New survey provides ‘incredible data’ about patient experience

GENEVA — An innovative patient-centered survey allowed for collection of feedback on the patient experience and care delivery, according to study results presented at World Cancer Congress.

The tool increased patient engagement in the feedback process and offered insights that can be used to guide or improve patient care, according to Rebekkah Schear, MIA, associate director of patient experience with LIVESTRONG Cancer Institutes at Dell Medical School, part of The University of Texas at Austin.

“Delivering a positive patient experience does not mean you have to rework all of your workloads and everything you are currently doing in your practice,” Schear told Healio. “There is this predominant belief that improving patient experience comes with the idea that ‘This is going to be hard’ or ‘This will be really daunting.’ The truth is, when we make small shifts, we can make huge changes and improvements in relationship-based care.”

Patient experience is quickly outpacing patient satisfaction as the domain to measure patient-centered care.

“Patient satisfaction asks the question, ‘How did we — the cancer center — do?’” Schear said. “This is the wrong question. We should be asking, ‘How are you doing? What was your experience like? Did you get what you need?”

Multiple validated tools measure patient experience; however, most are singular measures rather than a comprehensive set of domains, Schear said.

In addition, many health care systems have observed lower rates of patient engagement since the onset of the COVID-19 pandemic and the shift toward telemedicine.

Consequently, more innovative engagement mechanisms are needed to ensure valuable feedback on care delivery and the patient experience, Schear said.

Schear and colleagues aimed to create and implement a novel patient experience survey and overcome barriers to participation in hopes of achieving at least a 30% response rate.

Researchers conducted a systematic literature review and identified 12 validated tools from the US, Canada, Australia and Europe that measure patient experience.

Investigators incorporated five domains into their novel tool: whole person care, communication, care coordination, empowerment and access to care.

They incorporated questions from several validated patient experience surveys and also added team-generated questions.

Researchers and members of the institution’s patient advisory boards developed two drafts of the new patient experience tool. Patient advisers then provided final input and tested the tool prior to deployment.

Investigators sent the survey to more than 400 patients’ cell phones and allowed 30 days for completion.

“We got back some really incredible data that showed we were delivering a pretty high-quality experience,” Schear said.

Nearly all (98%) of respondents completely agreed or mostly agreed that providers considered their thoughts, feelings, beliefs, values and customs, and that they had sufficient time for dialogue.

Similarly, 96% of respondents said providers listened to their problems and encouraged them to take the role they wanted during their care.

Only one-quarter of respondents indicated their was too much burden on them to coordinate care. Patients and their caregivers reported spending a median 6 to 10 hours per week managing their care, a figure that is below the national average, Schear said.

Schear offered additional advice and insights gleaned from her team’s effort.

“Satisfaction is an outdated measure. We need to move toward experience,” she said. “We need to measure what matters to patients and engage patients to help us design our [evaluations]. We should use communication tools that people can access easily, so consider text messages to communicate with patients. And take calculated risks. Be bold in your measurements.”