Advancing the Science of Collecting and Reporting Patient Narratives

Two new publications from AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS®) program summarize ongoing efforts to develop strategies for eliciting and reporting patient narratives. The summaries provide details on efforts to develop and test a standardized protocol for collecting provider and consumer patient narratives that can be added to the CAHPS Clinician & Group Survey. Various approaches to publishing patient narratives in a comparative quality report for consumers are also being explored. Read new summaries of this work:

Articles about this research have been published in the New England Journal of Medicine, Medical Care, Medical Care Research and Review, and Health Services Research. Learn more about the CAHPS team’s research on consumer reporting. Find more summaries of CAHPS projects.

The ability to report CAHPS survey results in a way that supports consumers in making informed decisions has been a key element of the CAHPS project since its inception in the mid-1990s.¹ Over the years, the CAHPS grantees have conducted numerous studies to answer key questions:

What are the best ways to report CAHPS survey results so that they are understandable and usable?
How do the users of CAHPS surveys actually report the results?
What effect does the reporting of CAHPS survey results have on consumers and their choices?

More recently, CAHPS researchers associated with the Yale and RAND grantee teams have been focused on the following projects.

Eliciting Patient Narratives

Narratives from patients about their health care experiences can provide a valuable complement to standardized survey scores, both to help clinicians understand what they can do to improve their care and to engage and inform patients about differences among providers. The CAHPS research team is developing a way to collect these narratives that is as scientifically grounded and rigorous as the CAHPS closed-ended questions that are used to gather standardized data on patient experience.

Learn more:

A Scientific Approach to Eliciting Patient Narratives ( PDF [ - 134.68 KB] )
Schlesinger M, Grob R, Shaller D, et al. Taking Patients’ Narratives about Clinicians from Anecdote to Science.N Engl J Med 2015 August; 373(7):675-679.

Reporting Patient Narratives

There is increasing interest in incorporating patient narratives into consumer reports that also contain standardized measures of health care quality—including but not limited to CAHPS survey measures. The CAHPS team is exploring ways of using narratives in reports to enhance consumers’ understanding of standardized measures of quality, engage consumers in health care decision-making, and more effectively convey patient-reported experience.

Learn more:

Reporting Patient Narratives with Standardized Measures of Quality ( PDF [ - 120.49 KB] )
Kanouse DE, Schlesinger, M, Shaller D, et al. How patient comments affect consumers’ use of physician performance measures. Med Care 2016 Jan:54(1):24-31.
Schlesinger M, Grob R, Shaller D. Using Patient-Reported Information to Improve Clinical Practice. Health Serv Res 2015 Dec;50(S2):2116-2154.
Schlesinger M, Kanouse DE, Martino SC, et al. Complexity, public reporting, and choice of doctors: a look inside the blackest box of consumer behavior. Med Care Res Rev 2014; 71: Suppl: 38S-64S.
Public Reporting of Patients’ Comments with Quality Measures: How Can We Make It Work? (Webcast; June 3, 2014)
Schlesinger M, Kanouse DE, Rybowski L, et al. Consumer response to patient experience measures in complex information environments. Med Care 2012;50:S56-S64.

The Use of Summary Scores in Consumer Reports

One of the challenges facing the developers of consumer reports on health care quality is the complexity of the information, particularly when consumers have to consider multiple pieces of information to make a decision. Summary scores, which combine the scores for multiple measures of health care quality, are regarded as a promising solution to that challenge. However, summary scores have both positive and negative features, and the impact of summary scores on consumer decision-making is not well understood. The CAHPS team is exploring these issues through two research projects:

A test of consumers’ reactions to three levels of information for clinical measures, patient experiences measures, and safety measures: summary scores provided with detailed quality scores, summary scores only, and detailed scores only.
An investigation of current uses of summary scores in consumer reports and the perspectives of both report developers and key stakeholders in the reporting process.

Learn more:

Reporting Summary Scores for CAHPS and Other Measures of Quality ( PDF [ - 119.85 KB] )
Combining Measures Into Composites or Summary Scores, AHRQ TalkingQuality Web site.
Use of “Roll-ups” to Report CAHPS Survey Results and Other Quality Measures (Podcast)

¹ Read about the critical role of reporting research in: McGee J, Kanouse DE, Sofaer S, et al. Making survey results easy to report to consumers: How reporting needs guided survey design in CAHPS. Med Care 1999;37(3 suppl):MS32-40.