The John D. Stoeckle Center for Primary Care Innovation

Patient and Family Engagement

Paradigm: Advancing the Organizational Conversation

Susan Edgman-Levitan, PA

Executive Director Stoeckle Center for Primary Care Innovation

Massachusetts General Hospital

NYSPFP Patient and Family Engagement Conference June 2 and 3, 2014

The John D. Stoeckle Center for Primary Care Innovation

Choluteca Bridge,1938 2

The John D. Stoeckle Center for Primary Care Innovation

Hurricane Mitch,1995

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The John D. Stoeckle Center for Primary Care Innovation

But, the river moved…

The John D. Stoeckle Center for Primary Care Innovation

Four Levels of Engagement

The framework/declaration was originally developed for the World Innovation Summit for Health (WISH) 2013, an initiative of Qatar Foundation. See WISH Patient Engagement Report (available at www.wish-qatar.org/reports/2013-reports).

The John D. Stoeckle Center for Primary Care Innovation

What is Patient- and Family-Centered Care?

“Health care that establishes a partnership among practitioners, patients, and their families…to ensure that decisions respect

patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions

and participate in their own care.”

Crossing the Quality Chasm: A New Health System for the 21st Century, Institute of Medicine, 2001 & The Picker Institute

The John D. Stoeckle Center for Primary Care Innovation

The Value of Patient- and Family-Centered Care • Patients are the only source of information about

many aspects of quality. • The patient’s experience is linked to improved

clinical outcomes, reduced readmissions, reduced mortality, and reduced malpractice risk, and improved ability to manage chronic conditions.

• Focusing on improving the patient’s experience of care requires improving the quality of work life for clinicians and staff.

The John D. Stoeckle Center for Primary Care Innovation

The Value of Patient- and Family-Centered Care • Partnering with patients and families to redesign

and/or improve care inspires and energizes clinicians, staff, and leaders while grounding them in reality, focused on the “right” solutions.

The John D. Stoeckle Center for Primary Care Innovation

Our Challenge

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“Medicine used to be simple, ineffective and relatively safe. Now it is complex, effective and potentially dangerous.”

Sir Cyril Chantler Chairman of the King’s Fund,

Chairman of the Board of the Great Ormond Street Hospital for Children NHS Trust.

Liverpool, England

The John D. Stoeckle Center for Primary Care Innovation

Barriers to Engagement

• Patient and Family Barriers 1. Understanding the terms of engagement and safety 2. Health literacy problems 3. Limited social support for vulnerable patients 4. Fear of retribution or trivialization from health care providers 5. Other factors may inhibit patient / family contributions to error

reduction; can influence a person’s ability to remember and / or process information. (Quality of physical environment; stressors such as severity of illness, pain, hunger; personal factors e.g. motivation, emotional state, etc.)

The John D. Stoeckle Center for Primary Care Innovation

Barriers to Engagement

• Health System Barriers 1. A fragmented health care system. 2. A dysfunctional professional culture. 3. Organizational leadership deficits. 4. Workflow design flaws. 5. Lack of effective engagement tools and training.

The John D. Stoeckle Center for Primary Care Innovation

System Leaders Focus On: • Placing the patient at the center of all work.

• Creation of a system of continuous learning and continuous

improvement, that engages everyone in problem solving.

• Articulation and establishment of aspirational goals and values, set at the theoretical limit of what is possible.

• Systematic removal of all barriers and excuses as to why excellence every day is not possible.

• Justly dealing with impairment/unsafe acts in practice

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The John D. Stoeckle Center for Primary Care Innovation

Preconditions for Habitual Excellence in Health Care

Can you and your colleagues answer yes to the following questions? 1. Am I treated with dignity and respect everyday by

everyone I work with? 2. Do I have the knowledge, skills, and tools to do my job? 3. Am I recognized and thanked for my contributions? 4. Is my safety, psychological and physical, a priority?

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The John D. Stoeckle Center for Primary Care Innovation

Mass General Hospital Credo As a member of the MGH community and in service of our

mission, I believe that:

• The first priority at MGH is the well-being of our patients, and all our work, including research, teaching and improving the health of the community, should contribute to that goal.

• Our primary focus is to give the highest quality of care to each patient delivered in a culturally sensitive, compassionate and respectful manner.

• My colleagues and I are MGH’s greatest assets.

• Teamwork and clear communication are essential to providing exceptional care.

The John D. Stoeckle Center for Primary Care Innovation

Mass General Hospital Credo As a member of the MGH community and in service of our mission, I will: • Listen and respond to patients, patients’ families, my colleagues and community

members.

• Ensure that the MGH is safe, accessible, clean and welcoming to everyone.

• Share my successes and errors with my colleagues so we can all learn from one another.

• Waste no one’s time.

• Make wise use of the hospital’s human, financial and environmental resources.

• Be accountable for my actions.

• Uphold professional and ethical standards.

The John D. Stoeckle Center for Primary Care Innovation

As a member of the MGH community and in service of our mission, I will never: • Knowingly ignore MGH policies and procedures. • Criticize or take action against any member of the MGH community raising or

reporting a safety concern. • Speak or act disrespectfully toward anyone. • Engage in or tolerate abusive behaviors. • Look up or discuss private information about patients or staff for any purpose

outside of my specified job responsibilities. • Work while impaired by any substance or condition that compromises my ability

to function safely and competently. Optional, depending on use: _________________ ______________________ ____

Signature Print Name Date

Mass General Hospital Boundaries

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Listening to the Voice of Stakeholders: The Power of Stories • Storytelling is our native language. Conversation is the

natural way humans think together. • Listening to an “argument” or reviewing data makes us a

critic. • Listening to a story makes us a participant and invites

receptivity. • Stories engage people at all levels of their being—mind,

emotions, and body. • Actions are fleeting. Stories about action are not.

The John D. Stoeckle Center for Primary Care Innovation

Methods to Elicit Stakeholder Experiences

• Surveys: patient experience, staff engagement • Focus Groups • Interviews

– Patients and Families – Employees who have been patients

• Walkthroughs/Observations • Comment Cards/Open-Ended Questions • Patient/Family Advisors and Faculty

The John D. Stoeckle Center for Primary Care Innovation

Focus Group Feedback for Partners’ Strategic Planning Design Groups • Identified positives and negatives about current

practices and where to save money! – Electronic medical records – Creation of patient/clinician compacts – Patient education materials for transplant patients

• Identified clinician-patient disconnects and how we might frame messages for other patients and families – Insulin clinics – Colonoscopy results

The John D. Stoeckle Center for Primary Care Innovation

Identifying Unmet Needs “Rarely will the everyday people who are the consumers

of our products, the customers for our services, be able to tell us what to do. Their actual behaviors, however, can provide us with invaluable clues about their range of unmet needs.”

Tim Brown, IDEO Author, Change by Design

The John D. Stoeckle Center for Primary Care Innovation

Walkthroughs • What is a Walkthrough?

– One staff member plays the role of the patient and another accompanies them as the family member.

– Go through a clinic, service, or procedure exactly as a patient and family do. Do everything patients and families are asked to do or not do.

• Fill out all forms. • Drive to the department or practice, drop the patient off, find a place to park,

and check in. • If the patient undresses, you should undress. If the patient does a peak flow

meter, you should too. – As you go through the process, ask questions and take pictures to

collect information about the value of processes or systems. – Keep notes about observations AND feelings.

The John D. Stoeckle Center for Primary Care Innovation

How to Conduct a Walkthrough • At each step in the

process, ask the staff to tell you what changes would make the experience better for them and for the patient or family.

Sample questions: 1. What made you mad today? 2. What took too long? 3. What caused complaints

today? 4. What cost too much? 5. What was wasted? 6. What was too complicated? 7. What involved too many

people or too many steps? 8. What did you have to do that

was just plain silly?

The John D. Stoeckle Center for Primary Care Innovation

Guiding Principles from Patient-Centered Healthcare Systems

– Create formal patient/family advisors for all major services/practices and get patient/family input on all QI and redesign efforts.

– Include a review of patient experience of care survey data, comments, advocacy reports and other qualitative information in all senior leadership meetings.

– Implement leadership interviews of patients who have experienced a medical error and/or who have had an experience of care on a quarterly basis.

The John D. Stoeckle Center for Primary Care Innovation

Guiding Principles from Patient-Centered Healthcare Systems

– Market the use of programs such as CarePages or your own websites to all inpatients and their families.

– Invest in patient-centered technologies: portals, decision support tools, educational resources, websites to support patient/family communication.

– Incorporate patient faculty into new employee orientation.

The John D. Stoeckle Center for Primary Care Innovation

Guiding Principles from Patient-Centered Healthcare Systems • Implement clinical and non-clinical HR policies that link

hiring, orientation, training, staff education, and performance evaluations to quality and safety goals which always include patient-centered care.

• Be aggressive about managing people who do not uphold the standards, values and culture.

• Provide service excellence and empathy training programs for all clinical and non-clinical staff.

The John D. Stoeckle Center for Primary Care Innovation

– Develop thoughtful reward and recognition programs for all staff, based on patient experience of care feedback and reviews from colleagues.

– Implement employee culture surveys to identify barriers to culture change and quality of work life for staff.

– Invest in communication training for clinicians and staff.

Guiding Principles from Patient-Centered Healthcare Systems

The John D. Stoeckle Center for Primary Care Innovation

“Honest criticism is hard to take, particularly from a relative, a friend, an acquaintance, or a stranger.” Franklin P. Jones The Saturday Evening Post

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Those who say it cannot be done should not interrupt the person doing it.

-Chinese Proverb

The John D. Stoeckle Center for Primary Care Innovation

References & Resources • Barry MJ, Levitan SE. Shared Decision Making—the Pinnacle of Patient-

Centered Care. N Engl J Med 2012; 366:780-781. • Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL, editors. Through the

Patient’s Eyes. San Francisco: Jossey-Bass Publishers, Inc.; 1993. • Edgman-Levitan S, Shaller D, McInnes K, Joyce R, Coltin K, Cleary P. The

CAHPS Improvement Guide: Practical Strategies for Improving the Patient Care Experience. CMS, Baltimore, MD; 2003

• Delbanco T, Berwick D, Boufford JI, Edgman-Levitan S, Ollenschlager G,

Plamping D,Rockefeller RG. Healthcare in a Land Called PeoplePower: Nothing About Me Without Me. Health Expectations, 2001 Sep; 4 (3): 144-50.

The John D. Stoeckle Center for Primary Care Innovation

References & Resources • William Boulding, PhD; Seth W. Glickman, MD, MBA; Matthew P. Manary, MSE;

Kevin A. Schulman, MD; and Richard Staelin, PhD. Relationship Between Patient Satisfaction With Inpatient Care and Hospital Readmission Within 30 Days - Page 2 (Am J Manag Care. 2011;17(1):41-48)

• Luxford K. What does the patient know about quality? International Journal for Quality in Health Care 2012; Volume 0, Number 0: pp. 1–2

• Greaves F, Pape UJ, King D, Darzi A, Majeed A, Wachter RM, Millett C.

Associations between web-based patient ratings and objective measures of hospital quality. Arch Intern Med. 2012 Mar 12;172(5):435-6. Epub 2012 Feb 13.

• Isaac T, Zaslavsky AM, Cleary PD, Landon BE. The relationship between patients'

perception of care and measures of hospital quality and safety. Health Services Res 2010;45(4):1024-1040.

The John D. Stoeckle Center for Primary Care Innovation

References & Resources

• Sorra J, Khanna K, Dyer N, Mardon R, Famolaro T. Exploring relationships between patient safety culture and patients' assessments of hospital care. J Patient Saf. 2012 Sep;8(3):131-9.

• Lehrman WG, Elliott MN, Goldstein E, Beckett MK, Klein DJ, Giordano LA. (2010). Characteristics of Hospitals Demonstrating Superior Perfomance in Patient Experience and Clinical Process Measures of Care. Medical Care Research and Review, 67(1):38-55.

• Fremont AM, Hargraves JL, Rowe RM, Jacobson NB, Ayanian JZ. Patient-Centered Processes of Care and Longterm Outcomes of Myocardial Infarction. JGIM, 2001:16:800-808.

• Cleary PD. A Hospitalization from Hell: A Patient’s Perspective on Quality. Ann Intern Med. 2003 Jan 7;138(1):33-9.

The John D. Stoeckle Center for Primary Care Innovation

• Webster, PD, Johnson, B. Developing and Sustaining a Patient and Family Advisory Council, Institute for Family-Centered Care, 2000.

• 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 http://www.ipfcc.org/ resources/index.html

• Patient-Centered Care: What Does It Take? Dale Shaller www.pickerinstitute.org/Research/shaller.pdf

References & Resources

The John D. Stoeckle Center for Primary Care Innovation

Resources • www.stoecklecenter.org • www.ifpcc.org • www.npsf.org • www.ahrq.gov • www.hospitalcompare.hhs.gov • www.ihi.org • www.planetree.org

The John D. Stoeckle Center for Primary Care Innovation

Thank You! Susan Edgman-Levitan, PA

Executive Director sedgmanlevitan@partners.org

617-643-3931 John D. Stoeckle Center for Primary Care Innovation

Massachusetts General Hospital Boston, MA

The John D. Stoeckle Center for Primary Care Innovation

Thank You! Susan Edgman-Levitan, PA

Executive Director sedgmanlevitan@partners.org

617-643-3931 John D. Stoeckle Center for Primary Care Innovation

Massachusetts General Hospital Boston, MA