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The Role of Consumers, Families, and the Community in Patient Safety

Slide presentation from the AHRQ 2008 conference showcasing Agency research and projects.

Slide Presentation from the AHRQ 2008 Annual Conference

On September 8, 2008, Katherine Crosson, made this presentation at the 2008 Annual Conference. Select to access the PowerPoint® presentation (47 MB).

Slide 1

The Role of Consumers, Families, and the Community in Patient Safety:

Learning from Experience
2008 AHRQ Annual Meeting
Rockville, Maryland
September 8, 2008, 3:00-4:30pm

Slide 2

The Journey

The colored photograph shows airplanes on the tarmac in front of an air traffic control tower.

Slide 3

Session Objectives

  • Describe how your organization currently includes consumers, patients/families in the planning, delivery, and evaluation of patient safety-oriented interventions.
  • Identify the range of roles and responsibilities that consumers, patients/families play in efforts to improve patient safety in the health care environment.

Slide 4

Session Objectives

  • Describe how you will plan to introduce the concept to your organization's leadership.
  • Identify resources for planning and implementing patient safety programs for consumers, patients/families.

Slide 5

Presentation Outline

  • Introduction
    Katherine Crosson, MPH, AHRQ.
  • Patient/Family Perspective
    Jim Beveridge, Member, Patient/Family Advisory Council
    Aurora Health Care, Wisconsin.
  • Range of Roles for Consumers, Patients/Families
    Cezanne Garcia, MPH
    Institute for Family Centered Care.
  • Partners in Safety: The Aurora Health Care Journey
    Kathryn Leonhardt, MD, MPH
    Aurora Health Care, Wisconsin.

Slide 6


The colored photograph shows a female pilot going over notes in a cockpit.

Slide 7

Magnitude of the Problem

  • Medical errors result in annual:
    • Deaths of 44,000-98,000 hospitalized patients (US).
    • Injuries to approximately 1 million individuals (US).
  • Surgical errors cost nearly $1.5 Billion annually.
  • World-wide recognition of the need to promote patient safety.
    • Countries representing 78% of the world's population have pledged to work together to reduce medical errors (World Alliance for Patient Safety).

Slide 8

Support for Patient/Family Engagement

Who supports a prominent role for the consumer, patient/family in patient safety?

  • Consumer/Patient Organizations.
  • Government.
  • Professional Groups/Research Organizations.

Slide 9

Consumer/Patient Organizations

  • Consumer's Advancing Patient Safety (CAPS).
  • National Family Caregiver's Association.
  • PULSE (Patient Safety Network Counsel).
  • International Alliance of Patients' Organizations.
  • Institute for Family Centered Care.

Slide 10


Department of Health and Human Services

  • Agency for Healthcare Research and Quality.
  • Centers for Medicare and Medicaid Services.
  • Centers for Disease Control.
  • National Institutes for Health.

Institute of Medicine

Slide 11

Academic Institutions

  • Patient Safety Curriculums:
    • Medical and Nursing Schools.
    • Schools of Public Health.
    • Allied Health Professionals.
  • Continuing Education.
  • Board Certification.

Slide 12

Professional Organizations

  • National Patient Safety Foundation.
  • The Joint Commission.
  • American Hospital Association.
  • Institute for Healthcare Improvement.
  • Institute for Family-Centered Care.
  • World Health Organization/Alliance for Patient Safety.

Slide 13

Patient/Family Perspective

The colored photograph shows a fighter plane.
Jim Beveridge
Member, Patient/Family Advisory Council
Aurora Health Care, Wisconsin.

Slide 14

The colored photograph shows a man sitting with a woman in a wheelchair in front of a fountain.

Slide 15

Range of Roles for Patients and Families

The colored photograph shows a glider.
Cezanne Garcia, MPH
Senior Program and Resource Specialist
Institute for Family Centered Care

Slide 16

Patient- and family-centered care is working with, rather than doing to or for.

Slide 17

The Public Reporting of Quality and Satisfaction

Screen shots of Web pages from the Cystic Fibrosis and Dartmouth-Hitchcock Medical Center's Web sites.

  • Fostering the partnerships among patients, families, clinicians, and others to encourage constructive dialogue and further improvement when reporting quality data publicly.
  • Reductions in mortality associated with intensive public reporting of hospital outcomes.

Slide 18

Keeping Pulse: Learning About the Patient and Family Experience...

  • Focus groups and surveys are not enough!
  • Hospitals and health systems create a variety of ways for patients and families to serve as advisors and leaders.

Slide 19

Why Involve Patients and Families as Advisors in Safety Initiatives?

  • Bring important perspectives about the experience of care.
  • Insights on how systems really work.
  • Inspire and energize staff.
  • Keep staff honest and grounded in reality.
  • Provide timely feedback and ideas.
  • Lessen the burden on staff to fix the problems...staff don't have to have all the answers.
  • Bring connections with the community.
  • Offer an opportunity to "give back."

Slide 20

Domains of Care to Improve Strategies and Tools for Safer Practices

  • Clinician—Patient and Family Care Interaction
    • Patient and Family.
    • Clinician.
  • Clinical Microsystem
    • Team interaction.
    • Access to care.
    • Clinical information systems.
    • Patient feedback.
  • Healthcare Macrosystem
    • Coordination of care across care settings.
    • Public information on practices.
  • Note: Thomas Bodenheimer's Improving Primary Care Strategies and Tools for a Better Practice (2007).

Slide 21

Preparation: Key Steps to Involving Patients and Families on Committees and Councils

  • Selecting Patient and Family Partners:
    • Two or more.
    • Representative of the Ethnic Diversity of Your Patient Population.
    • Key Qualities:
      • Able to Share Ideas Constructively.
      • Speaks Up.
  • Operationalizing Transparency with Legal Protections:
    • Health Insurance Portability and Accountability Act (HIPAA) training for volunteers.
    • Sign Confidentiality Agreements.

Slide 22

Once You've Started: Preparing Patient, Family and Staff Partners

  • Orientation to Safety Initiatives:
    • Orientation/Training.
    • Mentors.
  • Encourage participatory styles:
    • Offer facilitation training to middle managers and supervisors in PFCC initiatives.
    • Jargon and key concepts resources.
  • Reinforce value of patient/family input and concrete suggestions of how this information will influence practice and policy.

Slide 23

Gauge Your Strengths for Partnering with Patients and Families in Getting Your Patient Safety Program Started

  • Conduct an environmental scan:
    • Priority initiatives.
    • Culture assessment.
  • Develop a high level outline for a program.
  • Secure approval to move forward.
  • Draft a formal plan with goals, objectives, time lines, and responsibilities.
  • Commitment to resources for implementation and evaluation.

Slide 24

Key Readiness Domains to Engage in Patient-and-Family-Centered Safety

  • Data transparency.
  • Flexibility around aims and specific changes of improvement project.
  • Underlying fears and concerns.
  • Perceived value and purpose of patient and family involvement.
  • Senior leadership support for patient and family involvement.
  • Experience with patient and family involvement.
  • Collaboration and teamwork.

Slide 25

5-Year Quality Plan—Operations

Strategy: Safety and quality work is patient- and family-centered.

  • Work with legal department to establish framework for patient and family advisors serving as team members.
  • Educate leaders, front line staff, and families about patient- and family-centered care.
  • Establish that patient and family experiences are drivers for quality improvement.
  • Board provides leadership for quality and safety.
  • Physicians are engaged in patient safety and quality as partners.

Slide 26

5-Year Quality Plan—Prioritizing Key Initiatives

  • Process of leadership rounding.
  • Patients and families serve on quality teams.
  • Family involvement in Rapid Response Team implemented across University Health System.
  • Create a patient- and family-centered "model" unit at each hospital.
  • Hold an annual physician safety/quality summit.

Slide 27

5-Year Quality Plan—Culture Change

  • Patients tell stories at Board meetings.
  • Patients and families serve on root cause analysis teams.
  • Patients and families share stories at the Medical Executive level.
  • Leverage technology to customize and enhance communication with patients and families.
  • Expand patient- and family-centered units.

Slide 28

Readiness: Patient and Family Partnerships in Day-to-Day Care

An image of a Johns Hopkins' document entitled, "Our Partnership Pledge," and a screen shot of their Web site's homepage with the sub screen, "Patient Safety Video," opened.

Slide 29

Adoption: Build Strategies to Support Patient and Family Active Roles in Care

Images of documents from Banner Health and MCGHealth literature, as well as an ad with "Questions are the Answer: Get More Involved with Your Health Care."

Slide 30

Best Practices Examples of Engaging Patients and Families as Partners

  • Defining safety policy.
  • Developing and supporting evidence-based safety initiatives.
  • Patient safety-related training of staff and providers.
  • Designing and testing interventions.
  • Promoting and disseminating best practices.
  • Developing safety dashboards.

Slide 31

Defining Safety Policy

The image shows a SUNY [State University of New York] Upstate University Hospital Patient and Family Centered Care Policy/Procedure Standards Worksheet.

  • University of Washington Medical Center—Advisor membership on safety committees
    • Patient Safety Committee.
    • Falls Prevention Committee.
    • Neonatal Intensive Care Unit (NICU) Quality Leadership Team.
  • SUNY Upstate Medical University PFCC Policy Development Worksheet—Patients and families participate in policy/procedure development.

Slide 32

Developing and Supporting Evidence-based Safety Initiatives

  • Improve Care by Public Posting of Quality Data.
  • Translate new Patient Safety Goals.
  • Participate in National and Regional Collaboratives.
  • Partner with Patients and Families in Patient Liaison Safety Rounds.
  • Engage in Priority Safety Initiatives: Hand Hygiene.

Slide 33

Rapid Response Team (RRT): Transforming Clinician-Only Activation to Family Activation (Translate new Patient Safety Goals)

  • Condition H:
    • Parents can alert a similar team who will come and assess the situation..
  • Family-Activated RRT:
    • Over 50 Hospitals
      • N.C. Children's Hospital in Chapel Hill.
      • Cincinnati Children's.
      • Shands Jackson Medical Center.
      • Yale-New Haven Hospital.

Slide 34

Involving Patient and Family Advisors in Learning-Based Collaboratives (Developing evidence-based programs/resources)

  • Vermont Oxford Network:
    • Monitoring to Excellence: Quality Indicators.
    • Safety Audits: Infection Control.
    • Central Line Bundle.
  • Build Safety Dashboard.
  • Benefits:
    • Increased credibility.
    • Transparency.
    • Momentum at stages of inertia.
    • Advisors are best messengers.
    • Power of stories.

Slide 35

Training Staff and Providers

  • Patients and Families as Co-Leaders:
    • Facilitator.
    • Content Expert.
    • Faculty.
  • Keys to Success:
    • High level of involvement.
    • Related work/educational experience valuable.
    • Engage experienced, effective advisor.
    • Advisable that level of involvement may necessitate hiring as staff/consultants.

Slide 36

Patient Safety Rounds: Designing and testing interventions.

Traditional Staff-Led Patient Safety Rounds.

  • Interdisciplinary Team.
  • Ask questions that probe about safety.
  • Effectively identifies:
    • Adverse events.
    • Near-miss occurrences.
    • Design ideas for systemic interventions to effect change.

Patient and Family Safety Liaisons Rounds.

  • Focus of Patient/Family Liaison: patient feedback on safety concerns.
  • Patient and Family Advisors involved in designing program.

Slide 37

Developing Interventions: Educational Tools and Learning Aids

Growth in Patient and Family Resources that Identifies Roles for Patients/Families to Avert Errors.

  • Partner with patients and families as co-authors/reviewers.
  • Include safety standards/descriptions of what health care providers are doing to help ensure patient safety.
  • Standardized safety messages for patient and family education materials.
  • Importance of health literacy.
  • Note: Advising Patients About Patient Safety: Current Initiatives Risk Shifting Responsibility, Entwistle, Mello, Brennan, Journal on Quality and Patient Safety (Sept 2005).

Slide 38

Transforming Culture

  • Why before how. Philosophy is important, identify core values.
  • Remain focused and start small and plan long term.
  • Measure what matters. Don't get consumed with minutiae. Identify key benchmarks for success.
  • Leadership actions/behaviors are key to develop culture, reinforce norms and allocate resources.
  • Embrace patient safety culture shift: there is no doing without mistakes. Learn from it—intentionally move from shame and blame to openness and learning.
  • Engage stories to make lessons more personal and powerful.

Slide 39

  • Quality is more than technical quality.
  • The patient's and family's experience can be a driver for quality improvement.

Slide 40

Change OF a System, Not Change IN a System

  • Migrating patient and family involvement in improvement and transforming the care experience from an exception to an expectation.
  • Paradigm shift: patient and families in an entirely new position within our operational and care structures.

Slide 41

"To wait for all the evidence is to finally recognize it through a competitor's product."
—David Whyte

Slide 42

Partners in Safety: The Aurora Health Care Journey

The colored photograph shows a plane landing at sunset.
Kathryn Leonhardt, MD, MPH
Patient Safety Officer
Aurora Health Care©

Slide 43

The image is of nested circles:

  • Patient (innermost circle).
  • Provider-License.
  • Hospital-JCAHO [Joint Commission on Accreditation of Healthcare Organizations].
  • Integrated Health System-Purchasers.
  • Community.
  • Nation.

Slide 44

Partners in Safety: Research

  • Theory: Engaging consumers at the community level will improve safety
    • Patient-centered care.
    • Community-based participatory research (CBPR).
  • Goals/objectives:
    • Establish a community-based patient:provider advisory council.
    • Identify and implement interventions to improve medication safety through out the community.
  • Partners
    • Consumers Advancing Patient Safety.
    • Midwest Airlines.
    • AHRQ grant support, 2005-2007.

Slide 45

Partners in Safety

  • Walworth County Patient Safety Council.
  • 11 Patients/Caregivers and 12 Healthcare Providers.
    • Patients, doctors, nurses, retail pharmacist, parish nurse, Medicare benefits specialist, social worker.
  • 5 Aurora Clinics and 4 Aurora retail pharmacies.

Slide 46

Identifying the Problem: Formative Research

Q: How do you create an accurate medication list for patients 55 years and older in the outpatient setting?

  • (2) Focus groups: 22 patient participants.
  • Patient Interviews (n=21).
  • Provider Interviews (n=21).
  • Literature review on accurate medication lists in the outpatient setting.

Slide 47

Identifying the Problem: Patient Perspective

The bar graph measures the responses to the question:
"Does your physician ask you to bring in your medicines to your appointment for review?"

  • 21%-Yes
  • 74%-No
  • 5%-Don't Know

Slide 48

Identifying the Problem: Provider Perspective

The bar graph measures the responses to the question:
"Are your patients asked to bring in their current medications or list at each visit?"

  • 61.1%-Yes
  • 38.9%-No

Slide 49

Developing Interventions: Engaging the Community

  • Create the tools
    • Evaluations provided by 300 community members.
  • Enlist the consumers in the community
    • Active role of Advisory Council members.
    • Use existing community programs and organizations.
  • Educate and disseminate
        Medication Lists: 16,000
         Medication Bags: 7,300
      Community Education programs: 80+
      Patient and Community Participants: 2,300

Slide 50

Developing Interventions: Provider Interventions

  • Clinic Flow Analysis:
    • Best practices identified.
      • Reminder call/letter to patient; dictation process.
    • Defined staff roles and responsibilities.
  • Forms revised:
    • Standardization.
  • Education and training:
    • Outside Speakers.
    • Physician engagement through targeted data feedback.

Slide 51

Measuring the Results: Accurate Medication List

The bar graph measures:

  • AMG Overall: 68 Clinics with N charts reviewed (N=2154/N=2053)
    • (P ≤.001)
      • 2005:63%
      • 2007:56%
  • Walworth Co. AMG (Grant Project Sites): 5 Clinics with N charts reviewed (N=596/N=594)
    • ((P ≤.001)
      • 2005:55%
      • 2007: 72%

Slide 52

Measuring the Results: Patient use of Medication Lists

The bar graph measures:

  • AMG Overall:
    • 2005: 49%
    • 2007: 49%
  • Walworth Co. AMG (Grant Project Sites): (P <.001)
    • 2005: 51%
    • 2007: 61%
  • Note: 2007: 31% used Partners in Safety list

Slide 53

Measuring the Results: Provider perspective

The bar graph measures the results for:
"The medication list/medication bag helped facilitate communication between you and your patients."

  • Agree/Strongly Agree:
    • Medication list: 96%
    • Medication bag: 60%
  • Disagree/Strongly Disagree:
    • Medication list: 0%
    • Medication bag: 12%
  • Note: Survey response rate 57% (52/92)

Slide 54

Partners in Safety: Dissemination and Replication

Integrating 'partners in safety' into organizational goals:

  1. Patient safety.
  2. Regulatory requirements.
  3. Patient loyalty.
  4. Staff retention.
  5. Financial goals and incentives.
  6. Health promotion and education.
  7. Community engagement.

Slide 55

Partners in Safety Dissemination and Replication

  • Leadership support is the necessary (but not sufficient) first step:
    • Patient safety is part of the organization's mission.
    • Strategic plan built around 'patient at the center'.
    • Board committee meetings begin with patient safety story.

Slide 56

Partners in Safety Dissemination and Replication

  • Patient-Centered Care:
    • Planetree philosophy.
  • Patient safety:
    • Organizational structure and function.
  • Regulatory Requirements:
    • Medication Reconciliation (TJC).
      • Patient survey questions regarding medication safety.
    • NPSG #13: Patient involvement in own care for safety (TJC).
      • Patient/family educated/engaged in hand hygiene, fall prevention, RRT activation.

Slide 57

Partners in Safety Dissemination and Replication

The bar graph measures the results for:
"The Meaning of 'Quality': Percentage of Respondents Selecting Proxy."

  • Physician Reputation: 63%
  • Patient Safety Record: 48%
  • Hospital Reputation: 39%
  • Cutting-Edge Technology: 37%
  • Center of Excellence: 26%
  • Clinical Outcomes Data: 24%
  • Nursing Reputation: 22%
  • Hospital Rank: 20%
  • Participation in Research: 9%
  • Academic Affiliation: 8%
  • Other: 4%
  • Note: The Advisory Board Co., 2007-"Drivers of Consumer Choice."

Slide 58

Partners in Safety Dissemination and Replication

Behaviors that foster patient loyalty:

  • Safety: Made patient feel safe from medical errors.
  • Didn't act bothered when asked for something.
  • Were decisive and confident.
  • Were proud to be working at the hospital.
  • Did not say negative things about other staff.
  • Were cohesive as a team.
  • Explained things well:
    • Lead to Professionalism/Clinical Excellence.
      • Lead to Loyalty.
  • Were not condescending.
  • Responded to patient's needs quickly.
  • Were decisive and confident.
  • It was easy to do business with the hospital.
  • Listened carefully to me.
  • Treated me with kindness.
  • Asked about my emotional well being.
  • Helped me to bathroom when needed.
  • Showed compassion by using touch.
  • Managed my pain.
    • Lead to Patient Centered Experience.
      • Lead to Loyalty.

Outcome of loyal patients:

  • Higher rating of quality of care.
  • Trust in doctors, nurses and staff.
  • Say good things about hospital.
  • Would recommend hospital.
  • Make extra effort to use hospital.
  • Switch PCP to use hospital.
  • Pay more per month for insurance to use.
  • Greater number of referrals to hospital.
  • More users of hospital in household.

Slide 59

The line graph shows the results for the Aurora Health Care InPatient Satisfaction and Employee Pulse Survey Oct. 2007.

Slide 60

Partners in Safety Dissemination and Replication

The document image shows the 2008 Patient Safety Goals Care Management Impact Score which measures and scores hospitals for "Medication Safety" and "Patient-Centered Care."

Slide 61

Partners in Safety Dissemination and Replication Health promotion.

  • Health promotion:
    • Medical Home model in clinics.
    • Patient-centered care: patient empowerment.
  • Community Engagement:
    • Community programs through out Wisconsin.

Slide 62

Partners in Safety Lessons Learned

  • Redefine—and redesign—the health care provider role:
    • Patient-centered care is a collaborative relationship.
    • Workflow and delivery systems will need to be modified.
  • Apply scientific rigor to your efforts:
    • Evaluate, quantify, systems analysis, and measure.
  • Engage your community:
    • Patient safety is a public health concern.
  • Align with your strategic goals.
  • Apply lessons from other fields: behavioral economics; marketing.

Slide 63

The colored photograph shows a man sitting with a woman in a wheelchair on a deck of a home.

Slide 64

Resource Primer

An image of a document entitled, "Engaging Patients and Families in Patient Safety: A Primer," 2008 AHRQ Annual Meeting-September 9, 2008.

Slide 65

The colored photograph shows a plane getting ready to land at sunset.

Slide 66

Questions & Answers


Current as of February 2009
Internet Citation: The Role of Consumers, Families, and the Community in Patient Safety . February 2009. Agency for Healthcare Research and Quality, Rockville, MD.


The information on this page is archived and provided for reference purposes only.


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