Designing Ideal Consumer Reporting
Systems for Patient Safety Events
Linda G. Greenberg, PhD
Agency for Healthcare Research and Quality
Center for Quality Improvement and Patient Safety
AcademyHealth Annual Research Conference
June 29, 2009
AHRQ’s Mission
Improve the quality, safety,
efficiency and effectiveness of
health care for all Americans
2
Congressional Mandate
AHRQ shall conduct and support research and build privatepublic partnerships to:
 identify the causes of preventable health care errors
and patient injury in health care delivery;
 develop, demonstrate, and evaluate strategies for
reducing error and improving patient safety; and
 disseminate effective strategies throughout the health
care industry.
3
Patient Safety: An Epidemic
 Medical errors and patient injury or harm is an epidemic of
worldwide proportion.
– Treat the problem as an epidemic and plan accordingly
– “We should declare war on medical errors” - John
Eisenberg MD, Former AHRQ Director (Sept. 11, 2000)
 AHRQ is committed to advancing patient safety and
working with providers to improve the quality of care and
actively engage consumers in their care.
 Patient safety is a national priority.
4
To Err is Human:
Building Safer Health System
 44,000 – 98,000 deaths/year
 8th leading cause of death in US
 National Costs: $17 to $29 billion
 Adverse Drug Events: $2 billion, alone
 2% hospital admissions (preventable)
 Impact: $4,700 in costs added to each
hospitalization
Source: To Err Is Human, Institute of Medicine, 1999
5
Patient Safety:
Relative Scope of the Problem
Patient Safety Related Deaths
100000
98000
90000
80000
70000
60000
50000
43458
40000
30000
20000
10000
6000
50
0
Medical
Auto
Source: To Err Is Human, IOM, 1999
6
Workplace
Air
Patient Safety: A Continuing Problem
 It’s been a decade since the IOM raised national
awareness of the prevalence and severity of medical
errors.
 More than 25 States have passed legislation or created
regulations related to hospital reporting of adverse events.
 Nearly all patient safety event reporting systems are
designed for use by health care providers, not consumers.
 Current reporting systems often do not accommodate the
desire of patients and their families to provide input on
their experiences with care.
7
Reporting Patient Safety Events:
Listening to Patients
 In 2006, one in three people (34%) said that they or a
family member experienced a preventable medical error
(Kaiser Family Foundation Survey).
 Patients report many adverse events (some serious and
preventable) that are not documented in the medical
record.
– Among 998 hospital patients, 23 percent had at least
1 adverse event, but only 11 percent had an adverse
event identified in their medical records.
Source: J.S. Weissman, E.C. Schneider, S.N. Weingart et.al. “Comparing
Patient-Reported Hospital Adverse Events with Medical Record Review: Do
Patients Know Something That Hospitals Do Not?” Annals of Internal Medicine,
Vol. 149, No. 2, 100-108, July 15, 2008.
8
Valuing Patients’ Reports of
Patient Safety Events
 Under-reporting of patient safety events limits the ability of
providers to learn from past mistakes and be proactive in
preventing bad outcomes in the future.
 Providers and patients may have different perspectives, but
patients can provide valid reports on harm.
 Patients are in a unique position to experience the entire
continuum of care, enabling them to identify gaps in care
that may contribute to adverse events (e.g., transitions).
 Internationally and in the U.S., there are very few patient
safety reporting systems that incorporate both healthcare
provider- and patient-reported data.
9
The Patient Safety and Quality
Improvement Act of 2005
 The Patient Safety and Quality Improvement Act of 2005
established Patient Safety Organizations (PSOs), which
encourage clinicians and healthcare organizations to
voluntarily report and share data on patient safety events
without fear of legal discovery.
 Yet, the Patient Safety Act did not contemplate a role for
consumer reporting.
 AHRQ recognizes that systems that include patients’ reports
of their care experience can complement information that is
collected from healthcare providers through other reporting
mechanisms.
10
Consumer Reporting Systems
for Patient Safety Events
 Two-year $618,000 ACTION contract awarded to:
– RTI International and Consumers Advancing Patient
Safety
– Period of performance: Sept. 2008 – Sept. 2010
– Purpose: To develop recommendations for ideal
consumer reporting systems for patient safety events.
– Outcome: to outline the specifications for the future
development of consumer reporting systems for patient
safety events.
11
Research Questions
12

What type of information can consumers provide regarding
patient safety events?

What are different options for consumer reporting systems?
And, how would they differ at the international, national,
regional, state, or local levels?

What type of infrastructure is needed to enable effective,
actionable consumer reporting of patient safety events?

What is the most effective operational approach?

How would consumer reporting systems be linked to quality
and/or patient safety improvement efforts?

How can reporting systems maximize the willingness and
ability of consumers to report patient safety event information?
Mixed-mode methodology
 An iterative consensus-building process, using Nadler’s
IDEALS Design Concept:
– Technical Expert Panel (Multidisciplinary – 18 members)
 Three Round Delphi Process
 Nominal Group Technique
– 10 Consumer Focus Groups
 Geographic variation and sociodemographic characteristics
 Different settings of care: hospital, outpatient/ambulatory
care, and long-term care
– 25 Stakeholder Interviews (Multidisciplinary)
13
Mixed-mode methodology (cont.)
Project Activities (cont.):
– Environmental Scan and Literature Review
– Scientific Peer-Review: Draft Recommendations
– Comprehensive Information Dissemination Strategy
– Peer-reviewed Journal Manuscript
14
Project Design Issues
 Strengths:
– Serious effort to obtain actionable consumer input
– Multidisciplinary focus on developing recommendations
– Collaboration = better outcomes, increased learning
 Challenges:
– Consensus-building among a diverse group of experts
– Limited funding for greater consumer involvement
– Diversity of design parameters – purpose, system
infrastructure, ownership, public reporting, action, etc…
– Timeline: fast deadlines for project activities (24 months)
15
Conclusion:
Patient-Centered Approach
 Consumer engagement is an AHRQ priority.
 One of our most important challenges in patient safety is
the need for better tools to identify risks and harm to
patients, and to measure trends in patient safety.
 Patients can provide valid reports of harm and provide
actionable information on health care system failures that
may lead to significant improvements in care.
 Patient-centered approaches: correlations emerging
from different data sources tell a powerful story about
consumers’ experiences with care.

16
For more information: Linda.greenberg@ahrq.hhs.gov