How patient stories are re-shaping health care

Lorraine Bayliss remembers the first time she heard patients sharing their stories. Bayliss, who was diagnosed with type 1 diabetes as a child, was looking for a way to give back after she retired. She joined the Type-1 Diabetes Think Tank Network, a group that brings patients and providers together. “I saw people coming forward, just standing up and saying, this is my story,” she says. “It seemed to empower them. And it truly made me feel that I was part of a larger community.” And of course, they weren’t just talking to each other – researchers and doctors were also listening, and learning from, those stories.

That’s becoming more and more common, as patients are invited to share their stories across health care organizations.

It’s part of a broader push towards patient-centred care. More patients are being involved in all areas of health care – and efforts are being made to ensure it’s not just “checking off a box” but including patients in a more substantial way. That might include using patients to help set research priorities or having them be partners on research projects, having patient councils, or including them on research committees. “It’s about partnering with patients and families to ensure that families are engaged in decision making, [from decisions about their own care] all the way to organizational policies, procedures, priority setting,” explains Karima Karmali, director of the Centre for Innovation & Excellence in Child and Family-Centred Care at Sick Kids Hospital.

As part of that, many patients are being asked to share their own stories directly, in person at board meetings or conferences, or in print, in annual reports or hospital advertisements.

“Patient stories offer valuable insights that go way beyond the statistics and the outcomes: they have the power to inspire, humanize, compel action, and challenge assumptions,” says Jennifer Schipper, Chief of Communications and Patient Engagement at Health Quality Ontario (HQO). “Our colleagues tell us that hearing patients and their experiences, and being able to ask thoughtful questions, really gives them insights that they wouldn’t have by just looking at published literature or data.”

But how do you choose the right stories, and how do you make sure that the process of telling and hearing them is beneficial to both provider and patient?

The benefits of patient stories

“Ultimately health care providers are great at delivering care, but many of us have not been sick or used the system, particularly in the areas we practice in, so there is something to be said about the information and knowledge that, say, an endocrinologist could gain from people who are living with diabetes,” says Seema Marwaha, a general internist at Trillium Health Partners who works on telling patient stories across a variety of platforms, including Healthy Debate’s Faces of Health Care.

Stories provide a thoughtful way to bridge that gap – and to take a more holistic view of health care, that includes the patient’s entire experience, including multiple aspects of the health care system, from intensive care to home care, and even broader, including social determinants of health or institutionalized racism. They also help providers emotionally connect with the impacts of research and the need for change.

They’re especially useful in addressing things like communication difficulties, that are directly connected to the patient’s impression of care. And they’re often used alongside statistics about patient care, offering some insight and context around the numbers.

Patient stories can be used to emphasize why quality improvement initiatives are important, and to help discuss the difficult decisions, personal circumstances, and values that patients bring to health care. David Giuliano, a patient who has spoken about his experiences, says that in a way, a medical record is a story – just an incomplete one, that doesn’t tell you much about the person or their values. A story, on the other hand, is much richer and gives you a much better sense of the whole person. “The stories we tell and are told shape us, our view of the world, our sense of well being, capacity to trust, everything,” he says. “As [novelist and broadcaster] Thomas King said, “The truth about stories is, that is all we are.”