Patient stories frame healthcare

I remember the first time I heard patients sharing their stories. In a move to innovate healthcare marketing centered on clinical outcomes and patient experience, I invited patients to a Patient Focus Group to talk about their hospital experience.

People came forward, just standing up and saying, ‘This is my story.’ It seemed to empower them. And it truly made me feel that I, too, was part of a larger community. Those who spoke weren’t just talking to each other. There were doctors and representatives from the hospital’s care team 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 for patient-centered 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. It’s about partnering with patients and families to ensure that families are engaged in decision-making, from those about their own care all the way to organizational policies, procedures, even priority setting.

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. Hearing patients and their experiences, and being able to ask thoughtful questions, really gives hospital leadership 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 the clinic or hospital and the patient?

Among the medical staff, which includes doctors, nurses, technologists and allied health practitioners, the assumption is that they are great at delivering care. But many of them have not been sick or used the system, particularly in the areas they 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.

Patient 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 outpatient care. 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.

A patient who spoke 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.

With over 30 years of experience in patient care, healthcare marketing, business development and operations, Marilen Tronqued-Lagniton is a Certified Lead Auditor for ISO 9001:2015. She earned a MBA for Healthcare Administrators at the Anderson Graduate School of Management at UCLA; Patient Safety Officer Course, Institute for Healthcare Improvement (IHI, Cambridge MA); Advanced Leadership Course, Kellogg School of Management, Northwestern University (Evanston, IL). Email mtlagniton@gmail.com.