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Advancing the Practice of Patient-and Family-Centered Care:Engaging Patients and Families

Mary Minniti, CPHQ, Program & Resource Specialist

Patty Black, Patient Advisor/ IPFCC Faculty

Oregon Association of Hospitals and Health Systems March 14, 2013

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In our time together . . .

Develop a shared understanding of the core concepts of patient- and family-centered care and how they can enhance quality, safety, efficiency, and the experience of care.

Explore effective ways to engage patients and families in the care experience and beyond.

Share the experience of one patient advisor to discover practical ways to engage advisors in your own organizations.

Transforming Healthcare: A Safety Imperative

“We envisage patients as essential and respected partners in their own care and in the design and execution of all aspects of healthcare. In this new world of healthcare:

Organizations publicly and consistently affirm the centrality of patient- and family-centered care. They seek out patients, listen to them, hear their stories, are open and honest with them, and take action with them.

. . . Continued Leape, L., Berwick, D., Clancy, C., & Conway, J., et al. (2009). Transforming healthcare: A safety imperative, BMJ’s Quality and Safety in Health Care. Available at: http://qshc.bmj.com/content/18/6/424.full

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Transforming Healthcare: A Safety Imperative (cont’d)

The family is respected as part of the care team—never visitors—in every area of the hospital, including the emergency department and the intensive care unit.

Patients share fully in decision-making and are guided on how to self-manage, partner with their clinicians and develop their own care plans. They are spoken to in a way they can understand and are empowered to be in control of their care.”

"The most direct route to the Triple Aim is via patient- and family-centered care in its fullest form.”

Don BerwickJ 5 2012

Health of Populations

Patient Experience

Reducing Costs

Triple Aim — Patient- and Family-Centered Care

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Patient- and Family-Centered Core Concepts

People are treated with respect and dignity.

Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful.

Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.

Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care.

Patient- and family-centered care is working with patients and families, rather than just doing toor for them.

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Why Patient- AND Family-Centered Care?

Social isolation is a risk factor.

The majority of patients have some connection to family or natural support.

Individuals, who are most dependent on hospital care, are most dependent on families…

The very young; The very old; and Those with chronic conditions.

Misconceptions about Patient- and Family-Centered Care and Customer Service/Service Excellence

▼ Patient- and Family-Centered Care is not just “being nice.” It is not just a frill, the “soft stuff,” or amenities.

▼ Patient- and Family-Centered Care is not the same as customer service and service excellence, but there is synergy with customer service/service excellence.

▼ Patient- and family-centered care is about partnerships and patient and family engagement.

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Effective helpgiving is not simply a matter of whether the helpseeker’s needs are met, but is in the manner in which they are met.

Dunst and Trivette, Pediatric Nursing,1996Trivette, C. M., Dunst, C. J., & Hamby, D. W. (1996). Characteristics and consequences of helpgiving practices in contrasting human services programs. American Journal of Community Psychology, 1996.Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). A matter of family-centered helpgiving practices. Asheville, NC: Winterberry Press.

Health Care Reform in the United States

A Consistent Theme of Patient and Family Engagement at all Levels

The Affordable Care Act of 2010

Primary care redesign, increased access, and further integration with mental health.

Partnerships for Patients: Better Care and Lower costs — Reduction in preventable hospital acquired conditions and readmissions.

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Patient and Family Engagement

Patient and family engagement is a priority consideration essential to health reform at four levels

At the clinical encounter…patient and family engagement in direct care, care planning, and decision-making.

At the practice or organizational level, patient and family engagement in quality improvement and health care redesign.

At the community level, bringing together community resources with health care organizations, patients, and families.

At policy levels locally, regionally, and nationally.

The IOM report has 10 key recommendations; the 4th

recommendation states:

“Involve patients and families in decisions regarding health and health care, tailored to fit their preferences. Patients and families should be given the opportunity to be fully engaged participants at all levels, including individual care decisions, health system learning and improvement activities, and community-based interventions to promote health.” S-23

“In a learning health care system, patient needs and perspectives are factored into the design of health care processes, the creation and use of technologies, and the training of clinicians.” 5-5.

Best Care at Lower Cost: The Path to Continuously Learning Health Care in America

http://www.iom.edu/Reports/2012/Best-Care-at-Lower-Cost-The-Path-to-Continuously-Learning-Health-Care-in-America.aspx

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“When patients, their families, other caregivers, and the public are full, active participants in care, health, the experience of care, and economic outcomes can be substantially improved.” 7-1 & 7-2

“…involving patients in improvement initiatives ensures that patients’ values and perspectives guide system design…”

“A learning health care organization is anchored on patients needs and perspectives and promotes the inclusion of patients, families and other caregivers, as vital members of the continuously learning team.” S-11

http://www.iom.edu/Reports/2012/Best-Care-at-Lower-Cost-The-Path-to-Continuously-Learning-Health-Care-in-America.aspx

American Hospital Association—McKesson Quest for Quality Prize

. . . integrating patient-and family-centered care with quality and safety agendas.

http://www.aha.org/aha/news-center/awards/quest-for-quality/index.html

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Entire issue devoted to Patient- and Family-Centered Care

April 2010

New Era of Patient Engagement

“Rx For The ‘Blockbuster Drug’ Of Patient Engagement”

Editor-in-Chief Susan Dentzer

• Activation and Engagement• Quality Improvement • Shared decision-making• End of life issues• Framework for all kinds of engagement –

from exam room to policy advisors• Health literacy• Cost implications

Health Affairs, 32, no.2 (2013)

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Kristin L. Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine Bechtel and Jennifer SweeneyPatient And Family Engagement: A Framework For Understanding The Elements And

Developing Interventions And Policies Health Affairs, 32, no.2 (2013):223-231

Learning about the patient’s and family’s experience . . .

Focus groups and surveys are not enough!

Hospitals, health systems, primary care practices, clinics, dialysis centers, and other community-based agencies must create a variety of ways for patients and families to serve as advisors.

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A Key Lever for Leaders . . .Putting Patients and Families on the Improvement Team

In a growing number of instances where truly stunning levels of improvement have been achieved...

Leaders of these organizations often cite—putting patients and families in a position of real power and influence, using their wisdom and experience to redesign and improve care systems—as being the single most powerful transformational change in their history.

Reinertsen, J. L., Bisagnano, M., & Pugh, M. D. Seven Leadership Leverage Points for Organization-Level Improvement in Health Care, 2nd Edition, IHI Innovation Series, 2008. Available at www.ihi.org.

“Facts bring us to knowledge,

Stories bring us to wisdom.”

Rachel Remen

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My Story

New AdvisorOpportunity to: be empowered

•Assist with patient education

materials

•Assist with safety issues

•Assist with access to care

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New Advisor

Organization Chart refers specifically to the Patient Advisory Council and its reporting relationships

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© 2011 PeaceHealth 27

Embedding Patient‐ and Family‐Centered Principles

IPFCC Seminar –

Dallas, Texas

Quality Corporation–

Patient and Families

as Leaders -

Transforming Patient

and Family

Engagement in Oregon

© 2011 PeaceHealth 28

My Role as Coordinator

Interviewing and

Preparing Advisors

• Right Fit

• Orientation

• Mentoring

Preparing Staff

• Information Packet

• Expectations

• Value of Partnership

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© 2011 PeaceHealth 29

Resources for Sharing Stories

A key competency of leaders of high performing organizations is the ability to share stories.

http://pulsemagazine.org/Staff.cfm?dropdown_us=1

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Getting Started . . . . . .

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Assume patients are the experts on their own experience and that they have information you need to hear and act on.

Know that families are primary partners in a patient’s experience and health.

Change The Assumptions

© 2010 PeaceHealth

PeaceHealth Partners: Patients & Families

Participating on Quality

Improvement Teams

Educating Healthcare

Leaders

Partners in Care and on

Advisory Councils

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© 2010 PeaceHealth

PeaceHealth Partners: Patients & Families

Member of Medical

Executive Committee

Full Partner in Patient

Safety Design Work

Patient and Family Advisory Councils

▼ Formal mechanism within an organization to create authentic partnerships

▼ Establishes ongoing relationships over time with regular meeting times and terms of service

▼ Seeks diverse perspectives representing the populations served

▼ Organizational leadership sponsors the effort▼ Council provides input vehicle for a variety of

topics/issues▼ Role of Advisors: Partners in key areas within the organization

[quality, safety, program development, policy] Initiates and identifies opportunities for

improvement in patient experience of care

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Establishing Advisory Councils

▼Clarify purpose and alignment with organization’s mission

▼Identify executive sponsor and liaison role within organization to support the effort

▼Utilize existing structures to support recruitment, orientation and mentoring of advisors

▼Begin outreach through trusted networks/relationships- physician and staff referrals

▼Build small successes and share the stories

▼Connect with national and local resources: www.ipfcc.org

One Leader’s Experience

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Levels of Engagement

A Quick Tour of Best Practice Examples

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Anne Arundel Medical CenterAnnapolis, MD

A collaborative process to make this profound change in organizational culture.

SMART Discharge Worksheet

Picker InstituteAlways Event

Anne Arundel Medical Center Annapolis, MD

http://alwaysevents. pickerinstitute.org/?p=1129

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Family-Centered Rounds Cincinnati Children’s Hospital Medical Center

� Units open 24/7—families viewed as partners in care and decision-making, not visitors.

� Families given choices about participation in rounds.

� Rounds linked with discharge goals.

� Role of the nurse manager.

� Role of the residents.

� Writing of orders: decreasing errors 7%-9% to 1%.

� Change in charting.

� Enhanced teaching and faculty satisfaction.

http://www.cincinnatichildrens.org/about/fcc/rounds/default.htm

2006 Recipient of the AHA McKesson Quest for Quality Prize

2008 Recipient of Picker Award for Excellence in the Advancement of Patient-Centered Care

New Critical Care TowerVanderbilt University Medical Center

Developed with Patient and Family Advisors

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Banner Desert Medical CenterMesa, AZ

Memorial Health SystemHollywood, FL

Patient and family advisors were involved in the development and design of the Patient/Family Daily Medication Record.

Nurses tested the form and now share this information with patients and families on a daily basis.

Source: Commonwealth Fund

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Contra Costa Regional Medical Center and Health Centers, Martinez, CA

In March 2010, a value stream mapping event was held to improve behavioral health emergency care, bringing together patients who had experienced a behavioral health emergency, family members, law enforcement, ambulance drivers, contract community agencies, and Medical Center staff.

Reduction by 50% in average number of psychiatric patients who left ED prior to receiving care;

Saved 255 staff hours per month spent on obtaining patient medical clearances in the ED; and

Reduction in assaults/aggressive acts reported in the ED.

Contra Costa Regional Medical Center and Health Centers, Martinez, CA

▼ 600 patients brought by ambulance directly to the psychiatric unit and not to the hospital’s emergency department;

▼ Reduced delays in getting to the psychiatric unit from the emergency department by 1000 hours;

▼ 14% of beds in the medical emergency department are freed up;

▼ The percent of patients going back into the community with a full discharge plan has gone from 50% to 90%; and

▼ The percent of patients being discharged on multiple psychotropic drugs has been reduced.

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Rounding with Patient and Family Advisors. . .

▼ Conduct leadership and safety rounds regularly throughout the health care organization.

▼ Include a patient or family advisor who is prepared for their role on the rounding team.

Vidant Health: Changing the Concept of Families as Visitors

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East Carolina Health InstituteVidant HealthGreenville, NC

Seal of Approval for Patient and Family Information and Educational Materials

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Vidant Health, formerly University Health Systems of Eastern Carolina, Greenville, NC

� Dramatic improvement in the University HealthSystem Consortium Quality and Accountability Performance Scorecard composite for patient-centeredness: 12th in 2008, 16th in 2009, 3rd in 2010, 2nd in 2011, and tied for 1st in 2012.

� 50% reduction in hospital acquired infections in past two years.

� 73% reduction in serious safety events since 2007.

� Home care experience of care surveys improved from below the 50th percentile to the 85th percentile in less than one year.

� RN turnover decreased from 15.26% in 2008 to 5.18% in 2011.

� Results of 2011 employee opinion survey indicated PFCC as strength at the unit-level and at the organization-level.

Emory Healthcare, Atlanta, GeorgiaBedside Nurse Change of Shift Report

Nurse change of shift report is now conducted at the bedside with patients and families across all shifts in all four of Emory’s hospitals. In less than six months of implementation, positive gains have been seen in patient satisfaction scores, and nursing morale is high.

Patient and family advisors collaborate with staff in conducting the education for front-line staff for this change in practice.Resource: Anderson, C. D. & Mangino, R. R. Nurse Shift Report: Who Says You Can’t Talk in Front of the Patient? Nursing Administration Quarterly, 2006.

Resource: Kaiser Permanente's Nurse Knowledge Exchange http://xnet.kp.org/newscenter/clinicalexcellence/2007-03-01.html

Baker, S. J. (2010). Bedside shift report improves patient safety and nurse accountability, Journal of Emergency Nursing, 36, 355-358.

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Emory Healthcare, Atlanta, GA

BEDSIDE SHIFT REPORT (BSR)

IS

HERE!!!!!

WHO: EVERY RN, EVERY SHIFT WHAT: STANDARDIZED BSR WHERE: EVERY UNIT WHY: INCREASE PT SAFETY, INCREASE PT&FAMILY SATISFACTION, IMPROVE PATIENT&FAMILY CENTERED CARE **The BSR team will be providing face-to-face education, answering your questions/concerns, observing and providing feedback beginning:

Emory Healthcare, Atlanta, GA

� Emory now has 150 patient and family advisors.

� Improved Press Ganey scores for overall patient satisfaction from 41st to 78th percentile; for patient perception for how well the nurse kept the patient informed from 43rd to 80th percentile.

� Patient report of satisfaction with how well pain was controlled increased from 56th to 95th percentile.

� Use of physical restraints decreased from 8.16% to 2.5%.

� Reduced hospital acquired pressure ulcers from 6% to 2.5%.

� Reduced patient falls (from 3.24 to 2.85 falls per 1000 patient days) and injury from falls (from .71 to .333 per 1000 patient days).

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Bumps in the Road

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Distracted Leadership

Strategies: Patient stories; align with other key organizational

objectives, be persistent

Inadequate Resource Allocation

Strategies: Budget; utilize existing resources creatively

Insincere Patient Advisor Partnerships

Strategies: Involve patients and families early; embed in

organizational structure

Inadequate Orientation and Mentoring of Patient

Advisors

Strategies: Use volunteer services; meet & greet

Transform the System: Begin TODAY!

▼In the moment, ask one patient/family member what’s one thing we could do to improve your experience?

▼Bring patients and families together to share stories with healthcare professionals- act on your new insights and look for small changes- let them know what changes you have made

▼Actively recruit patients/families to participate in redesign, quality and safety efforts

▼Change the sequence of patient/family focus groups- ask before design then use input in design

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Critical Factors to Keep in Mind

Meaningful ParticipationAppropriate assessment and coaching &

matching patients to opportunitiesHuman anxiety/ fear of retribution- vulnerabilityCommunication skill development that

emphasizes listening/respecting; leadership behavior that acts on patient/family information

Underestimating support for growing new rolesEducation, developmental support, safe

opportunities to learn new skills; facilitators/coaches

Outcomes/Benefits

Patients/Families are motivators – provide hope and dampens cynicism

Reduces burden for healthcare team

Creates better tools to meet patient needs and “activate” patients as full partners

Avoids costly errors in facilities design

Provides information/knowledge to make better business decisions

Broadens perspectives – acting into new ways of thinking

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Questions and Comments

Leadership Best Practices

▼ Create the expectation for partnerships with patients and families in all settings as a quality and safety strategy . . . AND involvement in change and improvement initiatives from the beginning.

▼ Appoint a staff liaison for collaborative endeavors, an individual with strong facilitation skills and access to organizational leaders.

▼ Ensure that there is a comprehensive plan to recruit, orient, and prepare advisors and the staff working with them.

▼ Create a variety of ways for patients and families to serve as advisors.

▼ Invest in patient and family leadership development.

▼ Ensure that there is a system in place to track collaborative initiatives and measure the impact.

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References and Resources

Advancing the Practice of Patient- and Family-Centered Primary Care and Other Ambulatory Settings: How to Get Started. Available from: http://www.ipfcc.org/tools/downloads.html

Advancing the Practice of Patient- and Family-Centered Care: How to Get Started (In Hospitals). Available from: http://www.ipfcc.org/tools/downloads.html

American Hospital Association Committee on Research. (September, 2010). Patient-centered medical home: AHA synthesis report. Chicago, IL: Author. Available from http://www.hret.org/patientcentered/patient-centered.shtml

American Hospital Association, Institute for Family-Centered Care. (2004). Strategies for leadership: Patient and family-centered care. Chicago, IL: American Hospital Association. Washington, DC. Available from http://www.aha.org/aha/issues/Quality-and-Patient-Safety/strategies-patientcentered.html

References and Resources (cont’d) American Society for Healthcare Risk Management. (2010). Patient-

and family-centered care: Making a good idea work [Special issue]. Journal of Healthcare Risk Management, 29(4)

Angood, P., Dingman, J., Foley, M. E., Ford, D., Martins, B., O’Regan, P., et al. (2010). Patient and family involvement in contemporary health care. Journal of Patient Safety, 6(1), 38-42.

Blaylock, B. L., Ahmann, E., & Johnson, B. H. (2002). Creating patient and family faculty programs. Bethesda, MD: Institute for Family-Centered Care.

Crocker, L., & Johnson, B. (2006). Privileged presence: Personal stories of connections in health care. Boulder, CO: Bull Publishing Company.

Davidson, J. E., Powers, K., Hedayat, K. M., Tieszen, M., Kon, A. A., Shephard, E., et al. (2007). Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Critical Care Medicine, 35(2), 605-622.

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References and Resources (cont’d)

Edwards, J. (2010). Memorial Healthcare System: A Public System Focusing on Patient-and Family-Centered Care. Available from the Commonwealth Fund at: http://www.commonwealthfund.org/Content/Publications/Case-Studies/2010/Jul/Memorial-Healthcare-System.aspx

Epstein, R. M., Fiscella, K., Lesser, C. S., & Strange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29(8), 1489-1495.

Feinberg, L. (2012). Moving toward person- and family-centered care, AARP Public Policy Institute, 1-7.

Gruman, J., & Jeffress, D. (2009). Supporting Patient Engagement in the Patient-Centered Medical Home. Available from: http://www.pcpcc.net/filesSupporting_Engagement_PCMH.pdf

Homer, C. J., & Baron, R. J. (2010). How to scale up primary care transformation: What we know and what we need to know? Journal of General Internal Medicine, 25(6), 625-629.

References and Resources (cont’d) Institute for Patient- and Family-Centered Care: www.ipfcc.org.

Johnson B. H., Abraham, M. R. (2012). Partnering with Patients, Residents, and Families—A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care.

Johnson, B., Abraham, M., Conway, J., Simmons, L., Edgman-Levitan, S., Sodomka, P., Schlucter, J., & Ford, D. (2008). Partnering with patients and families to design a patient- and family-centered health care system: Recommendations and promising practices. Bethesda, MD: Institute for Family-Centered Care. Available from: www.ipfcc.org/tools/downloads.html

▼ Leape, L., Berwick, D., Clancy, C. Conway, J. Gluck, P., et al. (2009). Transforming healthcare: A safety imperative, Quality and Safety in Health Care, 18, 424-428.

▼ Leonhardt, K., Bonin, D., & Pagel, P. (2008, April). Guide for developing a community-based patient safety advisory council. Rockville, MD: Agency for Healthcare Research and Quality. Available from http://www.ahrq.gov/ qual/advisorycouncil/

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References and Resources (cont’d) McGreevey, M. (Ed.) (2006). Patients as Partners, How to Involve

Patients and Families in Their Own Care. Oakbrook Terrace, IL: Joint Commission Resources.

McMullan, C., Parker, M., & Sigwart, J. (2009). Developing a unit-based family advocacy board on a pediatric intensive care unit. The Permanente Journal, 13(4), 28-32.

National Working Group on Evidence-Based Health Care. (August, 2008). The role of the patient/consumer in establishing a dynamic clinical research continuum: Models of patient/consumer inclusion. Available from http://www.evidencebasedhealthcare.org/

Peebles, S., Mabe, A., Fenley, G., et al., (2009). Immersing practitioners in the recovery model: An educational program evaluation. Community Mental Health Journal, 45, 239-245.

Reinersten, J. L., Bisognano, M., & Pugh, M. D. (2008). Seven leadership leverage points for organization-level improvement in health care (2nd ed). Cambridge, MA: Institute for Healthcare Improvement. (Available at www.ihi.org)

References and Resources (cont’d)

Scholle, S.H., Torda, P., Peikes, D., Han, E. & Genevro, J. (2010) Engaging patients and families in the medical home. Rockville, MD: Agency for Healthcare Research and Policy.

Shaller, D. (2008). High Performing Patient- and Family-Centered Academic Medical Centers. Available at www.pickerinstitute.org

Sodomka, P. (August 2006). Engaging patients and families: A high leverage tool for health care leaders. Hospitals and Health Networks, 28-29. Available at: http://www.hhnmag.com/hhnmag_app/index.jsp

Strong, D. L., Kin, J. M., Kratochwill, E. W., & Typaldos, C. (2008). University of Michigan: Quality and safety in an academic medical center. The Joint Commission Journal on Quality and Patient Safety, 34(11), 671-677a.

Uhlig, P. N., Brown, J., Nason, A. K., Camelio, A., & Kendall, E. (2002). System innovation: Concord Hospital. The Joint Commission Journal on Quality Improvement, 28(12), 666-672.

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References and Resources (cont’d)

Webster, P. D., & Johnson, B. H. (2000). Developing and Sustaining a Patient and Family Advisory Council. Bethesda, MD: Institute for Family-Centered Care.

Weingart, S. N., Simchowitz, B., Eng, T. K., Morway, L., Spencer, J., Zhu, J., et al. (2008).The you CAN campaign: Teamwork training for patients and families in ambulatory oncology. The Joint Commission Journal on Quality and Patient Safety, 35(2):63-71.

Weingart, S. N., Cleary, A., Seger, A. Eng, T. K., Saadeh, M., Gross, A., et al. (2007). Medication reconciliation in ambulatory oncology. Joint Commission on Accreditation of Healthcare Organizations, 33(12):750-757.

Weingart, S. N., Price, J., Duncombe, D., Connor, M., Sommer, K., Conley, K. A., et al. (2007). Patient and family involvement: Patient-report safety and quality of care in outpatient oncology. Joint Commission Journal on Quality and Patient Safety, 33(2):83-94.