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Introduction to Health Care
Homes Webinar Series
Session 2:
Patient- and Family-Centered Care
Patient and Family-Centered Care:
Collaborating with Consumers and Families
Carolyn Allshouse
Executive Director
Family Voices of Minnesota
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Objectives for today
• Understand the history of patient-and-familycentered care
• Understand what patients and families can
contribute to improving the quality of health
care
• Learn tips and tools for incorporating patient
and family-centered care into your
clinic/health care system.
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Family Voices of MN
• Family Voices mission is to achieve patient-andfamily-centered care for all children, youth and
young adults with special health care needs
and/or disabilities.
• Through our state and national networks we
provide information, tools and supports that:
– Assist patients and families in navigating systems of
care
– Assist in the implementation of patient-and-familycentered practices in the health care system
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Health Care Home (Medical Home)
• Based on the 2008 Minnesota health reform law,
medical homes are called health care homes.
• A medical home is a community-based primary
care setting which provides and coordinates high
quality, planned, patient and family-centered
health promotion, acute illness care and chronic
condition management.
The Center for Medical Home Improvement -2008
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Patient and Family-Centered Care
• An approach to the planning, delivery, and
evaluation of health care that is grounded in
mutually beneficial partnerships among health
care providers, patients, and families
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Much more than patient satisfaction
• Patient and family-centered care incorporates
the expertise and experience of patients and
families into individual care and into the
design, implementation and evaluation of
health system programs and policies.
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The Journey of PFCC
1962 The rights of consumers of health care and other human
service systems — the rights to safety, to be informed, to
choose, and to be heard — were outlined by President
Kennedy in an address to Congress.
1965
Head Start, created to address the educational and support
needs of children, especially those living in poverty and those
with special needs. Legislation mandated parent participation
and parent control of local programs.
1975
The Education for All Handicapped Children Act (P.L. 94-142)—
IEP’s developed with the family. First Parent Training and
Information Centers (PTIs) funded.
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The Journey of PFCC - 1984
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1987
Surgeon General C. Everett Koop
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Laying the Groundwork for Change…
Institute of Medicine
1999
2001
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American Academy of Pediatrics
2001 and 2008
“Family-Centered Home Care,” a
chapter developed by the Institute for
Family-Centered Care and co-authored
by a parent of children with special
needs.
2003
Policy statement on Family-Centered
care published in Pediatrics.
2007
A Parent Advisory Group established for
AAP Home Care Section.
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Patient- and family-centered care
provides the framework and
strategies for improving quality,
safety, and the experience of care.
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Patient- and Family-Centered
Principles
• People are treated with respect and dignity.
• Health care providers communicate and share complete and
unbiased information with patients and families in ways that are
affirming and useful.
• Individuals and families build on their strengths through
participation in experiences that enhance control and
independence.
• Collaboration among patients, families, and providers occurs in
policy and program development and professional education, as
well as in the delivery of care.
Institute for Patient-and-Family-Centered Care
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PFCC is NOT the Fluff of Health Care
Family-centered care is not just "being nice”.
It is a direct and intentional effort to unequivocally
communicate to patients that they are viewed as
distinct and valuable individuals with a family and
place in the community.
The Institute for Family-Centered Care
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A Checklist for Attitudes
From the Institute for Family-Centered
Care
Do I believe?
• That patients and their family members bring
unique expertise to our relationship?
• In the importance of patient and family
participation in decision making at the program
and policy level?
• That patient and family perspectives and opinions
are as important as professional?
• That patients and families bring a critical element
to the team that no one else can provide?
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What Patients Should Expect From Their Health Care:
The Institute of Medicine “Crossing the Quality Chasm”,
2001
1.
Beyond patient visits: You will have the care you need when you need
it...whenever you need it. You will find help in many forms, not just in
face-to-face visits. You will find help on the Internet, on the telephone,
from many sources, by many routes, in the form you want it.
2.
Individualization: You will be known and respected as an individual. Your
choices and preferences will be sought and honored. The usual system of
care will meet most of your needs. When your needs are special, the
care will adapt to meet you on your own terms.
3.
Control: The care system will take control only if and when you freely give
permission.
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What Patients Should Expect From Their Health Care
(Cont’d 1)
4.
Information: You can know what you wish to know, when you wish to know
it. Your medical record is yours to keep, to read, and to understand. The rule
is: “Nothing about you without you.”
5.
Science: You will have care based on the best available scientific knowledge.
The system promises you excellence as its standard. Your care will not vary
illogically from doctor to doctor or from place to place. The system will
promise you all the care that can help you, and will help you avoid care that
cannot help you.
6.
Safety: Errors in care will not harm you. You will be safe in the care system.
7.
Transparency: Your care will be confidential, but the care system will not
keep secrets from you. You can know whatever you wish to know about the
care that affects you and your loved ones.
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What Patients Should Expect From Their Health Care
(cont’d 2)
8.
Anticipation: Your care will anticipate your needs and will help you find
the help you need. You will experience proactive help, not just reactions,
to help you restore and maintain your health.
9.
Value: care will not waste your time or money. You will benefit from
constant innovations, which will increase the value of care to you.
10. Cooperation: Those who provide care will cooperate and coordinate
their work fully with each other and with you. The walls between
professions and institutions will crumble, so that your experiences will
become seamless. You will never feel lost.
Crossing the Quality Chasm: A New Health Care System for the 21st Century
Institute of Medicine
March 2001
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A High Quality Health Care Home
(Medical Home)
• Knows its patients
• Partners with and learns from youth and families
• Uses a team approach to chronic condition care which
includes:
– Planned, proactive visits
– Coordination of services
– Co-management with families and specialists
• Assistance with transitions
• Connections with community organizations, and
• Is satisfying for patients, families, providers and clinic staff
Center for Medical Home Improvement
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2007 consensus statement on Medical
Home
by ACP, AAFP, AOA, and AAP
The Patient-Centered Medical Home is an approach to
providing comprehensive primary care for children,
youth and adults… that facilitates partnerships
between individual patients, their personal physicians
and when appropriate the patient’s family … and
includes patients and families participating in quality
improvement at the practice level…
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Quote
“You will never develop true
patient- and family-centered care
by using patients and families
merely as focus groups”.
Lawrence Schulman, M.D.
Physician-in-Chief
Dana-Farber Cancer Center
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A Checklist for Attitudes
From the Institute for Family-Centered
Care
Do I:
• Consistently let other know that I value the
insights of patients and families?
• Listen respectfully to the opinions of patients
and their family members?
• Believe that patients and families can look
beyond their own experiences?
• Feel comfortable delegating responsibility to
patients and families?
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Patients and families are resources to:
– Evaluate systems and services
– Suggest creative ideas for improvements
– Explain how services really work
– Help professionals understand other systems
– Energize and support health professionals
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Selecting Patients and Families to Serve
on Committees
•
•
•
•
•
•
Institute for Patient-and-Family-Centered
Care
Look for patients and families with different diagnoses and
who have had different and ongoing experiences in the
health care system
Are interested in the topic
Are comfortable speaking in a group
Able to use their personal experience constructively; and
Able to listen and hear differing opinions
Have patients and families as 1/3 to ½ of the committee
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The Walk-About
• One way to begin working with patients and
families in planning for improvement is to
explore your primary care setting through the
eyes of patients and their families.
• The “walk-about” activity can be a fun, nonthreatening way to begin to work with patient
and family advisors and develop an
appreciation for and level of comfort with the
collaborative process.
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The Walk-About con’t
• The “walk-about” can also be beneficial for
patient and family advisors and potential
advisors. It builds their understanding of staff
and physician perspectives, care processes,
and the clinic system.
• It allows them to begin to get a broader view
of the positive elements of the system of care
as well as areas for improvement.
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Advice from Experienced Teams
• Create an atmosphere and promote attitudes
that support patient-and-family-centered
care.
• Patients/parents often do not know how the
clinic works from the inside – don’t be afraid
to share with them how things work – it will
be important for them to understand.
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Advice from Experienced Teams con’t
• Have a set meeting time – look for times
convenient for consumers/families
– Lunch hour
– End of day – after work
•
•
•
•
Use an agenda
Take and keep meeting minutes
Keep a notebook history of the teams work
Take time to inform and educate your
consumer/family partners
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Ways to Keep Consumers/Families
Engaged
• Email meeting reminders.
• Email upcoming agenda, always ask if they have
any additions.
• Share team responsibilities:
– Agenda setting, meeting minutes, chairing the
meeting, etc.
– Testing changes before they are implemented
– Identifying improvements and suggesting possible
solutions to test
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Allow Everyone to Learn About
Consumer/Family Experiences
• On a regular basis quality improvement
committees that include consumers/families
should review patient satisfaction surveys and
other mechanisms used to gather feedback
from consumers and families.
• Focus groups can assist everyone in learning
about specific issues, but do not replace
having consumers on the committee.
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Tools For Bringing Out
Consumer/Family Experiences
• Consumers/families may be reticent to share
negative experiences, they value their providers
and do not want to risk hurting their
relationships. Help them learn to share both
positive and negative experiences in a way that
promotes learning.
– What made a specific experience positive?
– How could the positive experience be replicated in
other areas of the clinic?
– If there was a negative experience what would have
been more helpful? And why?
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Teams Change……
• Over time teams will change, when new
members join:
– Look at new members as a chance to bring in new
ideas, expertise and experiences
– Teach new members the basics, have an orientation
for new members
– Have a mentor for new team members
– Encourage questions before and after meetings
– Have an experienced facilitator who solicits
information from all team members
– Have meeting ground rules
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What is a patient-centered organization
At truly patient-centered organizations, patient and family
input and engagement are both welcomed and sought out
as an integral part of the operations and culture.
In such organizations patients and families participate on
improvement committees, on board committees, in
patient and family advisory groups and in other ways to
ensure that patients play an active role in all decisions
related to improvement.
Maureen Bisognano, President and CEO
Institute for Healthcare Improvement
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Resources
– www.medicalhomeimprovement.org/
– www.IPFCC.org
– www.FamilyVoicesofMinnesota.org
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Contact Information
Carolyn Allshouse
Family Voices of Minnesota
[email protected]
612-210-5547
1-866-334-8444
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Questions?