Start With the Stories: The Secret to Understanding Patient Experience

Jacquie Dale, OneWorldInc, PatientEngagement, PublicEngagement

Every step of Experience-Based Co-Design (EBCD) is essential to the overall process, but perhaps the most powerful component is that of storytelling. It is important to emphasize the value that storytelling brings to EBCD in truly capturing the lived-experience of patients and their families, and how critical it is that patients are engaged in the best way possible in order to share their unique experiences.

“Hearing the patient voice is at the heart of an exciting shift in health care. When we listen deeply to people’s stories, we all benefit. The truth of an individual’s journey through the system has the power to identify unforeseen problems, create new awareness and motivate all concerned to make appropriate changes.”
(Canadian Foundation for Healthcare Improvement)
Storytelling Identifies Problems

What better way to talk about what storytelling can achieve in EBCD than to begin with a story? Let’s look at the following scenario as a kind of mini case study:

You have visited your elderly mother in hospital every night for 2 weeks where she is recovering from hip-replacement surgery. She is heavily medicated and she is visually impaired. When you arrive you find that her dinner has been repeatedly left without a word from hospital staff. She cannot see the tray, which has, once again, been placed out of her reach. Even if she could see the food, or reach it, she is unable to open many of the tightly-wrapped packages as she suffers from arthritis and tremors in her hands.

Your mother is stoic. She does not want to complain, and she doesn’t want you to complain on her behalf. After all, there are aspects of her care experience that have been positive, “I am getting better,” she says, anxious to return to the comforts of home.

Nonetheless, when you see the comment card near the elevator, you reach for it, and are further frustrated that the boxes provided don’t leave enough room for you to even begin to tell the whole story. You check off what you can, resigned to an imperfect system and that it’s, “just the way it is.”

Storytelling Raises Awareness

The main challenge in the aforementioned scenario, which is all too common in health care settings, is that the hospital might know of your general dissatisfaction with your mother’s care, but it will have no knowledge at all of the details. The whole journey too often remains shrouded in mystery, unless and until a meaningful opportunity for feedback and exchange is opened up.

This is where the story-telling component of EBCD come into play. EBCD asks open-ended questions through interviews or focus groups in venues that create a safe and non-judgmental environment where patients and staff can speak freely about their experience.

In many cases, these interviews will be one of the first occasions for health providers to become fully aware of the specific challenges experienced by patients, just as they lived them. And it’s also important for staff at various levels of the health care setting to hear from each other.

Storytelling Drives Change

Gathering stories helps create a holistic picture of the healthcare system. They help to understand both the care journey and the emotional journey that people experience when they come into contact with a health care pathway or services. Following this, health care providers can enlist the input of patients, their families and other citizens to improve the system together. One of the tenets of EBCD is that design is done “with”, not “to” or “for”.

Once a health provider is really using the story-telling component of EBCD to its fullest, meaningful change and true “co-design” can happen. In the above mentioned patient scenario, with a unidirectional comment card, there is no way to drill down to the specifics of the patient experience and make meaningful improvement. Through storytelling, however, a new awareness is brought to bear on the situation, and it is this new awareness that drives change.

The Universality of Individual Stories

While every patient story is unique, there is often a universal nature to patient encounters with the health care system. The mother in the earlier scenario is not the only visually impaired senior to undergo hip-replacement surgery.

Perhaps the situation would have been even worse for someone in a similar situation who didn’t have a family member to attend to their needs and assist them. Her story must be told in order to raise awareness of problems that demand solutions that can, in turn, help improve health outcomes for others, too.

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