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.”
There’s a benefit to telling stories to the patient, as well. Patients and family members appreciate having input into the health care system they rely on, and simply having someone listen attentively to your story can be therapeutic. “It’s sort of like you’ve been on this great trip – or even a horrible trip – and every now and then you re-read your journal, or you show your friends pictures,” says Giuliano. “There’s kind of a gift in revisiting it.”
But for some, telling their stories might be harmful. “We recognize that there is a burden on the family member who is telling their story,” says Karmali. “Over the long term, it can burn out a family member, especially if they’re telling a story that’s emotionally draining, like talking about a child who has passed away. When they’re re-telling that story, they’re also re-living that experience.”
In response, Sick Kids has developed a program called Family as Faculty, which teaches them how to tell a story in a succinct way, how to tailor it to your audience, and how to manage emotions around that story. And “some of that curriculum is geared towards self-care, so ensuring that family members understand that when you tell your story repeatedly that it can be traumatic, and that self-care is an important part of that process,” says Karmali.
Giving patients control can also help lessen the potential for trauma. Be clear with them about what’s going to happen, and that, if they are getting stressed or concerned by telling their story, that they have the chance to stop or regroup at any time.
But it’s important not to lose sight of the fact that many people do want to participate. “There are some emotional issues and potential psychological trauma that occurs from re-experiencing [events],” says Ross Baker, professor and program lead for Quality Improvement and Patient Safety at the University of Toronto’s Institute of Health Policy, Management and Evaluation. “On the other hand, you could argue that bigger damage may come from people who feel like they went through a bad experience, and nobody cares.”
HQO has released a checklist of best practices around reaching out to patients that covers these issues. It advises being clear with patients about what you’re going to ask them. That could be in a letter that includes your focus, why you think their story is helpful, and a list of potential questions. Be clear about what the end product will be – will you be recording audio? Will it be filmed? Is this for a quote in a larger story, or will their story be written out in full? Is it likely that mainstream media might read their story, or quote from it? If it’s a board meeting or something similar, will staff have permission to repeat their story elsewhere?
That background work is key to making sure both patients and providers benefit from these stories. “We quickly learned that you have to prepare people before they come together,” says Schipper. “You need to tell them what the role is, what providers want to ask, what do you have the right to ask for, how will you learn, down the road, what the information was used for. We have the same conversations with the staff involved as well, before they talk to the patient.”
Pre-interviewing people is also beneficial, says Marwaha. “It lets you anticipate what they’re going to talk about, and be sure that they’re able to participate without doing any harm to themselves.” She also suggests that interviewing vulnerable people alongside family could be helpful.
That said, it’s also important to give patients the room to tell their own story. “Early on, people would call me and say what we’d really like you to talk about is this and this,” says Giuliano. “And there’s a part of me that thinks, well then you should get someone who wants to talk about that.” He was often asked to speak to issues around patient care – like long waits in the emergency department – when he was more interested in the framing of illness and the spiritual side of his story.
And like any patient engagement initiative, it’s important to ensure that diverse voices are at the table. There’s a risk of choosing only “professional patients” who share their stories over and over again, or hearing mostly from people who are upper-middle class, because they’re more comfortable speaking in public, or more able to take time out of their day to attend meetings.
HQO, for example, has a broad patient network they draw on that lets them think about what kind of patient would be suitable before reaching out. “We really dig deep to find the right match,” says Schipper. For smaller organizations, just making sure you’re tracking the kind of patients who are speaking is helpful. “There is no one universal patient voice, so you want to make sure you have a process wrapped around having ethnic, age, socioeconomic and gender diversity,” says Marwaha. “While difficult, that’s worth the effort.”
In the end, of course, the results are likely more important than the method. Patients are telling these stories for a reason – so respecting that difficulty by using those stories to create change is important. “The big issue is how these stories are used, what people do with them, and do they actually effect change,” says Baker.