In the past 10 years, a fair amount of headway has been made in refining error reporting systems, especially since the Institute of Medicine report "To Err Is Human". More recently, Patient Safety Organizations have taken shape and been introduced to the healthcare industry.
One point of view missing from all of these reporting systems, however, is that of the patient and his or her family. However, a new project funded by the Agency for Healthcare Research and Quality (AHRQ) aims to utilize the patient's perspective more when analyzing adverse events.
"AHRQ values the perspective that consumers have regarding the quality of their healthcare," says Linda Greenberg, PhD, senior advisor at the AHRQ's Center for Quality Improvement and Patient Safety. "This project is geared toward listening to the patient's voice–and learning from their experience–as a means to improve the quality of care."
In September 2008, the AHRQ awarded a two-year contract to RTI International, a research institute, and Consumers Advancing Patient Safety (CAPS), a nonprofit organization, to develop recommendations for designing a consumer reporting system, and how to make one a reality. Almost at its halfway point, the project has collected initial feedback from patients and experts involved.
The case for a consumer reporting system
Sue Sheridan, MBA, MIM, founder of CAPS and leader of the World Health Organization's Patients for Patient Safety initiative, would have liked a consumer reporting system available when her family was affected twice by medical errors.
"My husband died from a medical error and my little boy suffered brain damage from a medical error," says Sheridan. "So I saw healthcare from a really different perspective, I saw the dangerous gaps that exist in our healthcare system." Sheridan was invited by the AHRQ to testify at the first summit on medical errors and patient safety 10 years ago.
"Part of my testimony was 'why was there no system for me to report these errors?' says Sheridan. She felt that her experience could have helped the healthcare system as a whole learn from the errors.
In 2006, a Kaiser Family Foundation survey revealed that one in three people said they or a family member had experienced a medical error. A more recent study published in the Annals of Internal Medicine found that among 998 patients 23% reported having at least one adverse event occurring during their hospital stay. Only 11%, however, had an error recorded in their medical records. A consumer reporting system would work to remedy this disconnect and reduce the total number of medical errors by factoring in the patient's view.
"This underreporting of patient safety events limits the ability of healthcare providers to learn from past mistakes and be proactive in preventing bad outcomes in the future," says Greenberg. "Patients are in a unique position to experience the entire continuum of care from one care setting to another, where healthcare providers may not have the same opportunity to view the whole picture of the patient’s experience of care in the same way."
It is this experience that the contract, titled Designing Consumer Reporting Systems for Patient Safety Events, hopes to capture and use in a way that will improve patient safety.
Considerations for design
The goal of the contract is to recommend how a consumer reporting system should be designed, says Greenberg. To do so, the project has engaged different groups of people. First, a technical expert panel consisting of 18 national and international experts in patient safety has met during the past year to hash out key design elements through a consensus approach. The technical expert panel plans to meet three more times over the next year to flesh out the design of a consumer reporting system.
In addition to the technical expert panel, a big part of the project involves talking directly with patients and getting feedback from them about how to design a consumer reporting system. The project members have conducted two focus groups so far. Participants in these were either a patient or a family member who had experienced an adverse event (a near miss or actual event). Greenberg says the plan is to conduct eight more focus groups.
"We're learning a lot from the patient population," says Sheridan. "In the design of the ideal patient reporting system, AHRQ has requested that we go out to this patient population and learn directly from them, and it's so often that piece is missed. When it comes to patient safety they forget the patient and so we're going directly into the trenches to patients who have thought about reporting what has happened to their family and run into barriers."
A third group of people from whom feedback is being solicited is a group of key stakeholders. Project members are interviewing national experts who are knowledgeable about patient safety from a multitude of backgrounds—including clinicians, patient advocates, representatives from healthcare organizations, and experts in quality improvement and event reporting, says Greenberg.
Ultimately, the groups and individuals involved in this project hope the recommendations developed will allow the steps for creating a consumer reporting system to be taken.
"I think that a consumer reporting system will give us a much better idea of the incidence of medical errors," says Sheridan. "We know that the current reporting systems are tragically underutilized so I think that patients can, by reporting, accelerate change, drive change, and demand change."
For more about the AHRQ's contract to decide on design elements of a consumer reporting system, see the September issue of Briefings on Patient Safety.