ADVANCING

THE PRACTICE
OF PATIENT- AND
FAMILY-CENTERED
CARE IN HOSPITALS
How to Get Started…

Institute for Patient- and Family-Centered Care

6917 Arlington Road, Suite 309
Bethesda, MD 20814
(301) 652-0281
www.ipfcc.org
Updated January 2017
Patient- and family-centered care is an approach to the planning, delivery, and evaluation
of health care that is grounded in mutually beneficial partnerships among patients, families,
and health care professionals. These partnerships at the clinical, program, and policy levels
are essential to assuring the quality and safety of health care.
Since 1992, the Institute for Patient- and Family-Centered Care (IPFCC) has provided
national and international leadership to advance the understanding and practice of patient-
and family-centered care. IPFCC promotes change in organizational culture and enhances
the quality and safety of health care through its on-site and off-site training and technical as-
sistance; webinars, seminars, and international conferences; development of print and digital
guidance resources; information dissemination; research; and policy initiatives.
IPFCC serves as a resource to hospital and health system administrative and clinical leaders,
program planners, direct service providers, patient experience officers, educators of health
care professionals, researchers, facility design professionals, and patient and family leaders.
Visit the IPFCC website at www.ipfcc.org for additional resources, tools, schedule of events,
information about the Better Together: Partnering with Families campaign, and profiles of
organizational change.

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W
hat is patient- and family-centered care? Why does it matter? How does it fit with
our hospital’s overall mission? And finally, what can our hospital do to advance
the practice of patient- and family-centered care? Where do we start?
Today, hospital leaders, staff, patients, and families nationwide are asking these questions.
The purpose of this document is to provide some answers.
Part I, provides a rationale for a patient- and family-centered approach to care, and defines its
core concepts.
Part II, outlines steps a hospital can take to begin to create partnerships with patients and
families, and offers practical suggestions for getting started.
Part III, “The Role of Leaders” outlines the various roles and related action steps for leaders
to implement to build the infrastructure to support and sustain effective partnerships with
patients and families.
Part IV, “Where Do We Stand?,” provides a self-assessment tool that hospitals can use to de-
termine the degree to which patient- and family-centered approaches are embedded in their
current organizational culture.
Part V, “Selecting, Preparing, and Supporting Patient and Family Advisors,” offers practical
guidance for beginning the process of identifying, recruiting, and sustaining the involve-
ment of advisors.
Part VI, “A Checklist for Attitudes About Partnering with Patients and Families,” provides
a tool for gathering information about the perceptions and attitudes of staff and adminis-
trative leaders.
Part VII lists selected print and audiovisual resources.

PART I: WHAT IS PATIENT- AND FAMILY-CENTERED CARE?

Rationale
In their efforts to improve health care quality and safety, hospital leaders today increasingly
realize the importance of including a perspective too long missing from the health care equa-
tion: the perspective of patients and families. The experience of care, as perceived by the
patient and family, is a key factor in health care quality and safety.
Bringing the perspectives of patients and families directly into the planning, delivery, and
evaluation of health care, and thereby improving its quality and safety is what patient- and
family-centered care is all about. Studies and experience increasingly show that when health
care administrators, providers, and patients and families work in partnership, the quality and
safety of health care rise, costs decrease, and provider and patient satisfaction increase.

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Core Concepts
WW Dignity and Respect. Health care practitioners listen to and hon-
or patient and family perspectives and choices. Patient and family
knowledge, values, beliefs, and cultural backgrounds are incorpo-
rated into the planning and delivery of care.
WW Information Sharing. Health care practitioners communicate
and share complete and unbiased information with patients and
families in ways that are affirming and useful. Patients and families
receive timely, complete, and accurate information in order to ef-
fectively participate in care and decision-making.
WW Participation. Patients and families are encouraged and sup-
ported in participating in care and decision-making at the lev-
el they choose.
WW Collaboration. Patients, families, health care practitioners, and
health care leaders collaborate in policy and program development,
implementation, and evaluation; in facility design; in research; and
in professional education, as well as in the delivery of care.

Partnerships with Patients and Families – Perspectives of Leaders

“…in a growing number of instances where truly stunning levels of improvement have been
achieved, organizations have asked patients and families to be directly involved in the process.
And those organizations’ leaders often cite this change—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, Bisagnano, & Pugh. (2008). Seven Leadership Leverage
Points for Organization-Level Improvement in Health Care

“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.”
Leape, Berwick, Clancy, Conway, et al. (2009). Transforming Healthcare:
A Safety Imperative. BMJ’s Quality and Safety in Health Care

The IOM report, Best Care at Lower Cost: The Path to Continuously Learning Health
Care in America, offers ten key recommendations; the fourth states:
“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.”
IOM Committee on the Learning
Health Care System in America. (2013)

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PART II: MOVING FORWARD WITH PATIENT- AND FAMILY-
CENTERED CARE: ONE STEP AT A TIME
Establishing patient- and family-centered care requires a long-term commitment. It entails
transforming the organizational culture. This approach to care is a journey, not a destina-
tion—one that requires continual exploration and evaluation of new ways to collaborate
with patients and families.
The following steps can help set a hospital or health system on its journey toward patient-
and family-centered care.
1. Implement a process for all senior leaders to learn about patient- and family-centered
care. Include patients, families, and staff from all disciplines in this process.
2. Identify an executive sponsor(s) for patient- and family-centered care. Designate a staff
liaison for collaborative endeavors to facilitate the process for development of sustained
partnerships with patients and families and support their involvement throughout the
organization
3. Appoint a patient- and family-centered steering committee comprised of patients and
families and formal and informal leaders of the organization.
4. Assess the extent to which the concepts and principles of patient- and family-centered
care are currently implemented within your hospital or health system. (A brief initial
self-assessment tool appears in Part IV of this document.)
5. On the basis of the assessment, set priorities and develop an action plan for establishing
patient- and family-centered care at your institution.
6. Using the action plan as a guide, begin to incorporate patient- and family-centered con-
cepts and strategies into the hospital’s strategic priorities. Make sure that these concepts are
integrated into your organization’s mission, philosophy of care, and definition of quality.
7. Invite patients and families to serve as advisors in a variety of ways. Appoint some of
these individuals to key committees and task forces.
8. Provide education and support to patients, families, and staff on patient- and family-
centered care and on how to collaborate effectively in quality improvement and health
care redesign. For example, provide opportunities for administrators and clinical staff to
hear patients and family members share stories of their health care experiences during
orientation and continuing education programs.
9. Monitor changes made, evaluate processes, measure the impact, continue to advance
practice, and celebrate and recognize success.

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PART III: THE ROLE OF LEADERS IN BUILDING THE
INFRASTRUCTURE TO SUPPORT AND SUSTAIN
EFFECTIVE PARTNERSHIPS
Hospitals that have been successful in partnering with patients and families to advance pa-
tient- and family-centered care have leaders who understand that their commitment and
their support is essential. This section lists roles and action steps that leaders can use to guide
their efforts.

Essential Roles Key Action Steps

Leaders make an explicit commit- • Build leadership commitment to partnerships.
ment to patient- and family-centered • Serve as role models – walk the talk.
care and serve as role models for en-
gaging in partnerships with the indi- • Serve as the executive champion/s for patient-
viduals and families they serve across and family-centered care and for partnerships
the continuum of care. with patients and families.
Leaders provide resources and sup- • Establish the infrastructure to support
port for partnerships with the indi- partnerships.
viduals they serve. • Assess the current status of patient- and family-
centered care.
• Remove institutional and attitudinal barriers to
patient- and family-centered care.
• Create opportunities for administrators, phy-
sicians, staff, patients, and families to learn
how to partner.
Leaders encourage partnerships as • Partner with advisors to develop strategies and
a pathway to improve health care tools to prepare patients and families to become
quality and safety. active in ensuring the quality and safety of care.
• Involve patient and family advisors in strength-
ening the capacity of an organization to ensure
quality and safety.
Leaders oversee and encourage part- • Partner with patients and families to change and
nerships with patients and families improve care practices.
in strategic initiatives. • Partner with patients and families to enhance
planning for changes to the built environment.
• Partner with patients and families to expand the
use and usefulness of information technology.
• Partner with patients and families to improve the
education of health care professionals.

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 Leaders put systems in place to • Measure the effect of patient- and family-cen-
measure the outcomes of collabora- tered care on key outcomes.
tive processes. • Document the efforts and impact of patient and
family advisors.
• Share outcomes with leaders, clinicians, staff, pa-
tients, families, and community members.
Leaders recognize that profound or- • Affirm the commitment to patient- and family-
ganizational change takes time. centered care.
• Celebrate the successes.
Adapted from Johnson, B. H., & Abraham, M. A. (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.

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PART IV: WHERE DO WE STAND? A SELF-ASSESSMENT TOOL
FOR HOSPITAL TRUSTEES, ADMINISTRATORS,
PROVIDERS, AND PATIENT AND FAMILY LEADERS
An effective action plan for moving forward with patient- and family-centered care is based
on a thoughtful assessment of the degree to which a hospital has already incorporated key
principles of this approach to care, and of the areas in which progress remains to be made.
Here are some questions that can serve as a springboard for such an assessment. Ideally,
the assessment should be completed individually by hospital executives, managers, frontline
staff, and patient and family advisors. Representatives of each of these groups should then
convene to discuss the responses and, together, develop an action plan.

INITIAL HOSPITAL SELF-ASSESSMENT

Leadership in the Organization

FF Do our organization’s vision, mission, and philosophy of care state-
ments reflect the principles of patient- and family-centered care and
promote partnerships with the patients and families it serves?
FF Has our organization defined quality health care and does this defini-
tion include how patients and families will experience care?
FF Do our organization’s leaders, through their words and actions, hold
staff accountable for patient- and family-centered practice?
FF Do our organization’s leaders, through their words and actions, hold
physicians accountable for patient- and family-centered practices?

Patient and Family Advisors

FF Does our hospital have an active patient and family advisory council?
FF Do patient and family advisors serve on committees or work groups
involved with:
Community
VV services and programs?
Culturally
VV and linguistically appropriate services and materials?
Discharge/Transition
VV planning?
Education
VV and orientation for staff, physicians, students,
and trainees?
Ethics?
VV

Facility
VV design?

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 Patient
VV and family education?
Patient
VV and family experience of care?
Patient
VV safety?
Peer-led
VV education and support?
Policy
VV and procedure development?
Quality
VV improvement?
Research
VV initiatives?
Use
VV of information technology?
FF Do patient and family advisors serving on councils, committees, and
work groups reflect the cultural and linguistic diversity of patients and
families served by our organization?

Environment and Design

FF Does the design of our hospital:
Create
VV positive and welcoming impressions throughout for pa-
tients and families?
Display
VV messages that communicate to patients and families that
they are essential members of the health care team?
Reflect
VV the diversity of patients and families served and address
their unique needs?
Provide
VV for the privacy and comfort of patients and families?
Support
VV the presence and participation of families?
Support the collaboration of physicians and staff across disciplines?
VV

Patient and Family Participation in Care and Decision-Making

FF Are our organization’s policies, programs, and staff practices consistent
with the view that families are not visitors but instead are viewed as al-
lies for patient health, safety, and well-being?
FF Are patients asked to identify their family/community caregivers and
specify how they will be involved in care and decision-making?
FF Are patients and their families encouraged and supported to participate
in care planning and decision-making during the hospital stay?
FF Are the cultural and spiritual beliefs and practices of patients and fami-
lies respected and incorporated into care planning and decision-making?

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 FF Are patients and their families encouraged and supported to be present
and to participate in nurse change of shift report?
FF Are patients and their families encouraged and supported to be present
and to participate in rounds?
FF Are patients and their families able to activate a Rapid Response Team?
FF Are patients and their families encouraged to identify their learning
needs and priorities regarding care at home as a key component of dis-
charge/transition planning?

Patient and Family Access to Information and Education

FF Are there systems in place to ensure that patients and families:
Have
VV access to complete, unbiased, and useful information?
Understand
VV the purpose of taking each of their medications?
Understand
VV the things they are responsible for in managing
their health?
Receive
VV written information that is provided in primary language
and appropriate educational levels of patients and families served
by the organization?
Have access to interpreter services whenever they are needed to ef-
VV
fectively communicate with physicians and staff about care, treat-
ment, and services?
FF Do patients and their families have easy access (view at any time or
receive a copy) to their:
Clinical
VV information (e.g., laboratory or diagnostic tests)?
Daily
VV recording of care (e.g., notes from nurses, physicians,
allied health)?
Discharge
VV summary?
Medical
VV records?
FF Do providers and staff across disciplines and settings (inpatient, spe-
cialty care, and primary care providers) have easy access to the patient’s
medical record?
FF Do documentation systems and charting support the recording of pa-
tients’ and families’:
Priority
VV concerns for the hospital stay?

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 Observations?
VV

Goals?
VV

Preferences?
VV

FF Are peer-led educational programs available and accessible to patients

and families?
FF Are patients and their families provided with practical information and
strategies on how to best partner with health care providers to assure
safety in health care?

Human Resources
FF Do our organization’s human resources system support and encourage
the practice of patient- and family-centered care?
FF Do leadership, staff, and physicians reflect the diversity of patients and
families served by our hospital?
FF Are patients and families involved in the hiring process for administra-
tive and clinical leaders?
FF Are systems in place that ensure that individuals with patient- and fam-
ily-centered care skills and attitudes are hired?
FF Does our hospital offer rewards and recognition for patient- and fami-
ly-centered practice?
FF Are there explicit expectations that all staff and physicians respect and
collaborate with patients, families, and staff across disciplines and
departments in:
Position
VV descriptions?
Performance
VV appraisal processes?

Education of Leaders, Staff, Physicians, Students, and Trainees

FF Do orientation and education programs prepare staff, physicians, stu-
dents, and trainees for patient- and family-centered practice and col-
laboration with patients, families, and other disciplines?
FF Do orientation and education programs prepare staff, physicians, stu-
dents, and trainees for culturally responsive practice?
FF Are patients and families involved as faculty in orientation and educa-
tion programs for leaders, staff, physicians, students, and trainees?

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Reflecting on Opportunities and Priorities
After completing the self-assessment and discussing the responses, the team can decide in
which of the following areas, your hospital can begin to partner with patients and families to
make changes to advance the practice of patient- and family-centered care:
FF Community services and programs?
FF Culturally and linguistically appropriate services and materials?
FF Discharge/Transition planning?
FF Education and orientation for staff, physicians, students, and trainees?
FF Ethics?
FF Facility design?
FF Patient and family education?
FF Patient and family experience of care?
FF Patient safety?
FF Peer-led education and support?
FF Policy and procedure development?
FF Quality improvement?
FF Research initiatives?
FF Use of information technology?
Additional organizational and self-assessment tools are available at: www.ipfcc.org/resources/
assessment.html

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PART V: SELECTING, PREPARING, AND SUPPORTING PATIENT
AND FAMILY ADVISORS
Hospitals are increasing their efforts to partner with patients and families in policy and
program development, patient safety, quality improvement, patient experience, health care
redesign, professional education, facility design planning, and research and evaluation. They
are asking patients and families to serve on patient and family advisory councils and on com-
mittees, task forces, and project teams. Appropriate selection, preparation, and support of
patient and family advisors are key to effective partnerships.

Selecting Patient and Family Advisors

A patient or family advisor is an individual or family member who has experienced care
in the hospital. In identifying patient and family advisors, look for individuals who have
demonstrated an interest in partnering with providers in their care or the care of their fam-
ily member. Consider those who have offered constructive ideas for change and who have a
special ability to help staff and physicians better understand the patient or family perspective.
Seek individuals who are able to:
WWShare insights and information about their experiences in ways
that others can learn from them.
WWSee beyond their personal experiences.

WWShow concern for more than one issue.

WWListen well.

WWRespect the perspectives of others.

WWInteract well with many different kinds of people.

WWShow a positive outlook on life and a sense of humor.

WWSpeak comfortably in a group with candor.

WWWork in partnership with others.

To find individuals with these qualities and skills, ask physicians and other clinicians for sug-
gestions. Review letters or emails from patients or families that have provided constructive
feedback to the hospital. Include information about patient and family advisors in informa-
tional materials on the institution’s website, and in patient experience and satisfaction surveys.
Patient representatives or ombudsmen, community outreach workers, and current patient and
family advisors may also be able to identify potential advisors. Contacting community groups
is another way to find individuals who might be interested in serving as advisors.

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Informing Potential Patient and Family Advisors About Role
Before individuals can make decisions about whether they wish to participate on an advisory
council patient safety committee, a quality improvement team, or in other health care rede-
sign initiatives, they should be informed of the responsibilities and privileges associated with
the role. A fact sheet, containing the following information, can be prepared and offered to
individuals who are being asked to participate:
WWMission and goals of the council, committee, or project.

WWExpectations for their participation.

WWMeeting times, frequency, and duration.

WWTravel dates.

WWExpectations for communication among team members be-

tween meetings.
WWTime commitment beyond meeting times.

WWReimbursement or compensation offered.

WWBenefits of participation (i.e., what are the expected outcomes of

their involvement).
WWTraining and support to be provided.

Reimbursement/Compensation
At a minimum, the organization should reimburse patients and families for expenses incurred
in association with their work with the team (e.g., parking, transportation, child care). Some
organizations also offer stipends or honoraria for participation in meetings. These payments
typically range from $12 - $25 per meeting. Consider the needs of the patient or family advi-
sor and ask about their preferences. If they have no means to cash a check, stipends will have
to be offered in an alternative way (e.g., store voucher, gift card, cash).

Preparing and Supporting Patient and Family Advisors

In order for patients and families to participate effectively as advisors, appropriate orienta-
tion, training, preparation, and support should be provided. Patient and family advisors
should have a chance to discuss their questions or thoughts about the work with a staff liai-
son who has time dedicated to coordinating activities with advisors.
The orientation for patient and family advisors should include information on the follow-
ing as relevant:
WWThe mission, goals, and priorities of the health system or hospital.

WWPatient- and family-centered care.

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 WWOverview of patient experience, quality, and safety issues
and strategies.
WWSpecific skills and knowledge needed to be an effective team
member (e.g., quality improvement methodology for those
serving on a quality improvement team).
WWHIPAA and the importance of privacy and confidentiality.

WWCommunicating collaboratively:

cc Expressing your perspective so others will listen.

cc How to ask tough questions.
cc What to do when you don’t agree.
cc Listening to, and learning from, the perspectives of others.
cc Thinking beyond your own experience.
If the organization has a volunteer program, its orientation and training may be very useful
for patient and family advisors. Other training issues to consider include:
WWSpeaking the organization’s language, “Jargon 101.” While it is best
to reduce the amount of jargon used in collaborative endeavors,
sometimes it is impossible to completely eliminate jargon. If there
are terms that will be used frequently in meetings, make sure that
patient and family advisors understand them. Encourage them to
ask for an explanation of anything they don’t understand.
WWWho’s who in the organization or on the project team and how to
contact team members.
WWHow to prepare for a meeting: what to wear, what to do ahead of
time, and what to bring.
WWHow meetings are conducted: format, agenda, minutes, roles (e.g.,
secretary, timekeeper).
WWTraining for any technologies that will be used (e.g., conference
calls, web-based tools).
WWHow to prepare for any conferences, seminars or other events:
making travel arrangements, all logistical information (e.g., hotel,
transportation from airport to hotel), expenses that are covered,
reimbursement procedures, what to wear, what to bring, and how
to prepare for the session. Some patients and families may not have
credit cards and therefore will have difficulty in making travel ar-
rangements and will need assistance in planning travel and check-
ing in to a hotel.

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It is extremely helpful for new patient and family advisors to have a “coach” or mentor who
can provide informal ongoing support to them. A member of the council or committee who
has experience working on collaborative initiatives (either a staff person or an experienced
patient/family advisor) can be assigned to this role. This person can ensure that patient
and family advisors are prepared for each meeting. During meetings, this person can also
actively encourage participation of the advisor. Also they can debrief after each meeting to
determine what additional information or resources patient and family advisors need. Most
importantly, they can support patient and family advisors in participating fully on the team
by providing feedback and encouragement.

Believe Patient and Family Participation is Essential

The single most important guideline for involving patients and families in advisory roles
is to believe that their participation is essential to the design and delivery of optimum care
and services. Without sustained patient and family participation in all aspects of policy and
program development and evaluation, the health care system will fail to respond to the
real needs and concerns of those it is intended to serve. Effective patient/family/ provider
partnerships will help to redesign health care and safety and quality. It will lead to better
outcomes and enhance efficiency and cost-effectiveness. Providers will also discover a more
gratifying, creative, and inspiring way to practice.

Involving patients and families as partners and advisors will...

WWBring important perspectives about the experience of care.

WWTeach how systems really work.

WWInspire and energize staff.

WWKeep staff grounded in reality.

WWProvide timely feedback and ideas.

WWLessen the burden on staff to fix the problems... staff don’t

have to have all the answers.
WWBring connections with the community.

WWOffer an opportunity for patients and families to “give back.”

The tool, “Patients and Families as Advisors: A Checklist for Attitudes,” can be used to help
physicians and staff assess their own attitudes and beliefs about partnerships with patients
and families.
This material has been adapted from two resources: Developing and Sustaining a Patient and
Family Advisory Council and Essential Allies—Patient, Family, and Resident Advisors: A Guide
for Staff Liaisons published by the Institute for Patient- and Family-Centered Care.

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PART VI: A CHECKLIST FOR ATTITUDES ABOUT PARTNERING
WITH PATIENTS AND FAMILIES
Use this tool to explore attitudes about patient and family involvement in their own health care
and as advisors. It can be used for self-reflection and as a way to spark discussion among staff and
physicians before beginning to work with patients and families as members of advisory coun-
cils, and quality improvement, patient safety, policy and program development, and health care
redesign teams.

Answer and discuss the following questions:

In each clinical interaction:

FF Do I believe that patients and family members bring unique perspec-

tives and expertise to the clinical relationship?
FF Do I encourage patients and families to speak freely?
FF Do I listen respectfully to the opinions of patients and family members?
FF Do I encourage patients and family members to participate in decision-
making about their care?
FF Do I encourage patients and family members to be active partners in
assuring the safety and quality of their own care?
At the organizational level:

FF Do I consistently let colleagues know that I value the insights of pa-

tients and families?
FF Do I believe that patients and families can play an important role in im-
proving patient experience, safety, and quality within the organization?
FF Do I believe in the importance of patient and family participation in
planning and decision-making at the program and policy level?
FF Do I believe that patients and families bring a perspective to a project
that no one else can provide?
FF Do I believe that patients and family members can look beyond their
own experiences and issues?
FF Do I believe that the perspectives and opinions of patients, families,
and providers are equally valid in planning and decision-making at the
program and policy level?

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If you have experience working with patients and families as advisors, answer and
discuss these additional questions:

FF Do I understand what is required and expected of patients and families

who serve as advisors?
FF Do I help patients and families set clear goals for their roles?
FF Do I feel comfortable delegating responsibility to patient and
family advisors?
FF Do I understand that an illness or other family demands may require
patients and family members to take time off from their responsibili-
ties as advisors?
Adapted from Minniti, M., & Abraham, M. (2013). Essential Allies—Patient, Family, and
Resident Advisors: A Guide for Staff Liaisons. Bethesda, MD. Institute for Patient- and Family-
Centered Care.

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PART VII: SELECTED RESOURCES

Available from the Institute for Patient- and Family-Centered Care

Abraham, M., Ahmann, E., & Dokken, D. (2013). Words of advice: A guide for patient, family,
and resident advisors. Bethesda, MD: Institute for Patient- and Family-Centered Care.
Conway, J., Johnson, B. H., Edgman-Levitan, S., Schlucter, J., Ford, D., Sodomka, P., &
Simmons, L. (2006). Partnering with patients and families to design a patient- and family-
centered health care system: A roadmap for the future. Bethesda, MD: Institute for Family-
Centered Care. Retrieved from www.ipfcc.org/pdf/Roadmap.pdf
Crocker, L., & Johnson, B. (2014). Privileged presence: Personal stories of connections in health
care (2nd ed.). Boulder, CO: Bull Publishing Company.
Crocker, L., Webster, P. D., & Johnson, B. H. (2012). Developing patient- and family-centered
vision, mission, and philosophy of care statements. Bethesda, MD: Institute for Patient- and
Family-Centered Care.
Institute for Patient- and Family-Centered Care. (2012). Partnerships with patients, residents,
and families: Leading the journey [video]. Bethesda, MD: Institute for Patient- and
Family-Centered Care. www.ipfcc.org/resources/videos-dvds.html
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-
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Minniti, M., & Abraham, M. (2013). Essential allies—Patient, family, and resident advisors:
A guide for staff liaisons. Bethesda, MD. Institute for Patient- and Family-Centered Care.
National Partnership for Women & Families. (2015). Getting started: Patient- and family-
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for Women & Families. Available from www.ipfcc.org/resources/videos-dvds.html

Visit IPFCC’s website for additional written and audiovisual resources at www.ipfcc.org.

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Additional Resources
Agency for Healthcare Research and Quality. (2014, December). Advancing the practice of
patient- and family-centered care in hospitals. Retrieved from https://innovations.ahrq.
gov/issues/2014/12/17/advancing-practice-patient-and-family-centered-care-hospitals
Agency for Healthcare Research and Quality. (2013, June). Guide to patient and family
engagement in hospital quality and safety. Retrieved from https://innovations.ahrq.gov/
qualitytools/guide-patient-and-family-engagement-hospital-quality-and-safety
American Academy of Pediatrics, Committee on Hospital Care, & Institute for Patient- and
Family-Centered Care. (2012). Patient- and family-centered care and the pediatrician’s
role. Pediatrics, 129(2), 394-404. doi:10.1542/peds.2011-3084
American Hospital Association Committee on Research. (2013). Engaging health care users:
A framework for healthy individuals and communities. Chicago, IL: American Hospital
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American Hospital Association, Institute for Family-Centered Care. (2004). Strategies for
leadership: Patient and family-centered care. Chicago, IL: American Hospital Association.
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patientcentered.shtml
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).
Brown, S. M., Beesley, S. J., & Hopkins, R. O. (2016). Humanizing intensive care: Theory,
evidence, and possibilities. In J. L. Vincent (Ed.), Annual update in intensive care and
emergency medicine 2016 (pp. 405-420). Switzerland: Springer International Publishing.
Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J.
(2013). Patient and family engagement: A framework for understanding the elements
and developing interventions and policies. Health Affairs, 32(2), 223-231. doi:10.1377/
hlthaff.2012.1133
Carpman, J. R., & Grant, M. A. (2016). User participation in health-care facility design
in Design that cares: Planning health facilities for patients and vsitors (3rd Ed). San
Francisco: Jossey-Bass.
Dokken, D. L., Kaufman, J., Johnson, B. H., Perkins, S. B., Benepal, J., Roth, A.,…Jones,
A. (2015). Changing hospital visiting policies: From families as “visitors” to families as
partners. Journal of Clinical Outcomes Management, 22(1), 29-36.
Dudley, N., Ackerman, A., Brown, K. M., & Snow, S. K. (2015). Patient- and family-
centered care of children in the emergency department. Pediatrics, 135(1), e255-e272.
doi:10.1542/peds.2014-3424

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Fulmer, T., & Gaines, M. (2014). Partnering with patients, families, and communities to link
interprofessional practice and education [Conference recommendations]. New York, NY:
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publication/partnering-with-patients-families-and-communities-to-link-interprofessional
Health Research & Educational Trust. (2015, March). Partnering to improve quality and
safety: A framework for working with patient and family advisors. Chicago, IL: Author.
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Health Research & Educational Trust. (2014, October). Hospital-based strategies for creating
a culture of health. Chicago, IL: Author. Retrieved from www.hpoe.org/cultureofhealth
Herrin, J., Harris, K. G., Kenward, K., Hines, S., Joshi, M. S., & Frosch, D. L. (2015).
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IOM Committee on the Learning Health Care System in America. (September 2012). Best
care at lower cost: The path to continuously learning health care in America. Washington,
DC: The National Academies Press. Washington, DC: The National Academies Press.
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Johnson, B. H. (2016). Promoting patient- and family-centered care through personal
stories. Academic Medicine, 19(3), 1-4.
Leape, L., Berwick, D., Clancy, C., & Conway, J., Gluck, P., Guest, J…Isaac, T. (2009).
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for organization-level improvement in health care (2nd ed.). Cambridge, MA: Institute for
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Physicians, Society of General Internal Medicine, Society of Hospital Medicine,
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turning negative patient experiences into positive learning opportunities. BMJ Quality
& Safety, 24(1), 4-6.

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Taylor, J., & Rutherford, P. (2010). The pursuit of genuine partnerships with patients and
family members: The challenge and opportunity for executive leaders. Frontiers of Health
Services Management, 26(4), 3-14.
Weinberger, S. E., Johnson, B. H., & Ness, D. L. (2014). Patient- and family-centered
medical education: The next revolution in medical education? Annals of Internal Medicine,
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Wynn, J. D., Draffin, E., Jones, A., & Reida, L. (2014). The Vidant Health quality
transformation. Joint Commission Journal for Quality and Patient Safety, 40(5), 212-218.

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