What We Can Learn From Patients’ Stories

What is disease?  As bioethicist, Jackie Leach Scully wrote, “Most of us feel we have an intuitive grasp of the idea, reaching mentally to images or memories of colds, cancer or tuberculosis. But a look through any medical dictionary soon shows that articulating a satisfactory definition of disease is surprisingly difficult.” 1

Every day, people come to Inspire’s social communities with the goal of sharing their experience with disease. We believe that those living with disease define it in their stories. Communities of patients with cancers, autoimmune, chronic and rare diseases and their caregivers cope through stories. Not only do the journey narratives of patients communicate our values, but they also tell us about our principles, our culture and ourselves.

Preserving stories

Collecting and preserving stories is the goal of the “Experts by Experience” project. On February 2, a collaboration began between Mayo Clinic and Inspire to publish “Experts by Experience.” Patients and caregivers from around the world will write the series of articles.  The featured writers will be members of Inspire and of Mayo Clinic Connect, and their stories will be published monthly on the Mayo Clinic Social Media Network, Mayo Clinic Connect and on Inspire.com.

In the kickoff column in the series, Renata Louwers wrote of her experience as a caregiver to her first husband who had stage IV bladder cancer.2 Specifically she compared two visits to the Emergency Department at their local hospital, in so doing she illustrates differences in care.  “It takes discreet actions like kindness, helpfulness, empathy – things within the control of every person – to scale up the humanity of care. And scaling up, even slightly, can have a big positive impact…”she said.

The power of patients’ perspectives

Accounts of unmet needs pervade these collected stories of the patient journey making them unique reservoirs of information for the life science industry. As I explained in Why Storytelling Builds Brands,3 “stories grab our attention, are memorable, affect feelings and move people to action.”  The power of narratives of people who are ill is in clearly defining the experience of disease.  Patients are experts in the experience of illness, an experience that no one wants. By preserving and sharing these stories, the ultimate goal of Experts by Experience is to create a compassionate, patient-centered healthcare industry.

See our eBook, “Experts by Experience 2017”

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Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.