Massachusetts Consumer Leadership Forum Keynote Address

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.