Tap the power of patient stories to augment clinical care

When Boston-based internist Annie Brewster was diagnosed with multiple sclerosis (MS) in 2001, she was in denial. “Coming to terms with a diagnosis takes a long time,” she says. “For me, it took five years.”

Initially, she wasn’t ready to attend a support group, but she did want to read about other patients with MS. “I didn’t want to hear media sound bites,” she says. “I wanted true stories with the full arc - stories of how people are moving forward despite the hardships that are put in front of them.”

These stories, she says, are what helped her process her diagnosis so she could move forward. It wasn’t until nearly a decade later, though, that she decided to formally pursue her passion for patient stories. In 2010, she began collecting, editing and, ultimately, sharing stories in collaboration with a Boston-based public radio station to help patients and their families cope with illness.

“Initially, I was thinking it would be great to create a library of stories so patients who might have a similar diagnosis could listen and feel less alone and more connected,” says Brewster.

Eventually, this project developed into what is now the Health Story Collaborative, an organization dedicated to harnessing the healing power of stories. It includes dozens of stories from patients with terminal cancer, addiction, depression, infertility and more - all shared with the help of a Health Story Collaborative team member who works with each storyteller to depict an authentic account of their experience.

Use patient stories to improve care

Referring patients to Health Story Collaborative or other resources (e.g., blogs, discussion forums, YouTube videos and movies) is helpful on many levels, says Brewster. Patient stories are therapeutic not only for the patient who tells the story, but also for the listener or reader who is inspired by it. They’re also helpful for physicians, who can use the stories to augment the clinical care they provide, Brewster adds. 

“Experiencing others’ stories help patients feel less isolated and more connected,” says Brewster. “We know there are benefits of social connectedness and harms of social isolation.”

Staying connected is especially relevant during COVID-19, says Kate Burke, an emergency physician at Milford Regional Medical Center in Massachusetts and a senior medical adviser at PatientsLikeMe, a health and social network where patients share information about medication side effects, treatments, daily health challenges and victories, and everyday life. The site includes more than 750,000 people living with nearly 3,000 different conditions.

“COVID-19 has brought out significant anxiety and loneliness for a lot of folks,” says Burke, adding that a lot of stigma exists around those who test positive. “People feel guilty, and they’re scared that they’re going to get their loved ones sick. We have noticed a lot of conversations in our forums where patients are supporting each other.”

PatientsLikeMe provides a forum specifically for COVID-19 that includes more than 75,000 people sharing information about symptoms and treatments. as well as activities to do while social distancing, recipes, artwork and more.

Serious illness can be equally as isolating, says Rita Charon, physician, literary scholar, and founder and executive director of the program in narrative medicine at Columbia University in New York City. Patients want to read the stories of others to remind them that they’re not the only person going through a painful experience, she adds.

Experiencing others’ stories has additional benefits, says Pamela Rutledge, a media psychologist and director of the nonprofit Media Psychology Research Center in Newport Beach, California. The center examines how people consume, produce and distribute information across all media technologies to better understand and predict behavior and impact.

“There is benefit to patients being able to connect to others, share stories and offer encouragement,” Rutledge says. “This is a social component of most behavior change. It has been shown to facilitate compliance with dieting, exercise or health management.” Some physicians may even want to consider collecting and posting patient stories (with permission) on restricted areas of their own websites that only patients can access, she adds.

To do this, though, they should ideally partner with someone who can capture the story in a respectful way that motivates others, advises Brewster, whose work is grounded in the field of narrative psychology, focused on helping individuals tell stories in psychologically productive ways.

Teaming up with a professional writer who is skilled at profiling others can also be helpful, says Charon, since the goal is to tell a story that resonates with others and inspires.

Physicians should encourage patients to experience other patients’ stories and to come prepared to appointments with questions, as well as insights into what they have learned on their own about their symptoms, says Jeffrey Millstein, M.D., an internist and associate medical director for patient experience at Penn Medicine in Philadelphia. Millstein is one of 18 administrative and clinical leaders who helped create the Penn Medicine Listening Lab, a storytelling initiative that embraces listening as a form of care. “I would much rather hear about what patients are learning,” says Millstein. “Let’s get it out on the table so we can talk about it.”

Burke agrees. “It’s OK if a patient has a lot of information and is making some determinations based on what they’re learning because patients are really smart,” she says. “I often say, ‘I may have studied this in medical school, but you live with this every day. You can give me insights.’”

Vet potential resources

When it comes to suggesting specific resources for your patients, experts provide the following advice:

• Is it a corporate or nonprofit-sponsored resource? Although information on a corporate-sponsored website, for example, may be helpful for patients, it may also be biased in favor of a particular medication or treatment. This is important for patients to understand as they review the information.

• Does the information seem accurate? For example, if it’s a blog, what makes the author uniquely qualified to share their experience? Help patients understand why this individual can be a resource.

• Is the content moderated? For example, some websites may not include any oversight of the accuracy of the information posted. It’s important for physicians to educate patients about validating that information with a trusted physician or medical professional.

• What privacy, if any, do patients give up? For example, if it’s an app that includes success stories, patients may need to provide access to location data. If it’s gated content, they may need to provide an email address. PatientsLikeMe includes a privacy policy that educates patients about how their data are collected, shared and used. Patients must understand what privacy, if any, they relinquish by accessing the information so they can weigh the pros and cons.

• What have patients found helpful? Sometimes the best resources come from patients themselves. Ask for recommendations for blogs, podcasts, discussion forums and more. Also ask patients why these resources are particularly helpful. What is it that resonates with them, and how can the resources be helpful to others?

Help patients feel heard

In addition to arming patients with external resources that can help validate their experiences, physicians can do their part to make patients feel heard. “Even if you only have 15 minutes, there’s a lot that you can do to make patients feel as though you see them and are listening to them more fully,” says Brewster, who intentionally makes eye contact and avoids looking at the EHR for too long.

“In essence, all of us are storytellers, and what we bring to the doctor’s office is much more than a list of symptoms - it’s a story,” says Millstein, who starts each visit with this open-ended question: Can you tell me the story of what brought you in today?

“A lot of times, if you just let someone tell their story, some of the things you might have had to dig for are just handed to you on a silver platter,” says Millstein, adding that this strategy can actually help physicians save time, not add additional burden.

Using active listening skills and providing patients with resources to support their emotional needs can greatly improve the patient experience, says Brewster. “When doctors deliver a diagnosis, we often think of it as the end of the story,” she says. “We come in as detectives with a problem to solve. We solve it, and then we think the story is over. But for the patient, that’s just the beginning.”