Patient and Family Engagement
Recruiting for Patient Family Advisory Councils and
a Review of Patient and Provider Engagement Tools
January 8, 2014
Avoid Readmissions Through
Collaboration
The collaborative is supported by
Cynosure Health and the California
Quality Collaborative (CQC), leading
improvement experts in California, and
is generously funded by the Gordon
and Betty Moore Foundation.
Overview
• Goal
– Reduce 30 and 90 day all cause readmissions by 30% by the end of
2013. (30/30/2013)
• Successes
– >4000 readmissions prevented and > 39 million dollars saved
– ARC 2
• Strategies
– Building a collaborative community with a shared goal
– Sharing evidence-based transitions of care models and
implementation practices
• In-person learning sessions and webinars
– On-site technical assistance
– Data collection and monitoring
www.avoidreadmissions.com
ARC 2 Participating Hospitals
San Francisco Bay Area
Beyond the Bay
Alameda County Medical Center
Alta Bates Medical Center
California Pacific Medical Center
Chinese Hospital
Eden Medical Center
El Camino Hospital
Marin General Hospital
Mills Peninsula Hospital
O'Connor Hospital
Saint Francis Memorial Hospital
San Francisco General Hospital Medical Center
Santa Clara Valley Medical Center
Sequoia Hospital
Seton Medical Center
Stanford Hospital
St. Mary’s Medical Center
St. Rose Hospital
UCSF Medical Center
VA Medical Center San Francisco
VA Palo Alto Health Care System
ValleyCare Health System
Washington Hospital Healthcare System
Lodi Memorial Hospital
Saint Francis, Lynwood
Saint Vincent Hospital
Sutter Delta Medical Center
Speakers
Libby Hoy, Founder/CEO
Patient & Family Centered Care Partners
Julia Hallisy, DDS, Founder and President
The Empowered Patient Coalition
®
Engaging Patients & Families
from the Bedside to the
Boardroom
Libby Hoy,
Patient & Family Advisor
Founder, PFCC Partners
Copyright 2013, Patient & Family Centered Care
Partners, Inc. ® All rights reserved
Our Story
Fear
Shame
Disrespect
Failure
But it is also a story of….
Partnership
Respect
Collaboration
Compassion
Empowerment
My mission
To share our experiences in
partnership and true
collaboration so that together
we can improve healthcare for
all of us.
Patient & Family Centered Care
Partners
PFCC Partners is committed to building a community of healthcare
providers, administrators, ancillary staff, patients and families coming
together to define best practices, share resources, connect with peers
and access support and tools for integrating PFCC into their
organizations.
PFCC Partners recognizes that the quality of healthcare outcomes is
improved when the expertise of the healthcare providers is partnered
with the experience of the patients and families. From the bedside to
the boardroom, patient & family centered care is about partnering to
design policies, programs and individual care plans for the best
possible outcomes.
Why Do We Engage Patients &
Families?
Patient & Family Advisor
Patient & family advisors serve in a variety of
healthcare settings sharing their personal stories
to represent all patients & families in providing an
educated perspective of care by bringing
authenticity, empowerment, respect and
inspiration to the design and delivery of
healthcare systems. Patient & Family Advisor roles
include partner, educator, speaker, listener,
advocate, collaborator and leader, ensuring the
focus of healthcare is centered on the patient &
the family.
Collaboratively written by Patient Family Advisors
assembled by the IHI at the 2012 IHI Forum, Orlando FL
Setting the Table for Success
•Direct tie to strategic plan of the organization
•Senior leadership at the table
•PFAC is reflective of the population the organization serves
•Managers must be on board
•Culture of Continuous Improvement
•Implied Importance
•Recognize Patients & Family members as a resource
• Top Down Buy In
•
-Philosophically
•
-Programmatically
•
-Financially
•Dedicated Staff Resources
5 Gateways
• Setting the Table in the Organization
• Recruiting Patient & Family Advisors
• Training & Orientation of Patient & Family
Advisors
• First Meetings
• Sustainability Practices
FAQ’s
What is the right number of PFA’s?
No perfect number, though majority +/- 12
Can staff serve in the role of PFA’s?
Not recommended, PFA’s are in the room with a singular
purpose
How many staff members serve on PFAC’s
Recommend 30% of total, including leadership no more then
50%
Should PFA’s go through Volunteer Orientation?
Ultimately, YES
What about confidentiality?
Patients who complete applications are sharing their
experiences voluntarily. PFA’s should sign confidentiality
agreement with the organization.
What Does Success Look Like?
• PFA’s receive training specific to the role
• PFAC agendas are created in partnership
• PFA’s are seamless in the fabric of the organization, rather then
‘heros’ or revered guests
• Every program, policy & design process involves PFA’s from the
outset
• Every staff person in the organization recognizes the value of PFAC
& supports it’s activities
• Senior leaders support the sustainability of the PFAC and recognize
it as a critical component for Improvement efforts
• Robust structure for PFAC integration
Strategies for Partnering
• Open ended questions to clarify families’ understanding
•Provide choices
•Provide unbiased information
•Use interpreters
•Use simple language
•Patience
•Sit down, slow down as much as possible
•Assess the patient and families understanding of
the current medical condition
•Offer family comforts and resources
•TALK about your concerns
•Empower & guide the patient & families in their
desire for information and knowledge
The Teach Back Method
http://www.nchealthliteracy.org/toolkit/tool5.pdf
What Does Success Look Like?
Calm
Confidant
Comfortable
Copyright 2013 PFCC Partners, Inc. ®
Contact
www.pfccpartners.com
Libby@pfccpartners.com
5199 E. Pacific Coast Hwy, Suite 306
Long Beach CA 90804
562.961.1100
®
The Empowered Patient Coalition
Engaging and Empowering
Patients, Families,
and Providers
Presented by
Dr. Julia Hallisy
Founder and President
The Empowered Patient Coalition
© 2014
About Us
A consumer and advocateled non-profit organization
that works to inform,
engage, and empower
patients, family members,
caregivers, and providers.
About Julia Hallisy:
Mother, Wife, Dentist, Author, Patient
Advocate, Former Hospital Volunteer
Our website is optimized
for mobile devices
My Inspiration
Katherine “Kate” Hallisy 1989-2000
Life-Threatening Illness & Hospital Infection
 Cancer diagnosis, chemotherapy, radiation, loss of right eye
 Several years later, a 30-minute biopsy for recurrent lesion in leg
 48 hours later – rash, fever, lethargy, kidney failure
 PICU on life support for 7 weeks with sepsis, ARDS
 C-diff, bed sore, ICU psychosis, PTSD
 Permanent heart and lung damage
 Delay in limb-sparing surgery = above-the-knee amputation
 Post-amputation wound infection and severe phantom pain
 Months of physical therapy
 Financial cost = $396,000 in 1997 dollars
Steps to Patient Engagement
Establish Why Patients Should Care about Engaging
Model Effective Communication by Patients & Providers
Provide Tools to Inform, Engage, and Even Inspire
Measure Effectiveness and Share Successes
Ongoing Support, Follow-up, & Momentum
© 2014
Coordinated Care Involves Engaging Patients & Families
Many patients do not want to be passive recipients
Patients now expect to be participants*
Patient expectations are increasing faster than provider usage of
educational materials and technology
Now is the time to move forward on patient educational materials,
tools, resources, and support. Please do not let the lack of a formal
patient advisory council delay your progress!
*Accenture Consumer Survey on Patient Engagement – December, 2013
© 2014
Making Engagement a Reality
 Educational tools in many forms – ask patients if they have a




preference.
Patients may not know which form they prefer until they see
them and use them.
Establish a patient library, resource area, or educational portal as
the “go-to” place for patients and providers.
Innovative collaboration between advocates and providers and
continuation of ARC successes.
Pilot studies to assess patient resources. Please partner with us
in this area. We are here to help!
© 2014
What We Do – Tools, Resources, and Support
© 2013
Empowered Patient Apps
© 2014
Challenges– Communication, Speaking Up,
and Being Prepared
 Patients struggle to ask any questions at all
 Patients are not focused, organized, or concise
 Patients may have a long list of vague complaints
 Patients ask the “wrong” kind of questions
 Patients worry about being labeled “difficult”
 Patients bring up concerns at the very end of the visit
Source: Consumer Reports
© 2013
A Solution -Empowered Patient® SBAR Forms
Communication tools to help patients organize their
thoughts, observations, and questions. Script the behavior you are seeking!
Easy to use
Patients acquire skills
Builds confidence
Organized and concise
Saves time
Reduces stress
Improves communication
© 2013
A Solution- Preparing for Visits
 Stress the importance and
value of being prepared for
visits.
 Ask patients to use a
structured form including
three main questions.
 Use wait times to complete
as much of the form as the
patient wants.
© 2012
A Solution - Engaging Patients in the Hospital
 Patient and family rounds
 Use of whiteboards
 Patient advisory councils,
committees, and board
memberships
 Offer a written or electronic
patient journal
 Encourage the use of a patient
progress sheet
© 2012
A Solution – Interactive Visit Summaries
Inform patients that it is
helpful to write down
questions and goals
 Patient goals are listed on
the visit summary
 Start with one or two
simple, achievable, and
measurable goals
 Consider having patients fill
in parts (or all!) of the visit
summary

© 2013
Empowered Patient Decision Support App
1. I feel I have the basic facts I need to make this decision:
Yes 
 I know if my diagnosis is confirmed
 I know the average length of treatment and recovery time
 I know if having this treatment may prevent me from having other treatments later
No 
 I need more time/information from my doctor or nurse
 I want a second opinion/information from a different doctor or nurse
 I need help understanding and learning about my condition
 I want to look up standard tests and treatments
 I want to know about the success rate of the suggested treatment
 I want to talk to other patients who have what I have (online communities, in- person support
groups, or other patients suggested by my providers)
©2012
Helping Patients Change Their Role
Patients often need permission and role modeling from their
providers to begin to participate in meaningful ways
Be clear about the goal- “We are going to be sure you feel comfortable speaking
to your care team.”
Refer to patients as team members – involved, empowered, valued
Appeal to altruism – “help us improve health care for everyone”
Have expectations that patients communicate clearly and prepare for visits and
hospitalization and provide tools
Use wait times for patients who are not prepared in advance to set their agenda
Give “information and action prescriptions” and follow-up at next visit
Script your critical moves!
© 2014
Challenge – Discharge, Home Care,
and Preventing Readmissions
 A clear goal – we want you to heal well and not come back to the hospital
 Explain that discharge is a transition – and it can be challenging work
 Discharge instructions, discharge summary, medication lists and reconciliation
 Who will be helping at home? Assess their health, skill, and availability
 Complications to watch for and a phone number to call
 Teach patients to recognize signs of wound or SSI and what action to take
 Improving the healing environment – nutrition, stress, sleep, support…
 Patients know when to return for visits, which doctor to see, appointment is
scheduled, confirmed, and there is follow-up
 Home visit or calls
 Investigate volunteer options – California Pacific HELP program is an example!
A Solution – Discharge and Home Care
Checklists and Fact Sheets
© 2013
Focus on a strong beginning and a strong finish
and just get going
Decide on an initial focus and direction – what problem
needs solving in your institution? Where are patients and
staff struggling?
2. Choose one or two tools to pilot as a first step, choose a
department and champions to help implement and
measure.
3. Baby steps are a good start but should be bigger and
bolder each time.
1.
Meeting resistance is often
the result of not having a clear
starting point and goal
© 2014
Use Creates Impact!
We want to help California hospitals create impact by:
Assisting you in choosing one or two simple and measurable tools
Helping you pilot innovative tools to inform and engage patients
Working with your institution to be a leader in patient engagement
Moving beyond discussion and policy and actually taking steps to
achieve front-lines patient engagement
© 2014
Things Can Be Different
Patients have skills and confidence to be part of the team
Patients communicate effectively with SBAR scripts and coaching
Patients prepare for visits in advance and help with visit summaries
Patient and family involved in the daily hospital care plan
Patients engage and self-manage as true partners
What Would Katherine Say?
 We are at a fork in the road
 There is no middle ground
 People are suffering and dying
 We can, and must, do more
 Why is it taking so long?
 You can make it better
 Take the first step!
Informing Patients
Building Partnerships
• Free Hospital Guide
• Factsheets and Checklists
• Free Patient Journal
• Apps
• Patient Safety Training
• Sign up for our Newsletter
www.EmpoweredPatientCoalition.org
Contact
Julia@EmpoweredPatientCoalition.org
Tel. 415-681-1011
Twitter@EPCoalition
Facebook –The Empowered Patient Coalition
LinkedIn – Julia Hallisy
www.EmpoweredPatientCoalition.org