massachusetts consumer leadership forum keynote address
DESCRIPTION
This presentation was delivered at the 2013 Massachusetts Consumer Leadership Forum as the keynote address.TRANSCRIPT
Advancing Our Involvement
Something you should know …
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
• Agitation• Activism• Advocacy
Methods of Involvement
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
Examples
• Agitation – Act UP
• Activism – The Names
Project
• Advocacy –National Quality
Center
Process for Determining Method of Involvement
• Identify the opportunities for improvement
• Identify stakeholders • Evaluate relationships between
stakeholders• Identify allies and friendly/sympathetic
partners• Build coalitions• Set goals, develop message, collaborate• Select method
Selecting Involvement Method
Method of Involvement
Characteristics of StakeholdersUnaware
Not Partnering
Aware Not
Partnering
AwarePartnering
Agitation XActivism XAdvocacy X
Old Paradigm New Paradigm
Involvement
Dimensions of Quality
Technical Quality
Provider Perception of
Quality of HIV Care
Experiential Quality
Consumer Perception of
Quality of HIV
Care
Leonard Berry, Texas A&M University, IHI conference 2001
What am I trying to do?
• Statewide– Planning Groups– Advisory Groups
• Regional– Consortia– Planning Councils
• Local– CABs– Quality Teams– Organizational
Boards
Patient Involvement Structures
Consumer Advisory Board
• Qualifications– Meeting Participation– Person Living with HIV
• Expectations– Provide Input and
Feedback– Share Personal
Experience
• Make-up– Demographic Based
Quality Improvement Activities
• Qualifications– Meeting Participation– Person Living with HIV– Knowledge and Skills of
QM
• Expectations– Provide Input and
Feedback– Support QI Activities– Team Responsibilities
• Make-Up– Skills Based
Qualifications, Expectations, and Selection
I’m illiterate.
I can’t do math.
What are Data?
• Factual information, especially information organized for analysis or used to reason or make decisions
• Numerical or other information represented in a form suitable for processing by computer
• Values derived from scientific experiments
Cultural Competency
• Data are the voice of the system . . .
• If you want to know how to ask questions or how to understand its answers, you need to know data
Data Terms
Data Terms
• Incidence– Is the number of new cases arising
in a given period in a specified population
• If you ask:–What is the total number of new
diagnosed cases of HIV in Massachusetts in 2007?
– Answer: 2007 Massachusetts HIV Incidence
Data Terms
• Prevalence – Is the number of cases in a defined
population at a specified point in time
• If you ask:–What is the total number of
persons living with HIV in Massachusetts in 2007?
– Answer: 2007 Massachusetts HIV Prevalence
Data Terms
• Percent– 1. One part in a hundred• The report states that 42 percent of
the alumni contributed to the endowment.
– 2. A percentage or portion• She has invested a large percent of
her salary.
I got . . .
• A lot of people living with HIV
• A medium size urban center
• A higher percentage of the population living with HIV
• A huge impact on my city
• A need to accurately compare my problem to yours
You got . . .
• A lot of people living with HIV
• A Metropolis• More actual persons
living with HIV • A huge impact on my
city• A need to accurately
compare my problem to yours
We have a problem . . .
Data Terms
• Rate– 1. A quantity measured with
respect to another measured quantity• a rate of speed of 60 miles an hour.
– 2. A measure of a part with respect to a whole; a proportion• the mortality rate; a tax rate
Data Limitations
• Things to consider . . .– If you want it, you have to go get it– By the time you got it, its old– There is a lot of it– It has to be interpreted and analyzed
• Appears to be, May indicate, Could mean
– It can be manipulated (massaging data)– It’s always changing
Don’t let the perfect be the enemy of the good!
Quality Advocates
Quality Advocates are:– Self-managing patients– Comfortable with data– Effective communicators– Comfortable with technology– Effective and supportive team
members– Quality improvement literate
As my yoga teacher says …
I can’t change the world but I can
change the world around
me.