Bureau of Sages

September Retreat
Welcome!

Welcome

Host Welcome
Introductions
Jen sends greetings
Raj & Josh send regrets

One word or phrase to describe your

experience with the Bureau of Sages
2

Agenda
Member Updates
Mission, Vision, Values, & Symbol Discussion

Evaluation Update
Break

Research Presentations
Presentations & Feedback (small groups)
Large Group Discussion
Lunch

Next Step, Adjourn & Debrief

3

Update: Reviewing a Research Question

We reviewed an example of Comparative
Effectiveness Research on stress and risks for
cardiovascular disease:
We read a 4 sentence summary and identified the
condition, health outcome, interventions, and population.
We discussed whether the research question was
interesting, relevant, feasible and ethical.

Feedback on the experience:

Summaries need to be in everyday language.
Presenting study information in more than one format is
helpful.
The term intervention is intimidating for some.
4

Update: Mock Review Session

Amy presented a summary of a study called
Resilience in Aging with Disabilities
Feedback on the study raised many important issues:
Ability of a researcher to gain rapport with participant.
People are multifaceted, we must ask multifaceted
questions/ incorporate a lifecourse perspective.
Relevance of the study for people under age 65.
Effect of stigma/respondent bias on participants
responses.
The importance of the recognition of aging beyond
disability.
Additional outcomes such as sadness, pain and coping.
5

Update: Mission, Vision & Symbol

We discussed the difference between a vision
and a mission.
We brainstormed lists of key words and
phrases about the Bureau of Sages.
We drafted some statements and later we
reviewed and revised these drafts.
We discussed ideas for a symbol.
Today we will review the most recent drafts.
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Draft Mission
Empowering nursing home community
members and stay-at-home elders to learn
about research and collaborate with
researchers to advocate for timely, useful
research that matters to them.

Draft Vision

Improved lives for older adults as the

result of Patient-Centered research.

Draft Values
Sharing
Perspectives
Being Heard
Active Listening
Open
Dialogue
Speaking My
Language

Having
Compassion
Mutual
Understanding Respect
Unity and
Teamwork
9

Symbol Concepts
Images that convey collaboration and values
hands in a circle
hands locked together
fists or fists that come together

Symbols that convey health and wellness as

well as compassion for the patient
heart
caduceus (symbol for medicine)

These ideas will be used to choose a symbol.

10

Revised Evaluation Process

Rebecca Johnson

Building on feedback and

evaluations to date from
sages

This process is dedicated to the memory of

Arnold April, VSC member of the Bureau
of Sages

Professionals need to be aware of

the person they are treatings
attitude. They need to consider how a
person feels towards their health and
medical conditions, and how he or she
will handle it

Whats been on our plate?

Whats it all about and introductions
Our stories of health

Understanding PCORI : Reviewing the

videos
Whats the health research lingo?
Sharing experiences and thoughts one to
one

Introductions

Who are we?

Founding Members: Bureau of Sages

Who are we?

Founding Members: Health and Community
Researchers

Our stories
Learn as
you go
(Julie)
When I think
of aging I think
of loss (Ariella)
I dont know
when I got this
old! (Susie)

Not always being

heard (Michael,
Joan, Sheri)..
Makes me feel sad
(Nancy)

When I think of
aging I think of
frustration
(Carol)

What is the
Bureau of
Sages?

A Bureau of Sages
is:
Getting together
+ Time spent
getting to
know each other
+ Listening to
health stories

= Getting heard

Understanding
PCORI: video
critiques

PCORI
Video
Critique

PCORI video critique

Members of the Bureau commented:
Fast transitions,
distracting music,
Disappearing text
These made it
difficult

Speakers were
enthusiastic,
committed and
sincere

Older people
living with
disabilities
were not
there
PCORI truly wants
patient opinions
and a variety of
perspectives to be
heard

Members had
to watch
several times

Ask patients
what to
include in
video

What's the
health research
lingo?

SPEAK MY
LANGUAGE!

Patient Reported
Outcomes are
reports that come
direct from a
person about their
health

Applied Research
solves practical
problems

Comparative
Effectiveness
Research

Clinical research
determines safety
and effectiveness

compares two
approaches to
health care

A Health
Intervention is
a program
which helps to
change behavior
or improve
health

Patient Powered
Research Networks
are run by groups
who share a health
condition and want
to do research

Speak my language activity

Members of the Bureau in their own words commented:
At the time I
felt I
understood not
so sure now

I understand the
professional tone
but I dont like it

Sharing
perspectives

Sharing stories in pairs

Bureau of Sages commented:
I liked the
participants
because I knew
who they were

I liked getting
together in
twos and
sharing

Paired
activity
marvelous

New Tools

A Placemat at the Table

Which you complete after each activity

Bureau of Sages Activities : Retreat 3

STEP ONE: Like, So-So, Didnt Like

STEP TWO: Select a comment or add a thought

Break
10 min
Check your cell phones!

33

Research Study Presentations

(An Introduction to Research Methods)
Two researchers present a
study to:
Virtual Senior Center
members
Lieberman members

Members will provide

feedback to the researcher

Topic/Condition
Methods
Population
Outcomes of Interest

Significant?
Innovative?

Feasible?
Ethical?
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Lieberman Research Discussion

with Robyn Stone

EXPERIENCE

AGING

Qualitative and quantitative research

Case studies, survey research, program evaluation
Background is in aging services policy; translating research to
policy and practice.

35 years in the field

Policy work includes DHHS Assistant Secretary on Aging in 1990s
Senior researcher current Senior VP for Research at LeadingAge

Lieberman Research Discussion

with Robyn Stone

Question

Objective

What is the prevalence and impact of intergenerational programs

in residential settings where large numbers of elders live?

How many LeadingAge organizations offer formal programs that

bring young and old people together?
What programs are most successful and why?
How do these programs affect quality of life of elderly people
engaged in the programs?

Lieberman Research Discussion with R. Stone

Topic/Condition: What are successful programs that bring
elderly and young people together to help each other.
Methods: Multi-faceted: survey of LeadingAge members;
case studies of promising programs; focus groups with
elderly participants.
Population: Elderly living in affordable and market rate
independent living; youth engaged in programs working
with the elderly.
Outcomes of Interest: Best practices in intergenerational
programming in independent living; better understanding
of how this impacts quality of life for elders.

37

VSC Research Discussion

with Tamar Heller

EXPERIENCE

AGING

I conduct research on the intersection of aging and

disability with a focus on persons who develop their
disability earlier in life. One of the key areas I am
interested in is health and long-term services and supports
I had worked at schools and adults programs for individuals
with developmental disabilities and I have a sister with
disabilities.

Most of my work has been in developing interventions for

older adults with developmental disabilities. I developed
curricula and interventions in person-centered later life
planning, future planning, and health promotion. I have
also done research on bridging aging and disabilities.

VSC Research Discussion

with Tamar Heller
Question

Objective

What is the impact of Medicaid managed care on older

adults with physical disabilities?

To compare differences between older and younger

adults with physical disabilities across time based on
whether they are in managed care or not on the
following outcomes:
health care use
consumers satisfaction
health and activities of daily living

VSC Research Discussion

with Tamar Heller
Topic/Condition: Aging and physical disabilities

Methods: Survey and Medicaid data on health care

use
Population: 40,000 adults with physical disabilities in
Chicago and surrounding suburbs and 1000 with
surveys
Outcomes of Interest: Unmet health care needs,
Satisfaction with health care, Health and activities of
daily living

40

What did we learn?

Overview of each study
Feedback from each session

41

Lunch & Conversation

42

Next Steps/Adjourn
Homework gatherings
Scenarios about Research Ethics
Plan Annual Events for VSC & Leiberman
Review a Comparative Effectiveness Study
Research Terms

Next RetreatDecember 9th (Friday)

2017 Retreatsto be scheduled soon
Debriefing
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