Transcript No Slide Title

Training of Quality Leaders
Pre-Work Webinar: Consumer Involvement
Why are patient involved?
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History of PLWHA Involvement
History of Involvement
• Fingerprints – The Denver Principles; Authors and
Souls
• Blueprints – The Ryan White Program; Drafters and
Supporters
• Nuts and Bolts – Community Planning Members
• Betterment – Quality Improvement Advocates
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1983 THE DENVER PRINCIPLES
We condemn attempts to label us as “victims,” a term which
implies defeat, and we are only occasionally “patients,” a term
which implies passivity, helplessness, and dependence upon the
care of others.
We are “People With AIDS.”
~ Statement from the Advisory Committee of
People with AIDS (Second National AIDS
Forum, Denver, CO, 1983)
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Methods of Involvement
• Agitation
• Activism
• Advocacy
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Definitions
• Agitator – 1663
 One who stirs up public feeling on controversial issues
 Synonyms: exciter, incendiary, inciter, instigator, rabble-rouser
• Activism – 1915
 A doctrine or practice that emphasizes direct vigorous
action especially in support of or opposition to one side of a
controversial issue
• Advocate – 14th Century
 One that pleads the cause of another; specifically: one that pleads
the cause of another before a tribunal or judicial court
 One that defends or maintains a cause or proposal
 One that supports or promotes the interests of another
http://www.merriam-webster.com accessed on 03/18/13
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Patient Activation and Involvement
Patient Activation
“A fundamental belief underlying efforts to reshape health care
institutions and systems is that patients who are activated to
participate in their own health care are more likely to adopt
healthy behaviors leading to improved health outcomes.”
(van Korff et al. 1997; Bodenheimer et al. 2002a, b’ Mosen et al. 2007)
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Patient Activation Measure
http://www.insigniahealth.com/solutions/patient-activation-measure n.b. this is a proprietary measure
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NQC Consumer Advisory Committee
Consumer Advocacy
CI in
QM / QI
Raise
Awareness
Evaluate
Effectiveness
Provide
Training To
Build
Capacity
Provide
Routine
Input
Formalize
Input
Patient-Centered Care
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Patient
Self Management
Continuum of Engagement
Involvement
Partnership and Shared
Leadership
Direct Care
Patients receive information
about a diagnosis
Patients are asked about
their preferences in
treatment plans
Treatment decisions are
made based on patients’
preferences, medical
evidences, and clinical
judgment
Organizational
Design and
Governance
Organization surveys
patients about their care
experiences
Hospital involves patients as
advisors or advisory council
members
Patients co-lead hospital
safety and improvement
committees
Policy Making
Public agency conducts
focus groups with patients
to ask opinions about health
care issue
Patients’ recommendations
about research priorities are
used by public agency to
make funding decisions
Patients have equal
representation on agency
committee that makes
decisions about how to allocate
resources to health programs
Levels of Engagement
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Consultation
Factors Influencing Engagement:
Source:
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A Multi-Dimensional Framework For Patient and
Family Engagement in Health and Healthcare
Carmen K L et al. Health Aff 2013; 32:22
Patient (Belief’s about Patient Role, Health Literacy, Education)
Organization (Policies and Practices, Culture)
Society (Social Norms, Regulations, Policy)
Dimensions of PLWHA Involvement in Quality
Dimensions of PLWHA Involvement in Quality
Dimensions
Routinely solicit PLWHA input from “broadest” recipients
receiving HIV PC services
Ensure discussions about “quality” are included during all CAB
meetings
Formalize active PLWHA involvement on internal QM teams and
support them in the process
Routinely inform PLWHA of evolving QI activities via multiple
communication venues/mediums
Annually assess programmatic level of PLWHA involvement throughout
the HIV program
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Dimensions of PLWHA Involvement
• Routinely solicit PLWHA input from “broadest”
recipients receiving HIV primary care services
 Conduct satisfaction surveys, focus groups, or patient interviews to
gather ideas for improvement from the consumer perspective
 Clearly define and prioritize ideas for improvement and share with
staff for feedback
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Dimensions of PLWHA Involvement
• Ensure that discussions about “Quality” are included
during all CAB meetings
 When appropriate, form a CAB and engage in planning discussions
about QI goals/objectives/activities, methods used for data
collection, performance measures and areas identified that need to be
improved
 Routinely present HIV clinical performance data results to
consumers and explain/discuss routine data reports with to solicit
PLWHA recommendations when planning (ex: PDSA cycles,
fishbone diagrams, etc.) next steps
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Dimensions of PLWHA Involvement
• Formalize active PLWHA involvement on internal QM
teams and support them in this process
 Nominate and appoint appropriate consumers as equal members on
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QI teams to identify and improve aspects of HIV care
Develop skills-building and training opportunities for consumers so
they can fully participate in agency-wide HIV QM committees and
QI teams
Build further understanding among HIV staff about the benefits of
engaging consumers in QI activities
Discuss key findings during QM team meetings
Link QI activities of the HIV QM team to CAC discussions
Dimensions of PLWHA Involvement
• Routinely inform PLWHA of evolving QI activities via
multiple communication venues/medium
 Openly share the results of QI activities, including performance data
results and updates from quality improvement projects, with all
patients via displays in the waiting room, storyboards, or newsletters
 Inform consumers about facility-wide QI activities and in doing so,
highlight their role in improving key aspects of HIV care
 Celebrate and publicize the successes of consumer involvement in
QI activities among patients and staff
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Dimensions of PLWHA Involvement
• Annually assess the programmatic level of PLWHA
involvement throughout the HIV Program
 Develop and/or adopt a standardized assessment tool to evaluate the
level and effectiveness of consumer involvement
 Conduct assessment annually and discuss the results with the QM
team/committee
 Respond to the findings and make adjustments moving forward
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The Right Structure with the Right Tool
Question
How are you currently utilizing
patients and/or patient experience
in your systems or service delivery
improvement activities?
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What am I trying to do?
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Patient Involvement Structures
• Statewide
Consumer
Advisory
Boards
 Planning Groups
 Advisory Groups
Organizational
Boards
Statewide
Planning
Bodies
• Regional
 Consortia
 Planning Councils
• Local
Clinical Quality
Teams
Regional
Planning
Bodies
 CABs
 Quality Teams
 Organizational Boards
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Qualifications, Expectations, and Selection
Consumer Advisory Board
Quality Management Team
• Qualifications
• Qualifications
 Meeting Participation
 Meeting Participation
 Person Living with HIV
 Person Living with HIV
• Expectations
 Provide Input and Feedback
 Share Personal Experience
• Make-up
 Demographic Based
 Knowledge and Skills of QM
• Expectations
 Provide Input and Feedback
 Support QI Activities
 Team Responsibilities
• Make-Up
 Skills Based
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Tools for Collecting Patient Experience
• Solicitation Methods
Assessments
 Needs Assessments
One on One
Focus
Groups
 Focus Groups
 Satisfaction Surveys
 Key Informant Interviews
 Community Town Halls
 Patient-Provider
Town Halls
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Surveys
Conversations
Patient Quality Champions
Champions and Experts
• Champion
 (noun) - a person who vigorously supports or defends a
person or cause
• Expert
 (noun) - a person who is very knowledgeable about or
skillful in a particular area
 (adjective) - having or involving a great deal of knowledge
or skill in a particular area
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Identifying a Champion
• Draw from your ENTIRE patient population
• Choose patients who
 Are self-managing patients
 Demonstrate prosocial characteristics
 Are comfortable with and have access to technology
 Are able to commit to a defined period of involvement
 Can work collaboratively
 Express a desire to learn new skills
• The “squeaky wheel” might not be the best choice
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Dimensions of Quality
Technical Quality
Provider Perception
of Quality of HIV
Care
Experience Quality
Patient Perception of
Quality of HIV
Care
Leonard Berry, Texas A&M University, IHI conference 2001
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Preparing a Champion
• Recognition of patient experience as only a foundation
• Identification of Capacities for Quality Management
 Performance Measurement
 Computational Skills
• Statistical Calculations
• Evaluating Data
 Quality Improvement & Management Models
• Advocacy Skills
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Developing an Expert
• Adult Learning Theory
• Facilitation of Disenfranchised Learners
 Math
 Science
• Building Capacity of Non-Medical Professionals
 Performance Measurement
 Data Analysis
 Quality Management
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Patient Quality Advocates
• Quality Advocates are
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Activated Patients
Comfortable with data
Effective communicators
Comfortable with technology
Effective and supportive team members
Quality improvement literate
Patient Involvement in Quality Management
The goal is to incorporate
Patients and Patient Experiences
into quality improvement activities.
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Patient Involvement Resources
Capacity Building
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Self-Management Resources/Tools
Resources
Making Sure Your HIV Care is the Best It Can Be Training
http://www.nationalqualitycenter.org/index.cfm/5943/13886
Making Sure HIV Patient Self-Management Works
http://www.nationalqualitycenter.org/index.cfm/5943/16134
Shared decision making toolkits
http://www.dhmc.org/webpage.cfm?site_id=2&org_id=844&gsec
_id=0&sec_id=0&item_id=43192
Workbook on Developing and Evaluating Patient Decision Aids
http://decisionaid.ohri.ca/docs/develop/Develop_DA.pdf
Tools
Ottawa Personal Decision Guide- 1 page, 2 page
http://decisionaid.ohri.ca/docs/das/OPDG.pdf
http://decisionaid.ohri.ca/docs/das/OPDG_2pg.pdf
Choosing Health for Life: A Patient Medical
Journal
http://www.nationalqualitycenter.org/index.cfm/565
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My Shared Care Plan- A Health Management Tool
http://www.ihi.org/IHI/Topics/HIVAIDS/HIVDiseas
eGeneral/Tools/My+Shared+Care+Plan.htm
Tips and resources to help patients become more involved in their Wallet Sized Appointment Card
health care by asking the right questions
http://www.ihi.org/NR/rdonlyres/B35A1840-5434http://www.ahrq.gov/questionsaretheanswer/
44E8-A0AB7AB91F3DC22D/358/Tool_WalletSizedApptCard.p
df
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