As Vice President of Patient Advocacy and Stakeholder Management at Otsuka America Pharmaceutical, Inc. (OAPI), Mary has the unique opportunity to work with trailblazing leaders both inside and outside the clinic walls to create innovative patient- centered solutions. It is Mary’s responsibility to understand how the world is changing across multiple disease categories, and she pulls together the thoughts, ideas, and research from a global array of key opinion leaders, patient advocates, technologists, caregivers, and more to incubate novel business solutions. Mary brings innovation to Otsuka by engaging with stakeholders from the world’s most prestigious medical centers to local advocacy chapters.
Before coming to Otsuka, Mary spent nine years with Wyeth Pharmaceuticals in Opinion Leader and Advocacy Relations, where she developed and executed our Global Opinion Leader business strategies across the Specialty products portfolio. Prior to Wyeth, she was at Bristol-Myers Squibb for 13 years, in a variety of positions. At Otsuka, Mary has spearheaded the launch of the Global Council on Alzheimer’s Disease (GCAD), a collection of preeminent experts who influence the Alzheimer’s space, including science, medicine, technology, policy, advocacy, and caregiving. Through GCAD, Mary jumpstarted technological innovation, framed a patient navigation model for Alzheimer’s, and helped improve communications between families and healthcare providers.
Mapping the lived experiences: The dyad journey of people with agitation in Alzheimer’s and their care partners
Mary Michael, Otsuka America Pharmaceutical, Inc., United States
A substantial amount of analysis has been dedicated to understanding the individual journeys of the “patient” and the “caregiver” in Alzheimer’s disease. This work has provided valuable insights, but a few priorities remain:
- how is the lived experience journey in Alzheimer’s shaped by the complexities of agitation and other behavioral aspects of the disease;
- how can insights from “social listening” analysis structure our understanding of these journeys;
- how can we understand the dyad journey of the person with Alzheimer’s and the care partner as well as the interactions therein, particularly through the lens of agitation.
This project, “Mapping the Lived Experiences” recasts the Alzheimer’s journey to better reflect these priorities. We offer a visual interpretation of the journey with the rationale and proof points that underpin it.
“Mapping the Lived Experiences” prioritizes agitation and other behavioral aspects of Alzheimer’s as pivotal, enduring challenges on the disease journey. We frame the journey into two overarching phases: “the first loss,” which accounts for the more widely recognized symptoms of the disease, such as memory loss and declining cognitive function; and “the second loss,” which is characterized by agitation and behavioral aspects of the disease. We structure the journey around “milestone moments” – moments when both the person with Alzheimer’s and the care partner recognize that the disease has taken a major progression.
The “milestones” moment framework reflects an interpretive framework developed through an ongoing “social listening” research project. This social listening research allows analysis of the online conversation as it is happening in social channels and discussion boards, and it provides a poignant counterpoint to quantitative market research insofar as it illuminates the unfiltered, unmitigated experiences as articulated by the people who are learning in real-time to manage and live with Alzheimer’s. From social listening insights and analysis, our research posits that journeys – for both the person with Alzheimer’s and the care partner – are not linear, straight-line trajectories, but jagged, fragmented paths marked by “milestone moments” that shape thinking, understanding, and behavior.
“Mapping the Lived Experiences” offers a dyad visualization and articulations, as it fuses the journeys of the person with lived experience and the care partner together in the same visual space. This approach reveals how, over time, these journeys relate, inform, and ultimately depart from one another. This dyad offers new insights into both the lived experience and care partner journeys.