Engaging Consumers in
Quality Improvement Activities
Themes in the Literature
Dimensions of Quality
Technical Quality
Provider Perception of Quality
Of HIV Care
2
Experience Quality
Consumer Perception of
Quality of HIV Care
Leonard Berry, Texas A&M University, IHI conference 2001
Our Goal
• To leave the meeting with a new focus and
successful strategies/tools to strengthen consumer
involvement in improving the quality of HIV
care.
• Determine how consumers, the ultimate recipients
of HIV care, be systematically involved in QI
activities among HIV Service Providers?
3
Themes from the Literature
Who is a consumer?
• A person in need of, currently using, or who has previously used a
particular service/resource who brings important perspectives to
planning and decision making process
Step Ahead/First Steps Consumer Involvement Project.1994. Christensen,S; Rosen,A; Indiana Bureau of Child
Development
• Two groups of stakeholders need to be present in a collaborative
process:
- the “experts”
- those affected by the consequences
Collaborating: Finding Common Ground for Multiparty problems. Gray, Barbara. 1989
4
Themes from the Literature
How do consumers voice their opinions?
• Technical Assistance Research Program, 1996
– 26 of 27 people do not complain; reason: they think it cannot be solved
– 91% of those who complain are not returning
– 82-95% of consumers can be reengaged if complaint is quickly and respectfully
resolved
– 5 times for more expensive to get new consumers then to keep a customer
5
Themes in the Literature
Consumer Involvement
“A process, or processes by which interested/affected
individuals are consulted and included in the decision
making of an agency, planning group or collaborative
entity”
“One measure of effective consumer involvement is
whether you can identify specific ways in which the
final decision is responsive to consumer
comments/recommendations”
6
Quality Improvement Principles
ƒ Patients are the first priority
ƒ Actions are based upon accurate and measured data
ƒ Improvements through continuous cycles of changes
ƒ Quality is achieved through people working in teams
ƒ Focus on systems of care (not individual provider)
77
NYS Quality Program Standards
A) Infrastructure for HIV Quality
B) Staff Involvement in Quality Improvement Activities
C) Performance Measurement
D) Quality Improvement Projects
E) Consumer (Consumers should be included in quality improvement
activities).
88
NYS Quality Program Standards for
Consumer Involvement
•
•
•
•
•
•
•
9
Witten Plan that includes consumer involvement in QI
Membership on the HIV QM committee
Participation on QI teams
Review performance data QI program activities
Link the consumer advisory committee with the QM
committee
Assist patients in building skills to partner with their health
care provider to improve health outcomes
QM program assesses patients’ needs and satisfaction at
least annually and consumer feedback and findings are
integrated in QI activities (through organizational
assessment).
HIVQUAL Organizational Assessment Tool
A.
B.
C.
D.
E.
F.
G.
H.
10
Quality Structure
Quality Planning
Quality Performance Measurement
Quality Improvement Activities
Staff Involvement
Evaluation of Quality Program
Clinical Information System
Consumer Involvement ('Consumers should be
included in quality-related activities.‘)
OA Questions on Consumer Involvement
11
Consumer Involvement in QI
Questions to Consider
• What are the barriers to consumer involvement?
• How do you define “meaningful” consumer
involvement (“formally” engaged in QI or through
“different” mechanisms) ?
• What are the benefits to consumer involvement in QI?
12
Consumer Involvement in QI: Barriers
Consumers may experience:
• Feeling lost, out of place due to lack of orientation and training
• Acronym angst
• Fear of disclosure
• Burnout (reliance on only a few consumers for activities)
• Practical barriers: Transportation, childcare, $$, work, time, illness or poor health
• Not getting informed of opportunities to participate
• Feeling that their input isn’t being used or doesn’t matter
Providers may
• Not understand the value of having consumers involved
• Have difficulty getting people to participate
• Have concerns about confidentiality/boundary Issues
• Have difficulty translating consumer personal stories to general advice for program
improvement
• Have limited resources for involving consumers
13
Two Flavors of Engagement Design:
Integrate or Separate?
Serve on Quality Committee
• Single committee is simpler
• Ability to directly influence
others during discussion
• Challenges non-consumers to
keep discussion
understandable
14
Serve on Consumer Committee
• May be less intimidating;
more input
• More voices, more
opportunities for people to
contribute
• Can tailor agenda and
language better to consumer
interests and knowledge
Forms of Consumer Involvement
• Qualitative issue identified through focus groups, in-depth
interviews, observations, consumer advisory councils,
mystery or expert patient, etc.
• Quantitative--numbers/statistics through satisfaction
surveys/needs assessments via mail, phone or point-ofservice,
• Patient Representation on BOD, staff, QI Committee, QI
Team and/or consumer advisory board
• Other Forms?
15
Benefits of Consumer Involvement
For the Program
• Bridges the gap between perceived needs and actual needs of
clients
• Promotes greater communication
• Decisions/changes become more credible
• Challenges the status quo
• Increases accountability
• The greater the diversity in QI, the harder it becomes for a
single perspective/philosophy to guide actions
• Indentifies service barriers and issue not thought of by
providers
• Informs outreach
16
Benefits of Consumer Involvement
For the consumer:
• Enhances the climate of partnership
• May serve to increase consumer involvement in personal
healthcare and in advocating for others
• May also have positive effects on:
- health outcomes
- health promotion
- disease prevention behaviors
17
There is no need to reinvent
“Learn from best practices”
18
Lessons Learned
Only get started if…
ƒ You have clearly stated objectives and focus on specific
areas; be concrete
ƒ You know what you will do with the results; act on data
results and suggestions
ƒ If you use data, build strong collection methodology
ƒ Everyone is informed about the process
ƒ Start small
19
Lessons Learned
ƒ Consumers get involved and stay involved when they
ƒ
ƒ
ƒ
ƒ
ƒ
20
see their input and recommendations implemented
Written standards in QM Plans on consumer
involvement
Dedicated training on quality for consumers is critical
Highlight consumer contributions
Make sure consumers are aware of opportunities to
participate
Emphasize partnership in improving quality
Strategies and Solutions
Consumers may experience:
• Feeling lost, out of place due to
lack of orientation and training
• Fear of disclosure
• Burnout (reliance on only a few
consumers for activities)
• Practical barriers:
Transportation, childcare, $$,
work, time, illness or poor
health
• Not getting informed of
opportunities to participate
• Feeling that their input isn’t
being used
• Low literacy levels
21
Strategies/Solutions:
• Training for consumers and
providers
• Develop policies for staff and
consumers
• Addressing the barriers
• Recognizing people’s work
• Disseminating opportunities
• Involving consumers in
decision-making roles
• Assigning mentors, highlighting
the importance of participation
"to represent the many other
clients whose voice needs to be
heard"
Successful Solutions from NYS
•
Development of a written QM plan that includes standards for consumer
involvement in QI by RW grantees
•
Identification of dedicated staff and other resources to work with consumers
•
Recruitment, solicitation and nomination process to serve on formal Quality of
Care Consumer Advisory Committee – QOC CAC.”
•
Developing terms of reference (bylaws/operating procedures.
•
Assigning QOC CAC co-chairs to develop quarterly meeting agendas
•
Scheduling meetings at convenient times so consumers can participate.
22
Successful Solutions from NYS
23
•
Orientation and ongoing training, coaching, and peer mentoring on QM/QI concepts and
Patient Self-Management for RW grantees, sub-grantees, and consumers.
•
Participation in the development, distribution and review of satisfaction surveys key
informant interviews, and focus groups.
•
Consumer participation on formal CABs, QI teams/subcommittees, quality learning
networks.
•
Reviewing and commenting on HIV clinical guidelines from a consumer perspective.
•
Presenting QI data to consumers for the purpose of reviewing, prioritizing, modifying
and/or developing clinical indicators.
•
Appointing consumers to serve on Boards of Directors.
Successful Solutions from NYS
24
•
Employing consumers with expertise on quality improvement concepts
and patient self-management.
•
CAC members delivering peer trainings on patient QM concepts and
patient self-management.
•
Participation on internal QI teams.
•
Emphasizing that “partnerships” is key to improving QOC and quality
of life for patients.
•
Publicize positive outcomes that resulted from of consumer input
Successful Solutions from NYS
25
•
Establishing statewide Young Adults Consumer Advisory Committee
“YACAC” to engage in QM infrastructure and QI projects.
•
Basic training on patient self-management, presentation skills, HIV
confidentiality and disclosure, and communicating/meeting with policy.
•
Providing input to RW grantees on HIV clinical guidelines, QM
infrastructure, QI projects, health care service delivery, and policy issues
facing young adults.
•
Development of face book page to communicate with and educate peers.
•
Serving as peer educators during World AIDS Day activities to raise
HIV/AIDS awareness and by discussing realities of living with the virus
(perinatally and behaviorally infected).
•
Attending conferences and training peers on patient self-management.
Open Discussion:
• What Works: How and Why?
• What doesn’t work: How and Why?
• IS “NQC” available to provide technical assistance and
support for consumer involvement in QI?
26
Sustainability Strategies
27
•
Developing training module on “Consumer Involvement in QI 101” with
input from RW grantees, sub-grantees, and consumers.
•
Training, coaching, and mentoring consultants to promote consumer
Involvement in QI among RW grantees and sub-grantees whom consultants
are working with.
•
Providing individual TA to RW grantees/sub-grantees on consumer
involvement in QI.
•
Encouraging consumers to participate in Patient Self-Management, QI 101
trainings/TOT.
•
Facilitating interaction between RW grantees/sub-grantees and consumers
through quality learning networks and QI projects.