Patients and Families Share Their Stories to Improve Care

A new project in the Cancer Center—Sharing Your Stories—is seeking an innovative way to garner richer, unbiased patient and family member input about receiving care at Stanford Health Care. The brainchild of a small patient- and family-focused team within the Cancer Center, the project gives patients and family members the opportunity to share their stories privately, on a dedicated phone line that went live on September 22.

The program is being tested in a three-month pilot in two clinics, Head and Neck Cancer and Gynecological Oncology. The goal is to collect at least 50 stories, from which ethnographic analysts will decipher key themes to guide care improvement.

"Patients and families tell us that Press Ganey doesn't give them enough opportunity to say what they want to say," says Cindy DePorte, director, Cancer Services. "We want to give patients and family members an opportunity to share their stories. In addition to the clinical aspects of their care, we want to understand the practical, social and emotional sides of their experiences with cancer."

Three weeks into the pilot, says DePorte, 13 people have signed up and three have left very powerful, heartfelt stories.

Non-scripted feedback

Most hospitals traditionally collect patient feedback through surveys, interviews and focus groups. But these methods use scripted questions, developed by people within the health care setting. As the family caregiver for a current patient at Stanford, Beverly Anderson is all too familiar with filling out these questionnaires. "Every time I read a survey, I think, you're asking the wrong questions," she says.

"We're concerned that there are gaps in traditional methodology, things that we're not hearing about, because we're so directed in what we ask," says Joan Forte Scott, RN, administrative director of Patient and Community Engagement, who oversees the Patient and Family Advisory Councils and all of the Patient and Family Partner Programs. That's why she teamed up with DePorte, Anderson and Patient and Family Advisory Council member Chris Bowers to address the issue, and to create a method for collecting qualitative patient and family feedback. Patients and family members interested in participating can call a private phone line day or night, leave a message and call back as often as they like to share more stories.

"We really wanted to keep it open-ended," says DePorte. "We know that the cancer story isn't just one story. There are stories within stories."

Ethnographers at the university will listen to the stories and conduct a theme analysis to capture recurring messages, and, in the beginning, DePorte will also listen to every message to conduct an initial analysis.

"Our goal is to get unfiltered patient and family member feedback, without influence from staff, to gain a much deeper understanding of the patient and family member's perspective," says Bowers.

Prior to the phone line going live on September 22, DePorte and Anderson conducted a number of training sessions with staff in both pilot clinics to help them understand the program so they can identify patients and family members who they believe may be receptive to telling their stories. If patients are amenable to participating, they complete a brief form, and then a member of the project team calls them to explain the program further and give them the number to call.

"Our challenge is to help patients understand why it's so important," says Bowers. As a former Cancer Center patient himself, Bowers firmly believes that when patients and family members understand that their feedback will help improve care, they will want to participate. "We are giving them an opportunity to tell their stories, in their own words, in their own way, when it's convenient for them."

Layers of Engagement

The Share your Stories program is just one of many ways Stanford Health Care is reaching out to patients and families. "We have created many different layers of engagement to collect feedback from patients and families," says DePorte. Most participate by filling out Press Ganey surveys. Some go a step further and participate in focus groups or interviews. Others, like Bowers and Anderson, share their perspectives as members of Patient and Family Advisory Councils.

"Progressive organizations like ours are embedding patients and families within the organization and using their very different perspectives to help inform us and help us make better decisions about what is needed," adds Forte Scott.