January 30, 2018

Experts by Experience – What Patient Narratives Tell Us

By Kanaaz Pereira

The world is shaped by stories. As experts in our own lives, we all have something to share, and the pivotal role of shared experiences has been well-established in improving health outcomes. On February 2, Mayo Clinic, and health care social network Inspire will launch “Experts by Experience” – a series of articles written by patients and caregivers from around the world.

Sharing stories has valuable health benefits for readers or listeners, and narrators alike. Be it through their own experiences or those of loved ones, patients and caregivers are in a unique position – by sharing their stories they are able to create a comprehensive narrative out of often chaotic journeys, and unburden the overwhelming feeling of isolation. For readers, learning about hard-won experiences not only informs, but offers hope and a sense of connection.

A main purpose of the Experts by Experience series is to bring the patient perspective to people who can learn from these experiences – health care providers, and those in communications and administration. Our hope is that reading these stories will:

  • educate and inform about lived experiences through first-hand accounts
  • paint a picture of the “day in the life” of a particular patient/caregiver reality
  • learn and discover opportunities for quality improvement

In addition to garnering the patient perspective outside clinical care, medical professionals may discover how they can improve their communication skills and practice. Social media professionals and those in health care communications will learn how to write more effectively for their target audience of patients and consumers.

Experts by Experience will feature members of Inspire and Mayo Clinic Connect, which are online support communities for patients and caregivers that connect over 1 million people. Contributors to the series have received care from centers and organizations in various health systems around the world.

The articles will appear monthly on the Mayo Clinic Social Media Network, Mayo Clinic Connect and on

Life is a story…what does yours say?

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Tags: Community Development, experts by experience, Patient Experience, Patient Involvement, patient stories, Physician Involvement, storytelling

A wonderful initiative to help support and inspire others!

I do think the power of story is greatly underestimated, and, although by its subjective nature it doesn’t present a scientific truth, it does give insight into much more important truths.

Regarding people being experts in their own lives? It reminds me of the Temple of Deplhi’s third inscription: “agnothi seuton” – know thyself. ( Something I am far away from achieving.) I sometimes wonder if a principle cause of disease – possibly even greater than the genetic contribution – is the lack of expertise or self-reflection in one’s own life?

Of note- I think this fundamental question cannot be answered by science, but instead by such techniques as shared story – hence the power of your super project!

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