Tell Me a Story

Patient narratives serve as a means for patients, family members, and caregivers to share their healthcare experiences and help to improve healthcare quality in ways that more conventional “report cards” cannot.

The Issue

Surveys of patient care that take the form of questions and answers are too structured and focused to capture the raw stories of patient healthcare experiences and do so in a timely fashion. Other downsides of surveys are that providers cannot respond to comments and the public cannot track whether a change was made as a result of a reported patient experience. Patient narratives, alternatively, provide a way to collect patient feedback that can be acted on quickly and can drive culture change and improvements in healthcare.

Key Findings

The Care Opinion online platform to capture care narratives is in use across the United Kingdom. Patients share information (positive or negative) in their own words about their experiences. Stories are tagged in a way that allows visualization of common threads beyond a particular organization or provider. A Care Opinion model has the potential to “truly transform organization culture and care systems and advance patient-centeredness” in the United States, the authors write. It can do this in six ways:

• Encouraging feedback from varied perspectives. Patients, families, caregivers, staff, and others all can contribute to a comprehensive picture of the care process.
• Tagging stories so they can be accessed by themes. Relating stories across unit, service line, department, or provider helps pinpoint where improvements can be made to processes or infrastructure.
• Offering graphical snapshots. This kind of at-a-glance synthesis of feedback can help pinpoint system issues.
• Driving broad, system-level changes. Individual stories connect staff with patients and can inform policy decision such as changing visiting hours or staffing levels.
• Providing a robust complaint mechanism for patients seeking nonmonetary redress. Often issues can be addressed and fixed without involving a formal and costly oversight body.  
  
• Using two-way communication. The public can see the content of patient narratives and the timeliness of providers’ responses.

Conclusion

The United Kingdom’s Care Opinion model has several unique aspects and functionality that are noteworthy and our analysis of these differences points to six areas where both countries could learn from each other, evolve, and innovate. Learning from the experience and lessons derived from Care Opinion and pursuing these six game-changing ideas can help healthcare systems in the United States better leverage patient narrative to transform their organizational culture and operations so that patients are truly at the center of care.

About the Study

The Robert Wood Johnson Foundation provided funding for this report as part of an examination of promising solutions from around the world that can contribute to building a Culture of Health in the United States.