ADVANCING

THE PRACTICE
OF PATIENT- AND
FAMILY-CENTERED
CARE IN PRIMARY
CARE AND OTHER
AMBULATORY
SETTINGS
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
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 techni-
cal assistance; webinars, seminars, and international conferences; development of print and
digital guidance resources; information dissemination; research; and policy initiatives.

IPFCC serves as a resource to primary care and other ambulatory care, hospital, and health
system administrative and clinical leaders, program planners, direct service providers, pa-
tient experience officers, educators of health care professionals, researchers, facility design
professionals, and patient and family leaders.

For further information about patient- and family-centered care in primary care and other
ambulatory settings, visit www.ipfcc.org/advance/topics/primary-care.html.

© 2016 Institute for Patient- and Family-Centered Care

The Institute for Patient- and Family-Centered Care (IPFCC) encourages sharing of IPFCC guidance resources to
facilitate improvement and health care redesign. Therefore authorization to reproduce materials (whole or in part)
for educational purposes is granted. While permission is not necessary, we request that you indicate: “Reprinted with
permission from the Institute for Patient- and Family-Centered Care: www.ipfcc.org.”

If you plan to insert IPFCC material into your organization’s documents or publications, we ask that you request
permission at email: [email protected]. Please include your contact information and a description of your proposed use.

ADVANCING THE PRACTICE OF PATIENT- AND FAMILY-CENTERED CARE IN PRIMARY

CARE AND OTHER AMBULATORY SETTINGS: HOW TO GET STARTED
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hat is patient- and family-centered care? Why does it matter? How does it fit with our
primary care or ambulatory practice’s overall mission? And finally, what can our clinic
do to advance the practice of patient- and family-centered care? Where do we start?
Today, leaders, clinicians, 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, defines its core
concepts, and highlights the views of key leaders and leadership organizations about the impor-
tance of patient and family partnerships to ambulatory transformation and the development of
the medical home.
Part II outlines steps a primary care clinic or ambulatory practice can take to begin to create part-
nerships 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
build the infrastructure to support and sustain effective partnerships with patients and families.
Part IV, “Where Do We Stand?,” describes a self-assessment process for a practice to determine
the degree to which patient- and family-centered approaches are embedded in an ambulatory
practice’s current organizational culture.
Part V “Recruiting, Selecting, Preparing, and Supporting Patient and Family Advisors,” offers
practical guidance for beginning the process of partnering with patient and family advisors in
change and improvement.
Part VI, “Selecting a Partnership Approach: Patient and Family Advisory Council or Integration
of Advisors into Existing Teams,” provides a tool for deciding which mechanism is best for involv-
ing patients and families as advisors in your practice transformation.
Part VII lists selected print and audiovisual resources.

Part VIII, “Appendices,” includes three practical tools for beginning the development of effective
partnerships with patients and families in ambulatory care.
Appendix A—Partnering with Patients and Families: An Ambulatory Practice Self-Assessment

Appendix B—Partnering with Patients and Families in Primary Care Improvement and Redesign:
A Worksheet to Support Progress
Appendix C—Sample Application for Patient and Family Advisors in Ambulatory Care

Appendix D—Suggestions for Interview Questions in Selecting Patient and Family Advisors

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

Rationale
In their efforts to improve health care quality and safety, health care leaders today increas-
ingly realize the importance of including a perspective too long missing from the health care
equation: 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.

Definition
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.

Core Concepts
Dignity and Respect. Health care practitioners listen to and honor patient and family
perspectives and choices. Patient and family knowledge, values, beliefs, and cultural back-
grounds are incorporated into the planning and delivery of care.
Information Sharing. Health care practitioners communicate and share complete and un-
biased information with patients and families in ways that are affirming and useful. Patients
and families receive timely, complete, and accurate information in order to effectively par-
ticipate in care and decision-making.
Participation. Patients and families are encouraged and supported in participating in care
and decision-making at the level they choose.
Collaboration. Patients, families, health care practitioners, and health care leaders collabo-
rate in policy and program development, implementation, and evaluation; in facility design;
in professional education; and in research, as well as in the delivery of care.

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 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.”
—Reinersten, et al., Seven Leadership Leverage Points for
Organization-Level Improvement in Health Care, 2008
“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, et al., Quality and Safety in Health Care, 2009
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.”
—Institute of Medicine, Best Care at Lower Cost: The Path to
Continuously Learning Health Care in America, 2012

The Role of Patients and Families in Patient-Centered Medical

Home Implementation
The Joint Principles for the Medical Home, signed by key primary care organizations in
2007, embraced the concept of partnership at all levels of care:
}}“…A care planning process driven by a compassionate, robust
partnership between physicians, patients, and the patient’s family…
}} Patients actively participate in decision-making…
}} Care is coordinated. . .in a culturally and linguistically appropriate way.
}} Information
technology is utilized appropriately to support…enhanced
communication.
}} Patients and families participate in quality improvement at the
practice level.”
—AAFP, AAP, ACP, & AOA, Joint Principles of the Patient
Centered Medical Home, February 2007

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Many physician organizations and practices are in some phase of implementing a Patient-
Centered Medical Home (PCMH). The PCPCC report, Benefits of Implementing the Primary
Care Patient-Centered Medical Home: Review of Cost & Quality Results, states:
“…the PCMH improves health outcomes, enhances the patient experience of care and reduces
expensive, unnecessary hospital and ED care.”
—Nielsen, et al., Benefits of Implementing the Primary Care Patient-
Centered Medical Home: Review of Cost & Quality Results, 2012
Positive outcomes can be substantially accelerated through patient- and family-centered
practices. This is especially true when patients and families are involved in quality improve-
ment and redesign efforts.
Based on almost seven years of experience with PCMH collaboratives, McCallister and col-
leagues reported that:
“…family-centered care with parents as improvement partners” was one of the most significant
drivers for transformation.”
—McAllister, et al., Annals of Family Medicine, 2013
In a large-scale implementation of PCMH concepts in the VA, among the steps identified
as critical to establishing successful medical homes was:
“engaging patients and other key stakeholders in redesigning care processes…”
—Klein, The Veterans Health Administration: Implementing Patient-Centered
Medical Homes in the Nation’s Largest Integrated Delivery System, 2011
In a study of 112 primary care practices, Han and colleagues suggested that while only
33% involve patients in quality improvement, those that do, experience significant benefits.
They reported:
“These practices stated that robust patient involvement in every aspect of the practice, including
designing effective patient engagement strategies, positively affected the way in which patients
and families interacted with physicians and staff, supporting stronger relationships and
enabling patients to feel more empowered to become active partners in their care.”
—Han, et al., Health Affairs, 2013
In their commentary about factors that are critical to creating medical homes, Homer and
Baron noted:
“In our experience, the unique perspective that family members bring refocuses transformation
efforts away from provider concerns and toward bringing value for families and patients.”
—Homer & Baron, Journal of General Internal Medicine, 2010

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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. An organizational culture that embraces the concepts of respect
and dignity for all, effective sharing of information, patient and family participation in care
and decision-making, and authentic partnerships with patients and families in direct care
and at the practice level is beneficial to all—clinicians, staff, patients, and families.
The following steps can help set a primary care or ambulatory practice on its journey in
developing effective partnerships with patients and families and advancing the practice of
patient- and family-centered care.
1. Appoint a practice leader as an Executive Sponsor.
2. Designate a Staff Liaison to coordinate and support work with patient and family advisors.
3. Identify at least two patient or family advisors to serve on the clinical transformation team.
4. Implement a process for key leaders and the clinical transformation team to learn about
patient- and family-centered care and partnerships with patients and families in pri-
mary care and other ambulatory care.
5. Assess the extent to which patient- and family-centered core concepts and strategies are
currently implemented within your primary care or other ambulatory practice. (More
information about this assessment process can be found in Part IV and Appendix A.)
6. Identify initial roles for patient and family advisors.
7. Determine the qualities and skills that advisors serving in the above roles should have.
8. Develop a patient and family advisor recruitment and selection plan, informational
materials for recruitment, and an application form.
9. Provide an orientation program for patient and family advisors and prepare them for
serving on improvement and practice transformation initiatives.
10. Provide education and support for administrative leaders, clinicians, and staff for col-
laborating with patient and family advisors.
11. Plan and facilitate initial working meetings with patient and family advisors.
12. On the basis of the self-assessment, partner with patient and family advisors to set
priorities and develop an action plan for changes and improvements to advance the
practice of patient- and family-centered care.
13. Track changes and new initiatives. Document results.

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14. Evaluate processes, measure the impact of collaborative endeavors, continue to advance
the practice of patient- and family-centered care, and celebrate and recognize success.
A detailed worksheet to support the progress in advancing the practice of patient- and fami-
ly-centered care and developing partnerships with patient and family advisors can be found
in Appendix B.

PART III: THE ROLE OF LEADERS IN BUILDING THE

INFRASTRUCTURE TO SUPPORT AND SUSTAIN
EFFECTIVE PARTNERSHIPS
Health care organizations that have been successful in partnering with patients and families
to advance patient- and family-centered care have leaders who understand that their com-
mitment 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 commitment to }}Build leadership commitment to
patient- and family-centered care and serve partnerships.
as role models for engaging in partnerships
}}Serve as role models – walk the talk.
with the individuals and families they serve
across the continuum of care. }}Serve as the executive champion/s for
patient- and family-centered care and for
partnerships with patients and families.
Leaders provide resources and support for }}Establish the infrastructure to support
partnerships with the individuals they serve. partnerships.
}}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,
clinicians, staff, patients, and families to
learn how to partner.
Leaders encourage partnerships as a pathway }}Partner with advisors to develop strategies
to improve health care quality and safety. and tools to prepare patients and families
to become active in ensuring the quality
and safety of care.
}}Involve patient and family advisors
in strengthening the capacity of an
organization to ensure quality and safety.

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 Essential Roles Key Action Steps
Leaders oversee and encourage partnerships }}Partner with patients and families to
with patients and families in strategic change and improve care practices.
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.
Leaders put systems in place to measure the }}Measure the effect of patient- and family-
outcomes of collaborative processes. centered care on key outcomes.
}}Document the efforts and impact of
patient and family advisors.
}}Share outcomes with leaders, clinicians,
staff, patients, families, and community
members.
Leaders recognize that profound }}Affirm the commitment to patient- and
organizational change takes time. family-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.

PART IV: WHERE DO WE STAND? A SELF-ASSESSMENT TOOL

FOR CLINIC ADMINISTRATORS, PROVIDERS, STAFF,
AND PATIENT AND FAMILY LEADERS
An effective action plan for moving forward with patient- and family-centered care and de-
veloping effective partnerships with patients and families is based on a thoughtful assessment
of the degree to which a primary care or ambulatory practice has already incorporated key
principles of this approach to care, and of the areas in which progress remains to be made.
Appendix A, "Partnering with Patients and Families: An Ambulatory Self Assessment," in-
cludes questions that can serve as a springboard. It asks the organization to think about key
areas that impact patient- and family-centered care practices including leadership, patient
and family advisory programs, patient and family participation in care and decision-making,
their access to information, education, and support as well as the education of clinicians,
staff, and trainees of the practice. Ideally, the clinical transformation team, with its patient
and family advisors, completes the assessment and uses the assessment findings to develop an

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action plan. This process can occur in organizations before you have established an advisory
program as a way to learn about the ways advisors could be involved in the practice. Later
as part of an ongoing evaluation of your efforts, provide this survey to other administrative
and clinical leaders, managers, frontline staff, and patient and family advisors to determine
how effectively initial action plans have been in engaging a broader group of stakeholders.

PART V: RECRUITING, SELECTING, PREPARING, AND

SUPPORTING PATIENT AND FAMILY ADVISORS
In many health care settings including primary care and ambulatory practices, leaders are
increasing their efforts to partner with patients and families in policy and program develop-
ment, patient safety, quality improvement, patient experience, health care redesign, profes-
sional education, facility design planning, and research and evaluation. They are asking
patients and families to serve on patient and family advisory councils and on clinical trans-
formation teams and other committees. Effective recruitment and appropriate selection,
preparation, and support of patient and family advisors are key to effective partnerships.

Characteristics of Successful Patient and Family Advisors

A patient or family advisor is an individual or family member who has experienced care in
the ambulatory setting and partners with health care professionals in change and improve-
ment. In identifying patient and family advisors, look for individuals who have demonstrat-
ed an interest in partnering with providers in their care or the care of their family member.
Consider those who have offered constructive ideas for change and who have a special ability
to help staff and clinicians better understand the patient or family perspective.
Seek individuals who have the following skills, qualities, and interests:
}}The ability to share personal experiences in ways that others can
learn from them.
}}The ability to see the “big” picture.
}} Interested in more than one agenda issue.
}} Demonstrated commitment to partnership and collaboration.
}}The ability to listen and hear other points of view.
}}The ability to connect with people.
}} Interest in improving health care.
}} A sense of humor.
}} Representativeof the patients, families, and members served by the
ambulatory practice.

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Recruiting Patient and Family Advisors
Before beginning a formal recruitment process, identify some initial, tangible ways to involve
patients and family advisors. Roles and tasks you might consider: serving as members of a
clinical transformation team, a patient and family advisory council, or on a quality improve-
ment committee; serving as members of teams to improve safety or work flow; assisting in the
development of a patient portal, educational materials or programs; planning for renovation
or construction of new facilities; or planning and conducting a research or evaluation project.
Some patient and family advisors may be interested in all of these areas; some may have par-
ticular skills and interests that will be valuable to these collaborative endeavors in addition to
the expertise, perspectives, and experience they bring as patients and family members.
Appendix C includes a sample application form that can be used or adapted for specific
primary care or other ambulatory practices.
To find patient and family advisors with qualities and skills described on page 8:
}} Ask clinicians and other staff for suggestions. Attend a staff or provider
meeting and describe or share a list of the qualities and skills of effective
advisors. Ask that attendees provide recommendations for potential
patient and family advisors.
}} Review letters or emails from patients or families that have provided
constructive feedback to the practice.
}} Include information about patient and family advisors in informational
materials on the clinic’s website, and in patient experience and
satisfaction surveys.
}} Place
notices in clinic/practice publications or in relevant publications or
communication vehicles used by the health system.
}} Post information on Twitter and Facebook.
}} Reach out to patient representatives, ombudsmen, community outreach
workers, and current patient and family advisors.
}} Contact community groups such as the YMCA, Rotary, Kiwanis, fire
departments or other municipal services, and religious organizations
as another way to find individuals who might be interested in serving
as advisors.
}} Connect with peer support groups.
}} Postsigns/brochures on bulletin boards in reception areas, corridors, and
lobbies about the opportunity to be an advisor.
}} Ask patients/families during a clinic visit when appropriate.
Seek individuals from the populations of patients and families your clinic/practice serves.
Recruitment of individuals from diverse ethnic and cultural backgrounds can be most

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effective if you partner with trusted community organizations serving those populations
(e.g., faith communities, social service and public agencies).

Selecting Patient and Family Advisors

Matching patients and families to meaningful advisory opportunities is critical to building an
effective partnership for improvement. Once a patient or family member expresses interest
in being an advisor through completion of an application, having a dialogue about mutual
interests can help both you and the potential advisor in determining if this is a good fit. Some
organizations have a brief meeting with interested applicants, either individually or in a group
setting. Others choose to do a phone screening to gather information from the potential ad-
visor. In either case, time is provided for applicants to ask questions about the organization
as well as for the organization to learn more about the skills, interests, and experiences the
applicant brings to the role. Below are a few questions that can help begin the conversation:
}} Tell me why you are interested in becoming an advisor. What would you
like to accomplish in this role?
}}What would you like to ask me about the advisory roles in our practice?
}} Can you describe a recent health care experience you or a family member
has had? What worked well and what could have been improved to
make it a better experience?
}} Can you describe your experience working in a group to
solve a problem?
More interview questions can be found in Appendix D.

Informing Potential Patient and Family Advisors About Their Roles

Before individuals can make decisions about whether they wish to participate on an advi-
sory council, clinical transformation team, patient safety committee, a quality improvement
team, or in other health care redesign initiatives, they should be informed of the responsi-
bilities and privileges associated with the role. A fact sheet, containing the following infor-
mation, can be prepared and offered to individuals who are being asked to participate:
}} Mission, goals, and priorities of the ambulatory practice.
}} Description,priorities, and goals of the council, team,
committee, or project.
}} Expectations for patient and family advisor participation.
}} Meeting times, frequency, and duration.
}} Expectations
for communication among team members
between meetings.
}} Time commitment beyond meeting times.
}} Reimbursement or compensation offered.

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 }} Benefits of participation (i.e., what are the expected outcomes of
their involvement).
}} Training and support to be provided.

Reimbursement/Compensation
In order to ensure diversity in your advisor pool, consideration about barriers to participation
and costs should be addressed upfront. At a minimum, the organization should offer
reimbursement to patients and families to offset expenses incurred in association with
their work with the clinic/practice (e.g., parking, transportation, child care). In some cases,
an advisor may choose to decline this support. 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 advisor 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
member (often called a “staff liaison”) who has time dedicated to coordinating activities
with advisors.
The orientation for patient and family advisors should include information on the following
if it has not been provided during your recruitment process:
}}The mission, goals, and priorities of the primary care or
ambulatory practice.
}} Patient- and family-centered care.
}} Overview of patient experience, quality, and safety.
}} Specific skills and knowledge needed to be an effective team member
(e.g., quality improvement methodology for those serving on a quality
improvement team).
}} HIPAA and the importance of privacy and confidentiality.
}} Communicating collaboratively:
¶¶ Expressing your perspective so others will listen
¶¶ How to ask tough questions
¶¶ What to do when you don’t agree
¶¶ Listening to, and learning from, the perspectives of others.
¶¶ Thinking beyond your own experience.

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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:
}} Speaking 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.
}}Who’s who in the organization or on the project team and how to
contact team members.
}} How to prepare for a meeting: what to wear, what to do ahead of time,
and what to bring.
}} How meetings are conducted: format, agenda, minutes, roles (e.g.,
secretary, timekeeper).
}} Trainingfor any technologies that will be used (e.g., conference calls,
web-based tools).
SPECIAL TIP: 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,
clinical transformation team, 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 actively encourage participation of the advisor.
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.

PART VI: SELECTING A PARTNERSHIP APPROACH: PATIENT

AND FAMILY ADVISORY COUNCIL OR INTEGRATION
OF ADVISORS INTO EXISTING TEAMS
It is important to thoughtfully consider the different approaches to implementing a patient
and family advisory program. Two common ways to build partnerships for quality and
safety with patients and families in primary care and other ambulatory settings is to start a
Patient and Family Advisory Council or invite patients and families to join the clinical trans-
formation team and other specific improvement committees. Clinics and practices with
more experience in partnering with advisors often use both. However by reviewing your
needs and understanding the pros and cons of each approach can help you decide where
to start. It can be used for self-reflection and as a way to spark discussion among staff and
clinicians before beginning to work with patients and families.

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Below is a summary of each approach and a list of the pros and cons for your consideration.
There is no right or wrong approach. Choose the approach that fits best for your organiza-
tion’s needs and capacity. The goal is to create mutually beneficial partnerships that provide
a way to integrate the patient and family voice into decisions made about your practice’s
programs and services.

Approach Pros Cons

Patient and Family Allows a broad representation Generally is a longer term
Advisory Council (PFAC): of the populations served commitment of 1-2 years for
volunteer advisors
A group representing Provides a mechanism to gain Recruitment and screening
the voices of your input on clinic-wide issues on a process can take a long time
patient population monthly basis
who partner with key
staff and leaders. The Establishes a formal group that Orientation to the organization
majority of members on reports to leadership and is is comprehensive and takes
a PFAC are patients and sponsored by an executive more time
family members. Creates a strong message There is a greater cost and time
to staff and others that factor (meals and staff time)
partnerships with patients
and families is valued by the
organization
Generally, council meets in Sometimes is limited to higher
the evenings to allow both level conversations and not on-
employed and non-working the-ground work
participants an opportunity
to be engaged with those
delivering care
Creates community-wide Some advisors may not work
ambassadors for your clinic well in a group situation
Gives administration an Limited to those who can
opportunity to understand attend at a particular time,
what patients and families think doesn’t allow as much flexibility
about their clinic
Is a mechanism where input The council may not be able
from patients and families can to address all issues brought to
impact many projects them in a timely way
Builds a cadre of people May not give advisors enough
who can reach out to their of a direct, hands-on experience
communities to gather more working through a specific
opinions and ideas change

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Approach Pros Cons
Advisors Integrated into Recruitment is targeted to a Advisors don’t have opportunity
Quality Improvement specific topic/area to participate/influence other
and Other Committees aspects of the clinic operation
Generally these efforts are time Schedule for existing
Some examples: specific and don’t require a committee meetings may not
long-term commitment work for advisors; so may need
}}Invite patients with a
to change the time of the
chronic condition to
group to get advisor input
participate in a clinic
team working on Advisors can choose which Takes time to bring advisors up-
improving educational topics they are most passionate to-date on work already done
materials or programs about to work in partnership
to that population of with clinic staff
patients. Helps match people with their Takes time to educate advisors
specific strengths and expertise on process/scope of project or
}}Invite new patients
any limitations to what can be
to participate in a
changed
“walk-about” to take
pictures and discuss Advisors can work more closely One advisor cannot be the
ways the clinic is with staff on the ground voice of all patients, so it is
welcoming and places important to ensure at least
where the messages two advisors are assigned to a
could be more committee
positive or where way- Orientation is limited to the Takes time to prepare staff
finding is confusing. improvement topic and can be who work on the committee
}}Ask patients and provided with the orientation because if the role of advisors
family members to for other members of the is not clearly understood
identify one change improvement team by the staff, advisors may
that would improve not be effectively integrated
the clinic or their care in meaningful ways as a
experience? Collect committee member
responses and form Advisors are recruited based on
a clinic team with their specific experience and/
advisors to follow-up or chronic condition, so they
on suggestions. are immediately recognized for
their “expertise”

Believe Patient and Family Participation Is Essential

Regardless of the structure for patient and family partnerships, 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 clinic/practice 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 improve 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.

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Involving patients and families as partners and advisors will:
}} Bring important perspectives about the experience of care.
}} Teach how systems really work.
}} Inspire and energize staff.
}} Keep staff grounded in reality.
}} Provide timely feedback and ideas.
}} Lessen the burden on staff to fix the problems... staff don’t have to have
all the answers.
}} Bring connections with the community.
}} Offer an opportunity for patients and families to “give back.”
This material in Part V and VI 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.

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.

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15
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. Retrieved from http://www.ipfcc.org/tools/
downloads.html
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.
Visit IPFCC’s website for additional written and audiovisual resources at www.ipfcc.org.

Additional Resources
American Academy of Family Physicians, American Academy of Pediatrics, American
College of Physicians, & American Osteopathic Association. (2007, February). Joint
principles of the patient centered medical home. Retrieved from http://www.pcpcc.net/
content/joint-principles-patient-centered-medical-home
American Academy of Pediatrics. (2004). Medical home initiatives for children with
special needs [Special Issue]. Pediatrics, 113(Suppl. 4).
Angood, P., Dingman, J., Foley, M. E., Ford, D., Martins, B., O’Regan, P.,…Denham, C.
(2010). Patient and family involvement in contemporary health care. Journal of Patient
Safety, 6(1), 38-42.
Angstman, K. B., Bender, R. O., & Bruce, S. M. (2009). Patient advisory groups
in practice improvement: Sample case presentation with a discussion of best
practices. Journal of Ambulatory Care Management, 32(4), 328-332. doi:10.1097/
JAC.0b013e3181ba6e90
Armstrong, N., Herbert, G., Aveling, E. L., Dixon-Woods, M., & Martin, G. (2013).
Optimizing patient involvement in quality improvement. Health Expectations, 16(3),
e36-47. doi:10.1111/hex.12039
Bitton, A., Ellner, A., Pabo, E., Stout, S., Sugarman, J. R., Sevin, C., . . . Phillips,
R. S. (2014). The Harvard Medical School Academic Innovations Collaborative:
Transforming primary care practice and education. Academic Medicine, 89(9), 1239-
1244. doi:10.1097/ACM.0000000000000410
Bodenheimer, T., Ghorob, A., Willard-Grace, R., & Grumbach, K. (2014). The 10
building blocks of high-performing primary care. Annals of Family Medicine, 12(2),
166-171. doi:10.1370/afm.1616

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Boivin, A., Lehoux, P., Lacombe, R., Burgers, J., & Grol, R. (2014). Involving
patients in setting priorities for healthcare improvement: A cluster randomized trial.
Implementation Science, 9, 24. doi:10.1186/1748-5908-9-24
Caplan, W., Davis, S., Kraft, S., Berkson, S., Gaines, M. E., Schwab, W., & Pandhi, N.
(2014). Engaging patients at the front lines of primary care redesign: Operational
lessons for an effective program. Joint Commission Journal on Quality and Patient Safety,
40(12), 533-540.
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
Carr, E. C., Worswick, L., Wilcock, P. M., Campion-Smith, C., & Hettinga, D. (2012).
Improving services for back pain: Putting the patient at the centre of interprofessional
education. Quality in Primary Care, 20(5), 345-353.
Center for Advancing Health. (2010). A new definition of patient engagement: What is
engagement and why is it important? Washington, DC: Author. Retrieved from http://
www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf
Coulter, A. (2012). Patient engagement – What works? Journal of Ambulatory Care
Management, 35(2), 80-89. doi:10.1097/JAC.0b013e318249e0fd
Dillon, A. D. (2003). Parent partners: Creative forces on medical home improvement teams.
Greenfield, NH: Center for Medical Home Improvement. Retrieved from http://www.
medicalhomeimprovement.org/pdf/CMHI-Parent-Partner-Guide.pdf
Elwyn, G., Lloyd, A., May, C., van der Weijden, T., Stiggelbout, A., Edwards, A.,…
Epstein, R. (2014). Collaborative deliberation: A model for patient care. Patient
Education and Counseling, 97(2), 158-164. doi:10.1016/j.pec.2014.07.027
Fisher, E. B., Hacker, T., McDonough, M., Nielsen, M., & Tang, P. Y. (2015). Peer support
in the patient-centered medical home and primary care: Conference report. American
Academy of Family Physicians Foundation, National Council of La Raza, Patient-
Centered Primary Care Collaborative, and Peers for Progress. Retrieved from https://
www.pcpcc.org/resource/peer-support-patient-centered-medical-home-and-primary-care
Fontaine, P., Whitebird, R., Solberg, L. I., Tillema, J., Smithson, A., & Crabtree, B. F.
(2014). Minnesota’s early experience with medical home implementation: Viewpoints
from the front lines. Journal of General Internal Medicine, 30(7), 899-906. doi:10.1007/
s11606-014-3136-y

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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:
Josiah Macy Jr. Foundation. Retrieved from http://macyfoundation.org/publications/
publication/partnering-with-patients-families-and-communities-to-link-interprofessional
Goldfield, N. (Ed.). (2009). Patient-centered care [Theme issue]. Journal of Ambulatory
Care Management, 32(1).
Han, E., Hudson Scholle, S., Morton, S., Bechtel, C., & Kessler, R. (2013). Survey shows
that fewer than a third of patient-centered medical home practices engage patients in
quality improvement. Health Affairs, 32(2), 368-375. doi:10.1377/hlthaff.2012.1183
Heisler, M. (2006). Building peer support programs to manage chronic conditions: Seven
models for success. Oakland, CA: California HealthCare Foundation. Retrieved from
http://www.chcf.org/publications/2006/12/building-peer-support-programs-to-
manage-chronic-disease-seven-models-for-success
Hibbard, J., & Greene, J. (2013). What the evidence shows about patient activation:
Better health outcomes and care experiences; Fewer data on costs. Health Affairs,
32(2), 207-214.
Hibbard, J., & Minniti, M. (2012). An evidence-based approach to engaging patients.
In D. Nash, J. Clarke, A. Skoufalos, & M. Horowitz (Eds.), Health Care Quality: The
Clinician’s Primer (pp. 245-262). Tampa, FL: American College of Physician Executives.
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. doi:10.1007/s11606-010-1260-x
Horowitz, C. R., Eckhardt, S., Talavera, S., Goytia, C., & Lorig, K. (2011). Effectively
translating diabetes prevention: A successful model in a historically underserved
community. Translational Behavioral Medicine, 1(3), 443-452.
Institute for Healthcare Improvement. (2009, May). Partnering in self-management
support: A toolkit for clinicians. Cambridge, MA: Author. Retrieved from http://
www.improvingchroniccare.org/downloads/selfmanagement_support_toolkit_for_
clinicians_2012_update.pdf
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. Retrieved from http://iom.nationalacademies.org/ Reports/2012/Best-
Care-at-Lower-Cost-The-Path-to-Continuously-Learning-Health-Care-in-America.aspx
Klein, S. (2011). The Veterans Health Administration: Implementing patient-centered
medical homes in the nation’s largest integrated delivery system. New York, NY: The
Commonwealth Fund. Retrieved from http://www.commonwealthfund.org/
publications/case-studies/2011/sep/va-medical-homes

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Langston, T., Pattabiraman, A., & Kaye, P. E. (2012, June). Patient engagement: A
framework for improving health and lowering cost. Washington, DC: Regional Primary
Care Coalition. Retrieved from www.regionalprimarycare.org
Leape, L., Berwick, D., Clancy, C., & Conway, J., Gluck, P., Guest, J…Isaac, T. (2009).
Transforming healthcare: A safety imperative. BMJ’s Quality and Safety in Health Care,
18, 424-428. Retrieved from http://qualitysafety.bmj.com/content/18/6/424.full
Lorig, K. (2001). Patient education: A practical approach (3rd ed.). Thousand Oaks, CA:
Sage Publications.
Lorig, K., Holman, H., Sobel, D., Laurent, D., Gonzalez, V., & Minor, M. (2012). Living
a healthy life with chronic conditions: Self-management of heart disease, arthritis, diabetes,
depression, asthma, bronchitis, emphysema, and other physical and mental health conditions
(4th ed.). Boulder, CO: Bull Publishing.
Marshall, B. C., & Nelson, E. C. (2014). Accelerating implementation of biomedical
research advances: Critical elements of a successful 10 year Cystic Fibrosis Foundation
healthcare delivery improvement initiative. BMJ Quality & Safety, 23(Suppl. 1),
i95-i103. doi:10.1136/bmjqs-2013-002790
McAllister, J. W., Cooley, W. C., Van Cleave, J., Boudreau, A. A., & Kuhlthau, K. (2013).
Medical home transformation in pediatric primary care—What drives change? Annals of
Family Medicine, 11(Suppl. 1), S90-8. doi:10.1370/afm.1528
McMullen, C. K., Schneider, J., Firemark, A., Davis, J., & Spofford, M. (2013).
Cultivating engaged leadership through a learning collaborative: Lessons from primary
care renewal in Oregon safety net clinics. Annals of Family Medicine, 11(Suppl. 1), S34-
40. doi:10.1370/afm.1489
Millenson, M. L., DiGioia, A. M., 3rd, Greenhouse, P. K., & Swieskowski, D. (2013).
Turning patient-centeredness from ideal to real: Lessons from 2 success stories. Journal
Ambulatory of Care Management, 36(4), 319-334. doi:10.1097/JAC.0b013e3182a3e76d
Minniti, M., Abraham, M., & Johnson, B. (2014). Individual and family engagement in
the Medicaid population: Emerging best practices and recommendations. Princeton, NJ:
Robert Wood Johnson Foundation. Retrieved from http://www.ipfcc.org/advance/
topics/medicaid-engagement.html
Morrow, E., Cotterell, P., Robert, G., Grocott, P., & Ross, F. (2013). Mechanisms
can help to use patients’ experiences of chronic disease in research and practice: An
interpretive synthesis. Journal of Clinical Epidemiology, 66(8), 856-864. doi:10.1016/j.
jclinepi.2012.12.019

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Nielsen, M., Langner, B., Zema C, Hacker, T., & Grundy, P. (2012). Benefits of
implementing the primary care patient-centered medical home: Review of cost & quality
results. Retrieved from Patient-Centered Primary Care Collaborative website: https://
www.pcpcc.org/sites/default/files/media/benefits_of_implementing_the_primary_
care_pcmh.pdf
Renedo, A., Marston, C., Spyridonidis, D., & Barlow, J. (2015). Patient and public
involvement in healthcare quality improvement: How organizations can help patients
and professionals to collaborate. Public Management Review, 17(1), 17-34. doi:10.1080/
14719037.2014.881535
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. Retrieved from www.ihi.org
Rissi, J. J., Gelmon, S., Saulino, E., Merrithew, N., Baker, R., & Hatcher, P. (2015).
Building the foundation for health system transformation: Oregon’s Patient-Centered
Primary Care Home program. Journal of Public Heath Management and Practice, 21(1),
34-41. doi:10.1097/PHH.0000000000000083
Roseman, D., Osborne-Stafsnes, J., Amy, C. H., Boslaugh, S., & Slate-Miller, K. (2013).
Early lessons from four ‘Aligning Forces for Quality’ communities bolster the case for
patient-centered care. Health Affairs, 32(2), 232-241. doi:10.1377/hlthaff.2012.1085
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.
Solberg, L. I., Crain, A. L., Tillema, J. O., Fontaine, P. L., Whitebird, R. R., Flottemesch,
T. J.,…Crabtree, B. F. (2014). Challenges of medical home transformation reported by
118 patient-centered medical home (PCMH) leaders. Journal of the American Board of
Family Medicine, 27(4), 449-457. doi: 10.3122/jabfm.2014.04.130303
Stout, S., & Weeg, S. (2014). The practice perspective on transformation: Experience and
learning from the frontlines. Medical Care, 52(11 Suppl. 4), S23-S25. doi:10.1097/
MLR.0000000000000239
Taylor, J., Salem-Schatz, S., Gerrard, M. D., Hardeman, R., & Jim, J. (2009, September).
Integrating best practices into collaborative learning methods for Health Care Home
providers: A summary of findings and recommendations for the Minnesota Departments of
Health and Human Services. Minneapolis, MN: Wilder Research. Retrieved from http://
www.health.state.mn.us/healthreform/homes/background/collaborativelearningeval.pdf
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
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Wynn, J. D., Draffin, E., Jones, A., & Reida, L. (2014). The Vidant Health quality
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INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE
6917 Arlington Road, Suite 309 • Bethesda, MD 20814 • Phone: 301-652-0281 • Fax: 301-652-0186 • www.ipfcc.org

APPENDIX A: PARTNERING WITH PATIENTS AND FAMILIES:

AN AMBULATORY PRACTICE SELF-ASSESSMENT
This assessment can be completed by the clinic transformation team or other group which
includes administrative and clinical leaders, managers, frontline staff, and patient and family
advisors. The group can then discuss responses and develop an action plan.

PRIORITY
FOR CHANGE
YES NO LOW HIGH

Leadership Commitment
Does your practice/clinic have patient- and family-centered £ £ 1 2 3
vision, mission, and philosophy of care statements that
promote partnerships with patients and families?

Does your practice/clinic communicate its patient- and

family-centered vision, mission, and philosophy of
care clearly to:
}} Clinic/practice staff and clinicians? £ £ 1 2 3
}} Patients and families? £ £ 1 2 3
}} Others in the community? £ £ 1 2 3

Do practice/clinic leaders:
}} Create the expectation for partnering with patient and £ £ 1 2 3
family advisors in clinic/practice improvement and
ambulatory redesign?
}}Through their words and actions, hold the following
accountable for collaborating with patients
and families:
¶¶Staff? £ £ 1 2 3
¶¶Clinicians? £ £ 1 2 3

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 PRIORITY
FOR CHANGE
YES NO LOW HIGH

Does your practice/clinic budget time, financial and £ £ 1 2 3

personnel resources in patient- and family-centered initiatives
[e.g., review patient education materials, improve facilities,
quality improvement teams?]

Does your practice/clinic have a Patient and Family £ £ 1 2 3

Advisory Council?

Do patients and families serve on committees and work

groups involved in:
}} Patient/family education? £ £ 1 2 3
}} Careof chronic conditions (e.g., self- £ £ 1 2 3
management support)?
}} Planning the use of group visits? £ £ 1 2 3
}} Transition planning? £ £ 1 2 3
}} Peer-led education and support? £ £ 1 2 3
}} Medical Home implementation/ambulatory £ £ 1 2 3
care redesign?
}} Quality improvement? £ £ 1 2 3
}} Patient safety? £ £ 1 2 3
}} Use of information technology? £ £ 1 2 3
}} Oversight of culturally and linguistically £ £ 1 2 3
appropriate services?
}} Connections with community services and programs? £ £ 1 2 3
}} Staff orientation and education? £ £ 1 2 3
}} Policy and procedure development? £ £ 1 2 3
}} Facility design? £ £ 1 2 3
}} Evaluation and research initiatives? £ £ 1 2 3
}} Other?_______________________________________

Signage and Facility Design

The signage and design of clinic/practice facilities:
}} Createspositive and welcoming impressions £ £ 1 2 3
throughout the facility for patients and families?
}} Displays messages that communicate to patients £ £ 1 2 3
and families that they are essential members of the
health care team?

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 PRIORITY
FOR CHANGE
YES NO LOW HIGH

Patient and Family Participation in Care and

Decision-making
Do staff or clinicians encourage patients to define their £ £ 1 2 3
family or other care partners who will be involved in care and
decision-making?

Are patients and their families, according to patient £ £ 1 2 3

preference, encouraged and supported to participate in their
care planning and decision-making?

Do staff and clinicians view patients and families as essential £ £ 1 2 3

members of the health care team?

Are the cultural and spiritual practices of patients and £ £ 1 2 3

families respected and incorporated into care planning and
decision-making?

Do providers encourage and support patients and £ £ 1 2 3

their families, according to patient preference, to set
goals and create action plans for self-management of
chronic conditions?

Are staff practices consistent with the view that patients and £ £ 1 2 3
families are allies for patient health, safety, and well-being?

Patient and Family Access to Information,

Education, and Support
Are systems in place to ensure that patients and their families £ £ 1 2 3
have access to complete, unbiased, and useful information.

Are there a range of informational and educational programs

and materials provided:
}} In primary languages of the community served? £ £ 1 2 3

}} At appropriate literacy levels? £ £ 1 2 3

}}That include examples and images that reflect the £ £ 1 2 3

diversity of patients and families served by the
practice/clinic?
}} In a variety of formats (e.g., written, £ £ 1 2 3
video, web-based)?

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 PRIORITY
FOR CHANGE
YES NO LOW HIGH

Do patients have easy access to their medical records [paper £ £ 1 2 3

or electronic]?
}} Do patients have access to their clinical notes? £ £ 1 2 3

Are peer-led educational programs available and accessible to £ £ 1 2 3

patients and families?

Education of Staff, Clinicians,

Students, and Trainees
Do clinic/practice orientation and education programs
prepare the following people for collaboration with patients
and families in care and decision-making:
}} Staff? £ £ 1 2 3

}} Clinicians? £ £ 1 2 3

}} Students and Trainees? £ £ 1 2 3

Are patients and families involved as presenters in orientation £ £ 1 2 3

and educational programs?

This tool is available as a Word document on the following websites so that it can be used or
adapted as an interactive or online tool:
}} www.ipfcc.org/advance/topics/primary-care.html
}} www.pcpcc.org

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INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE
6917 Arlington Road, Suite 309 • Bethesda, MD 20814 • Phone: 301-652-0281 • Fax: 301-652-0186 • www.ipfcc.org

APPENDIX B: PARTNERING WITH PATIENTS AND FAMILIES IN

PRIMARY CARE IMPROVEMENT AND REDESIGN:
A WORKSHEET TO SUPPORT PROGRESS
Action Steps Progress Date
1. Appoint a Practice Leader as an Executive Sponsor
for advancing the practice of patient- and family-
centered care and developing meaningful, sustained
partnerships with patients and families.
2. Designate a Staff Liaison to coordinate and support
work with patient and family advisors for the Medical
Home and other initiatives to redesign primary care
and other ambulatory care.
3. Identify at least two patient and family advisors to
serve on the clinical transformation team.
4. Implement a process for key leaders and the
clinical transformation team to learn about patient-
and family-centered care and partnerships with
patients and families in primary care and other
ambulatory care. Participate in webinars, attend
seminars and conferences, create a journal club
to review and discuss articles, and visit websites
such as: www.ipfcc.org, www.pcpcc.org, and
www.healthcarecommunities.org.
5. Assess the extent to which patient- and family-
centered core concepts and strategies are currently
implemented within your primary care or other
ambulatory practice. (A brief initial self-assessment
tool appears in Appendix A.)

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Action Steps Progress Date
6. Identify initial roles for patient and family advisors
who will assist in developing the Medical Home and
redesigning primary care and other ambulatory care.
The following are possibilities:
a. Serve on an advisory council of patients and
families who receive care at the ambulatory
practice with selected staff and clinical leaders.
b. Serve as members of the clinical
transformation team.
c. Serve as members of task forces and work
groups related to facility design, waiting room
activities, registration procedures, clinic flow,
documentation systems, ePHRs, patient safety,
and other quality improvement endeavors.
d. Participate on site visit teams to other programs.
e. Participate in brainstorming sessions before
developing educational materials and throughout
the development process.
f. Assist in adapting patient information materials to
meet the literacy and language needs of patients
served by the practice.
g. Serve on teams to plan, conduct, and evaluate
ambulatory group visits.
h. Lead or co-lead educational and support
programs.
i. Serve in volunteer or staff positions such as clinic
greeter, peer mentor/coach, or peer liaison.
j. Participate in identifying and building relationships
with community programs and resources.
k. Join staff when they meet with funders and
community groups.
l. Present at staff orientation and inservice programs.
m. Offer professionals-in-training or staff the
opportunity to spend a day with them to observe
how patients and families manage their care in
their daily life.
n. Conduct follow-up phone calls with other
patients and/or families after clinic visits to gather
their perspectives on how they experience care.
o. Facilitate or co-facilitate quarterly or semi-annual
coffee hours for other patients, families, staff, and
clinicians to explore ideas for improving care.
p. Participate in creating or revising a patient/family
satisfaction survey and developing strategies to
respond to concerns and problems reported.

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Action Steps Progress Date
q. Facilitate or co-facilitate focus groups of other
patients and families as specific issues arise.
r. Participate in planning, conducting, and
disseminating research and evaluation.
7. Determine the qualities and skills of advisors who will
serve in the roles described above. The following are
possibilities:
a. The ability to share personal experiences in ways
that others can learn from them.
b. The ability to see the ”big” picture.
c. Interested in more than one agenda issue.
d. Demonstrated commitment to partnership and
collaboration.
e. The ability to listen and hear other points of view.
f. The ability to connect with people.
g. Interest in improving health care.
h. A sense of humor.
i. Representative of the patients, families, and
members served by the ambulatory practice.
8. Develop a patient and family advisor recruitment and
selection plan, informational materials for recruitment,
and an application form.
a. Develop an application form (use or adapt the
form in Appendix C) and other recruitment
materials.
b. Develop informational materials for recruiting
patient and family advisors.
cc Mission, goals, and priorities of the ambulatory
practice.
cc Description, priorities, and goals of council,
committee, or project.
cc Expectations for patient and family advisor
participation.
cc Meeting times, frequency, and duration.
cc Expectations for communication between
meetings.
cc Time commitment beyond meeting times.
cc Reimbursement or compensation offered.
cc Benefits of participation (i.e., what are the
expected outcomes of their involvement).
cc Training and support to be provided.

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Action Steps Progress Date
c. Consider the following approaches for
recruitment:
cc Asking staff and clinicians for suggestions.
cc Post signs/brochures on bulletin boards in
reception areas, corridors, and lobbies about
the opportunity to be an advisor.
cc Ask patients/families during a clinic visit when
appropriate.
cc Place notices in the clinic’s or health system’s
publications, websites, information kiosks, and
TV systems.
cc Contact support groups and community
organizations such as Rotary, Kiwanis, fire
departments, and religious organizations.
cc Ask current patient and family advisors for the
clinic, affiliated hospital, or health system.
cc Call or send a mailing to patients and families
served by the practice.
cc Post information on Twitter and Facebook.
d. Plan the selection process, especially who will
interview patient and family advisors and the
criteria for selection.
9. Provide an orientation program for patient and
family advisors and prepare them for serving on
improvement and practice transformation initiatives.
a. The mission, goals, and priorities of the primary
care or ambulatory practice.
b. Patient- and family-centered care.
c. Overview of patient experience, quality, and
safety issues and strategies.
d. Specific skills and knowledge needed to
be an effective team member (e.g., quality
improvement methodology for those serving on
a quality improvement team).
e. HIPAA and the importance of privacy and
confidentiality.

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Action Steps Progress Date
f. Communicating 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.
g. Who’s who in the organization or on the project
team and how to contact team members.
h. How to prepare for a meeting: what to wear,
what to do ahead of time, and what to bring.
i. How meetings are conducted: format, agenda,
minutes, roles (e.g., secretary, timekeeper).
j. Training for any technologies that will be used
(e.g., conference calls, web-based tools).
10. Provide education and support for administrative
leaders, clinicians, and staff for collaborating with
patient and family advisors. Address such issues as:
a. How to encourage collaborative discussions.
b. The importance of listening.
c. Effective approaches to meeting facilitation.
d. Acting on advisors’ observations and
recommendations when appropriate and
providing information when not implemented.
e. Being open to questions and challenges.
f. Responding/explaining without being defensive.
11. Plan and facilitate initial working meetings with
patient and family advisors.
12. On the basis of the self-assessment, partner
with patient and family advisors to set priorities
and develop an action plan for changes and
improvements to advance the practice of patient- and
family-centered care.
13. Track changes and new initiatives. Document results.
14. Evaluate processes, measure the outcomes and impact
of collaborative endeavors, continue to advance
patient- and family-centered practice, and celebrate
and recognize success.

This tool is available as a Word document on the following websites so that it can be used or
adapted as an interactive or online tool:
}} www.ipfcc.org/advance/topics/primary-care.html
}} www.pcpcc.org

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INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE
6917 Arlington Road, Suite 309 • Bethesda, MD 20814 • Phone: 301-652-0281 • Fax: 301-652-0186 • www.ipfcc.org

APPENDIX C: PATIENT AND FAMILY ADVISORS IN AMBULATORY

CARE: SAMPLE APPLICATION FORM
(Please Print)
Name:__________________________________________________________________
Address:_________________________________________________________________
City:____________________________ State:________ Zip Code:__________________
Home Phone: (______ )_____________________________________________________
Cell Phone: (______ )_____________________________________________________
Work Phone: (______ )___________________________________________________
Email Address:____________________________________________________________
What is the best way to contact you? (Circle One) Home Cell Work Email
Will you allow your contact information to be shared with other advisory council/
committee members?  Yes  No
Language(s) You Speak____________________________________________________

(Please check the following boxes as appropriate)

 I am a patient  I am a family member of a patient
Location(s) where you/your family receive primary or ambulatory care:_________________
_______________________________________________________________________
FF I am a patient with a chronic health condition (e.g., diabetes, heart failure,
asthma, depression, arthritis).
FF I help a family member or friend in managing a chronic health condition.

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Why would you like to serve as an advisor?

What issues regarding health and health care are of special interest to you?

Please specify times when you are able to attend meetings:

 Daytime:_____________  Evening:____________  Weekend:_______________
Do you know of other individuals and families who have experienced care at___________
__________________________________ who might be interested in serving as advisors?
 Yes  No
Please call them for us or list name(s) and phone number(s) below:
_____________________________________________________________________
_____________________________________________________________________
Please return form to:

This tool is available as a Word document on the following websites so that it can be used or
adapted as an interactive or online tool:
}} www.ipfcc.org/advance/topics/primary-care.html
}} www.pcpcc.org

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INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE
6917 Arlington Road, Suite 309 • Bethesda, MD 20814 • Phone: 301-652-0281 • Fax: 301-652-0186 • www.ipfcc.org

APPENDIX D: SUGGESTIONS FOR INTERVIEW QUESTIONS IN

SELECTING PATIENT AND FAMILY ADVISORS
}} Please briefly tell us about you and your family.
}}What types of health care services have you used?
}}What positive experiences with health care have you had? (This would
be an experience where you and your family felt respected or supported,
where you had the information you needed and wanted, or where you
and your family could participate in your health care decisions in ways
that you wanted.)
}} Have you had an experience that was not so helpful?
¶¶ How it could have been changed or improved?
}} Ifyou had a magic wand, and could change/improve health care for you
and your family and others in the community, what changes would you
want to make?
}} Have you served on a committee at work, or in the community as a
volunteer? Please share some of those experiences and what you learned
about working in groups.
}} Please share with us strengths you have that would be useful in working
with a group.
}} Do you find it easy to share your opinion with a group of others? What
if you have a different opinion than most of the group? What do you do
in that situation?
}}Would you be interested in presenting your story about your health
care experiences to others to highlight what was helpful and what could
be improved?
}} Discuss various opportunities for patient/family advisor participation
and elicit the potential advisor's interests and preferences:
¶¶ Sharing your opinion and respond to survey questions over
the telephone.
¶¶ Providing feedback on a specific issue in a group format.

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 ¶¶ Serving as an e-advisor.
¶¶ Serving as a member of the clinical transformation team.
¶¶ Serving as a member of a committee (e.g., working with staff to
make specific improvements).
¶¶ Sharing stories of your health care experiences with staff, clinicians,
or trainees or other patients and families (e.g., for staff orientation,
education for trainees, patient educational session).
¶¶ Being a member of a patient and family advisory council (monthly
evening meetings)
¶¶ Discuss issues related to timing and location of meetings, language
and transportation assistance, mobility accommodations,
dietary requirements.
Adapted from Essential Allies: Patient, Resident, and Family Advisors: A Guide for Staff Liaisons.
Many organizations contributed questions and were acknowledged in Essential Allies.

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