Evidence documenting health care-associated injury/harm and mortality rates has appeared regularly in the health care literature since the 1950s, but the Institute of Medicine (IOM) report, To Err is Human: Building a Safer Health System (IOM, 1999), raised national awareness of the prevalence and severity of medical error to a new level. Since that report, individual States and health care systems have established reporting systems to detect preventable medical harm. However, recent research indicates that progress in improving patient safety has been limited. A recent report found little evidence of improvements in patient safety in the decade since publication of the landmark IOM report (Landrigan et al., 2010).
Many current reporting systems do not accommodate the desire of patients and their families to provide input on their experiences with care. Incorporating consumers' experiences and perspectives into patient safety reporting may represent a new opportunity to address this persistent challenge to health care. The Agency for Healthcare Research and Quality (AHRQ) recognizes that the unique perspective of health care consumers could reveal important information not reported by providers. Information from consumers may complement input from other reporting mechanisms, and diversify and augment our understanding of the nature and causes of preventable harm.
In an effort to realize the latent and often untapped potential of health care consumers to provide important information about patient safety events, AHRQ awarded RTI International and Consumers Advancing Patient Safety (CAPS) a contract to identify recommendations for key design elements of consumer reporting systems for patient safety events through an iterative, consensus-building process. The research questions specified by AHRQ that guide this project are:
- What type of information can consumers provide concerning their health care experience with patient safety events that may be useful and/or actionable in a patient safety event reporting system?
- What happened?
- Was the problem reported? To whom?
- What happened when the problem was reported?
- What caused the patient safety event to happen?
- Where did the patient safety event happen?
- What impact did the patient safety event have?
- What were the consequences of the patient safety event?
- What are the scope and range of options for consumer reporting mechanisms? How would these options differ at the national, regional, State, or local level?
- What type of infrastructure is needed to enable effective, actionable consumer reporting of patient safety events?
- What is the most effective operational approach for consumers to report patient safety event information? Specifically,
- In what kind of organization (e.g., public-private partnership, public, private) should a consumer reporting system be housed?
- How should a consumer reporting system for patient safety events be financed?
- How would consumer reporting of patient safety events be linked to quality and/or patient safety improvement efforts?
- How can a reporting system maximize the willingness and ability of consumers to report on patient safety events?
The draft consensus recommendations presented in this report were developed in response to these questions, using the resources described in the Description of Methods (Chapter 3).