healthcare system and I want this perspective to remain front and center. No matter where you are in the genomics ecosystem, this same message rings true. Whether you work to provide direct patient care, build new hospital programs or facilities, design new healthcare technology, create research protocols and define meaningful endpoints, write genomic testing policy and coverage protocols, or develop genomics continuing education and training, the patient experience needs to be central.
It is absolutely essential for patients to have a voice as we reimagine our healthcare system and I want this perspective to remain front and center.
As Director of “Thoughtful Leadership” at the Institute, I will bring forth the emerging challenges of the genomics workforce, thoughtfully include stakeholders from across the genomics ecosystem in this conversation, and conscientiously collaborate with industry peers as we forge new pathways for genomics breakthroughs to get into the hands of patients and their care teams. This isn’t something I will do alone, but in partnership with all of you. I welcome you to share your personal experiences in providing or receiving genetics healthcare. My goal is to incorporate your voices, especially those who are currently underserved by genomics healthcare, into the praxis of our institution.
To learn more about the work of the Institute for Genomics Education, Workforce & Leadership, please join our contact list or reach out to collaborate with us. You can also follow us on LinkedIn to stay up to date on the latest events.
– Kelly Athman, MS, CGC, Director of Thought Leadership at the Institute for Genomics Education, Workforce & Leadership