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    Jim Conway

    Adjunct Faculty

    Harvard School of Public Health

    [email protected]

    The Power and Privilege of

    Patient and Family Centered Care

    PQCNC

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    Where does PQCNC Want Me to Go?

    Comment on the difference between "patientexperience" and "patient engagement

    Discuss the value of including patients/family

    members as vital members of health carequality improvement teams

    Describe "what it takes" to make patients/familymembers fully integrated members of quality

    improvement teams

    Highlight the importance of Leadership in patientand family engagement efforts

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    How Do You Want Me to Get There?

    PQCNC Ten Commandments1. Thou Shalt Not Simply Trot Out thy Usual Shtick.

    2. Thou Shalt Dream a Great Dream, or Show Forth a Wondrous New Thing,Or Share Something Thou Hast Never Shared Before.

    3. Thou Shalt Reveal thy Curiosity and thy Passion.

    4. Thou Shalt Tell a Story.

    5. Thou Shalt Freely Comment on the Utterances of Other Speakers for theSake of Blessed Connection and Exquisite Controversy.

    6. Thou Shalt Not Flaunt Thine Ego. Be Thou Vulnerable. Speak of thyFailure as well as thy Success.

    7. Thou Shalt Not Sell from the Stage: Neither thy Company, thy Goods, thyWritings, nor thy Desperate need for Funding; Lest Thou be Cast Aside

    into Outer Darkness.8. Thou Shalt Remember all the while: Laughter is Good.9. Thou Shalt Not Read thy Speech.10. Thou Shalt Not Steal the Time of Them that Follow Thee.

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    Outline

    Prologue: Definitions and Profound Learning

    Dana-Farber Cancer Institute Journey Burden, Responsibility, Power

    Patient and Family Centered Care Setting Expectations

    Positioning for Success

    Action

    Challenges Outcomes

    Moving Forward

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    For your service to your patients,families, staff, and communities.

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    Prologue

    Definitions: Patient & Family Centered Care

    Profound Learning: Childrens Hospital, Boston

    1/13/20146

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    Patient Centered Care:

    Picker Dimensions Respect for patient values, preferences

    Coordination and integration

    Information, communication, education

    Physical comfort

    Emotional support

    Involvement of family and friends

    Transition and continuity

    Access to care

    Gerteis M, et al. Through the Patients Eyes. San Francisco: Jossey-Bass: 1993.

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    Four Key Concepts of PFCC

    Dignity and respect:Providers listen and honor

    patient and family perspectives and choices.

    Information sharing :Providers share complete and

    unbiased information in ways that are affirming anduseful.

    Participation:In care and decision-making

    Collaboration:In policy and program development,implementation and evaluation, as well as the

    delivery of care

    8

    American Hospital Association and the Institute for Family-Centered Care. (2004). Strategies

    for leadershipPatient and family-centered care toolkit. Washington, DC.

    1/13/2014

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    A set of beliefs and behaviors by patients,family members, and health professionals

    and a set of organizational policies,

    procedures and interventions that ensure

    both the inclusion of patients and families as

    central members of the health care team and

    active partnerships with providers and

    provider organizations.

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    Patient Engagement Defined

    A Leadership Resource for Patient and Family Engagement Strategies. Health

    Research & Educational Trust, Chicago: July 2013. Accessed at www.hpoe.org

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    Defining Patient Experience

    http://www.theberylinstitute.org/?page=PEBENCHMARKING

    http://www.theberylinstitute.org/?page=PEBENCHMARKINGhttp://www.theberylinstitute.org/?page=PEBENCHMARKING
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    Patient Experience Defined

    The Patient Experience refers to the quality and value

    of all of the interactionsdirect and indirect, clinical

    and non-clinicalspanning the entire duration of thepatient/provider relationship.

    Deloitte

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    I dont care who youare. I am going to stay

    with my child.

    Pediatric Mother, 1976

    1/13/201412

    Popper B, Black A, Ericson E, Peck D. A Case Study of the Impact of a Parent Advisory Committee on Hospital Design and Policy,

    Boston Children's Hospital. Childrens Environment Quarterly. Vol 4, No. 3, Fall 1987.

    Just cause youre

    poor doesnt mean

    youre stupidPediatric Mother, ~1984

    There is no force in the world stronger than a mother in

    your face advocating for her kid J. Conway

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    13

    DANA-FARBER ADMITS DRUG OVERDOSE CAUSED

    DEATH OF GLOBE COLUMNIST, DAMAGE TO SECOND

    WOMAN

    When 39-year-old Betsy A. Lehman died suddenly last Dec. 3 at Boston's Dana-Farber

    Cancer Institute, near the end of a grueling three-month treatment for breast cancer, it

    seemed a tragic reminder of the risks and limits of high-stakes cancer care. In fact, it

    was something very different. The death of Lehman, a Boston Globe health columnist,

    was due to a horrendous mistake: a massive overdose of a powerful anticancer drug

    that ravaged her heart, causing it to fail suddenly.

    3/23/1995

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    Key Levers / Learning in Journey The responsibility and power of all

    leadership [trustee, clinical andadministrative] over safety

    The need for relentless vigilance tosafety, risk, error, near-miss, harm

    Addressing the multiple victims of error The crucial role the design of systems

    and application of technology play insupport of safe practice by excellentstaff

    The synergy of interdisciplinary practiceand team work

    Patient and Family Centered Care

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    http://www.asco.org/ASCOv2/Education+%26+Training/Educational+Book?&vmview=edbk_detail_view&confID=40&abstractID=615

    http://www.asco.org/ASCOv2/Education+&+Training/Educational+Book?&vmview=edbk_detail_view&confID=40&abstractID=615http://www.asco.org/ASCOv2/Education+&+Training/Educational+Book?&vmview=edbk_detail_view&confID=40&abstractID=615
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    Set the Expectation

    Position People for Success

    Hold Them Accountable

    Without clarity of expectations,

    deviance cant stand out.Roger Berkowitz,

    Trustee, DFCI

    CEO, Legal Sea Foods1/13/2014 15

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    1996 GOVERNING BOARD PRORITY

    DFCI will be patient and family

    centered in the model of the IPFCC.

    Patients and families will be part of

    all care decision making structuresand processes

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    Expectations for PFCC

    are clear in PQCNC1. Strongly disagree

    2. Disagree

    3. Neither

    4. Agree

    5. Strongly Agree

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    Expectations for PFCC are clear in

    my healthcare organization1. Strongly disagree

    2. Disagree

    3. Neither

    4. Agree

    5. Strongly Agree

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    Strategies: Positioning for Success

    All Staff

    Set clarity ofexpectation

    Engaging Board &

    leadership Key leadership on-

    point

    Integrating acrosscare

    Listening to concerns

    Learning from priorfailures

    Coaching, training,

    IPFCC programs Pacing and quick wins

    Celebrating

    Providing support Modeling from the

    top

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    DFCI: Structures & Processes

    Patient and Family Partnerships

    Committees:Board Quality Committee

    Patient Safety Committee

    Strategic Planning

    Operating

    Leadership Interviews

    New Employee Orientation

    Side by Side

    Resource Centers

    Rescue events NPSF & IHI meetings

    Pediatric ER Fast Track

    End of Treatment

    Renovation / Process Redesign

    Patient Flow

    Understanding Insurance

    Embracing Diversity

    Adult Safety Rounding

    New patient access

    Task Force on Disclosure

    Working on the Wait Customer Service Training

    Falls Task Force

    Medication reconciliation

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    Reid Ponte P, Conlin G, Conway JB, et al. Making patient-centered care come alive: achieving full integration of the patient's perspective. J Nurs Adm 2003; 33(2):82-90.

    Reid Ponte P, Connor M, DeMarco R, Price J. Linking patient and family-centered care and patient safety: the next leap. Nurs Econ 2004; 22(4):211-3, 215.

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    Implementation Challenges

    Nice, not necessary; PR

    Staff & patients: people inVERY different places

    You are crazy!

    Fear of the unknown

    We know what they

    want

    We are different! They will be in the way!

    This will be a time hog

    Silo: Its mine

    Transparency of realities

    Shifting power balance

    Shifting priorities Learning to ask, listen,

    listen more, not jumping

    Getting and embracing

    diversity Ongoing staff orientation

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    Positive Outcomes

    All proud of PFCC practice

    Problem identification

    What they want, wewant!

    We are finding things wedidnt know!

    Prioritized improvement

    Improved outcomes

    Informed growingevidence base

    Interdisciplinarypartnership

    New powerful allies andadvocates

    Huge external recognition

    Presentations/publications

    Funding: Grants & donors Care connection all levels

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    I have seen very positive outcomes

    from our organizational efforts to

    deliver PFCC.1. Strongly disagree

    2. Disagree

    3. Neither4. Agree

    5. Strongly Agree

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    15 Years Later

    Amazing Work Continues

    http://www.dana-farber.org/abo/news/publications/pop/archive.html

    1/13/201424

    http://www.dana-farber.org/abo/news/publications/pop/archive.htmlhttp://www.dana-farber.org/abo/news/publications/pop/archive.htmlhttp://www.dana-farber.org/abo/news/publications/pop/archive.htmlhttp://www.dana-farber.org/abo/news/publications/pop/archive.htmlhttp://www.dana-farber.org/abo/news/publications/pop/archive.html
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    Whats Getting Rewarded!

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    Conclusions. Most hospitalized

    patients participated in someaspects of their care.

    Participation was strongly

    associated with favorable

    judgments about hospitalquality and reduced the risk of

    experiencing an adverse event.

    Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, David-Kasdan JA, Annas CL, Fowler FJ Jr, Weissman JS.

    Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011 Feb 9. [Epub

    ahead of print] Center for Patient Safety, Dana-Farber Cancer Institute, Boston, MA, USA.

    261/13/2014

    Whats Helping Patient Safety Research?

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    Fast Forward to 2013A Joint Presentation to International Leaders at

    Harvard University

    1/13/201427

    Shari Berman, Co-Chair, Adult PFAC, DFCI

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    Patient and Family Advisory Councils

    Mandatory in Mass HospitalsThe purpose of this letter is to inform

    hospitals of their obligation to establish

    a Patient and Family Advisory Council

    (PFAC), as set out in the hospital

    licensure regulation effective June 12,2009. A copy of these sections is

    enclosed. The regulations require each

    hospital to establish a PFAC by October

    1, 2010; and each hospital must prepare

    a report outlining its plan to establish aPFAC no later than September 30,

    2009

    1/13/201428

    http://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdf

    Whats Helping Drive State Policy?

    P ti t d F il C t d C

    http://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdf
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    Patient and Family Centered Care

    A Dynamic Push/Pull

    PushMaking the Status QuoUncomfortable

    Consumer Movement:

    It isnt ours alone to decide

    Patient Rights

    Patient Safety: Voice and face of harm

    AHRQ patient reporting

    Transparency

    Health Reform: Politicians,

    Governments, Nations, States Accreditors

    AARP, Consumer Reports

    NQF, NPP, Picker, Planetree, IFCC,

    IHI, Lucian Leape Institute, WHO

    Making the Future Attractive

    Organizing the healthcare systemaround the patient and family

    Optimizing the patient experience Correlates with other outcomes

    including staff satisfaction andfinancial outcomes

    Patient Centered Outcomes ResearchInstitute

    Patient activation/self management Great stories and results busting out

    all over: IHI BMJ International Forum Health care organizations Associations

    Its the right thing to do

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    Primary Drivers Inpatient PFCC

    Governance and executive leaders demonstratethat NOTHING is more important in the culturethan patient- and family-centered carepracticed everywhere in the hospital.

    The hearts and minds of staff and providers are

    fully engaged. Every care interaction is anchored in a

    respectful partnership anticipating andresponding to patient and family needs(physical comfort, emotional, informational,

    cultural, spiritual and learning). Hospital systems deliver reliable quality care

    24/7.

    The care team instills confidence by providingcollaborative, evidenced-based care.

    30http://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htm 1/13/2014

    http://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htmhttp://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htmhttp://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htm
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    Innovations to Advance Genuine

    Partnerships with Patients/Families

    31

    IOM Rule Example

    Care is

    customized

    Open visitation

    Family participation in care

    Patients establish daily goals

    Patient issource of

    control

    P&F activated rapid response teams Patient choice in meal selection

    P&F participation in change of shift report and

    multidisciplinary rounds

    Knowledgeis shared

    Access to medical records Providing effective teaching and facilitating learning

    Needs are

    anticipated

    Conduct observations of patient experiences

    Observe peace and quiet times

    Taylor, Rutherford. The Pursuit of Genuine Partnerships with patient and family members; the challenge and opportunity

    for executive leaders. Frontiers of Health Services. 2010. 26:4.1/13/2014

    Patient and Family Centered Care Is

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    Patient and Family Centered Care Is

    Person Centered Care Is

    32

    Location Examples

    Environment Community,

    Region, State,

    Province

    Community groups

    Care Coordination, ACOs, Medical Homes

    Advanced care planning, POLST, MOLST

    School & church programs

    Public health & other consumer campaigns

    Organization Health System,Trust, Hospital,

    Nursing Home

    Experience SurveysP&F Councils, Advisors, Faculty

    Resource Centers, patient portals

    Access to help and care 24/7

    Medication lists

    Micro-system Clinic, Ward, Unit,

    ED, Delivery

    Parent, Advisors, & advisory councils

    Open access, optimized flow

    Family participation in rounding

    Experience of

    care

    Bedside, Exam

    Room, Home

    Access to the chart

    Shared care planning

    Smart Patients Ask Questions

    Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family

    Experience of Inpatient Hospital Care. Cambridge, Massachusetts: 2011.1/13/2014

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    In health care, the overarching goal for providers, aswell as for every other stakeholder, must be

    improving value for patients, where value is defined

    as the health outcomes achieved that matter to

    patients relative to the cost of achieving thoseoutcomes. Improving value requires either

    improving one or more outcomes without raising

    costs or lowering costs without compromising

    outcomes, or both.Failure to improve value means, well, failure.

    T. Lee & Michael Porterhttp://hbr.org/2013/10/the-strategy-that-will-fix-

    health-care/

    Strategy That Will Fix Healthcare

    http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/
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    IOM Report:

    Best Care at Lower Cost

    Improved patient engagement is

    associated with better patient experience,health, and quality of life and better

    economic outcomes, yet patient and

    family participation in care decisions

    remains limited.

    iom.edu/bestcare

    341/13/2014

    http://www.iom.edu/bestcarehttp://www.iom.edu/bestcare
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    Patient Clinician Partnerships

    Specific Recommendation

    Engaged, empowered patientsA learning

    health care system is anchored on patient

    needs and perspectives and promotes theinclusion of patients, families, and other

    caregivers as vital members of the

    continuously learning care team.

    351/13/2014

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    We are collectively anchored on patient

    needs and perspectives and we promote the

    inclusion of patients, families, and other

    caregivers as vital members of the

    continuously learning care team.

    1. Strongly disagree

    2. Disagree

    3. Neither4. Agree

    5. Strongly Agree

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    A Powerful Evolution

    Do it to me.Do it for me.

    Do it with me.Martha Hayward

    Patient Advocate

    371/13/2014

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    Questions, Comments

    Quality improvement begins with love and vision.

    Love of your patients. Love of your workIf you begin with technique,

    improvement wont be achieved.

    A. Donabedian, M.D381/13/2014

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    Great New Resource

    1/13/2014 39

    http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/howtogetstarted/index.html

    http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/howtogetstarted/index.htmlhttp://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/howtogetstarted/index.html
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    Selected Bibliography for Conway

    PresentationDFCI Articles Reid Ponte, P, Donlin G, Conway JB, Grant S, Medeiros C, Nies J, Shulman L, Branowicki P, Conley K. Making

    patient-centered care come alive, achieving full integration of the patients perspective. JONA 2003; 33:82-90.

    Conway J., Nathan DG, Benz E, et al. Key learning from the Dana-Farber Cancer Institutes ten-year patient

    safety journey. In Am Soc Clin Oncol 2006 Ed Book. 42nd Annual Meeting, Atlanta, GA, 2006:615-619.

    General PFCC Articles

    Conway J, Johnson B, Edgman-Levitan S, Schlucter J, Ford D, Sodomka P, Simmons L. Partnering with patients

    and families to design a patient- and family-centered health care system: a roadmap for the future. A work in

    progress. Institute for Family-Centered Care and Institute for Healthcare Improvement; June 2006

    Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, Schlucter J, Ford D. Partnering

    with patients and families to design a patient- and family-centered health care system: recommendations and

    promising practices. Bethesda, Maryland: Institute for Family-Centered Care and the Institute for Healthcare

    Improvement; April 2008.

    Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient

    Hospital Care. IHI Innovation Series White Paper. Cambridge, Massachusetts: Institute for Healthcare

    Improvement; 2011. Conway J. Public and Patient Strategies to Improve Health Systems Performance. In: Olsen LA, Saunders RS, and

    McGinnis JM. Patients Charting the Course: Citizen Engagement in the Learning Healthcare System. The

    Learning Healthcare System Series. 2011. Institute of Medicine.

    1/13/2014

    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