Incorporating Older Adult Voices Into

Meaningful Research
Staff: Amy Eisenstein, Rebecca Berman, Rebecca Johnson,
Hailee Yoshizaki Gibbons, Patty Voloschin, Nissa Romanowski,
Morna Brothers
Members: Ariella Balkin, Sherri Persin, Mary Ana Nemenski,
Susie Rabinowitz, Michael Wax, Nancy Weinberg, Janice Baker-
Offutt, Carol Fortson-Smith, Bonnie Kammer
Acknowledgements: Jen Brown, Tom Prohaska, Robyn Stone,
Tamar Heller, Josh Hauser, Raj Shah, Katharine Houpt, Andrea
Koch, Anna-Liisa LaCroix
Agenda
Introduction of PCORI and the Bureau of Sages
Lieberman Community Presentation
Virtual Senior Center Presentation
Overview of the Evaluation to Date
Wrap-up and Next Steps
Q&A
PCORI
Background here on PCORI
PCORI Engagement Rubric
Reciprocal relationships
Co-learning
Partnership
Trust, transparency, and honesty
What is the Bureau of Sages?
The Purpose of the Bureau is to bring together a variety of
stakeholders to learn about and discuss research concepts in
order to provide voice to the direction, design, and
implementation of national research on aging.

Members will learn from one another through activities and

discussion.
Lieberman Community and Virtual Senior Center Members will
gain experiences in expressing their expertise as patients and
users of healthcare.
Clinicians and researchers will gain experiences in listening for
and identifying meaningful outcomes that matter to users of the
health care system.
Long Term Objectives of the Bureau
To prepare a diverse group of Stakeholders with information,
knowledge, and training on Patient-Centered Outcomes
Research and Comparative Effectiveness Research in order for
them to:
1) Serve as an advisory bureau to CJE SeniorLifes internal
research department.
2) Serve as an advisory bureau to local and national
researchers wishing to conduct Comparative
Effectiveness Research or Patient-Centered Outcomes
Research.
3) Serve as individual advisors to larger Patient-Powered
Research Networks.
4) Serve as champions and role models for incorporating
the voice of diverse patient populations into research.
 The
A Bureau ofof
Bureau Sages:
Sages
Empowersis:nursing
home community
members
Gettingand stay-at-
together
home elders to learn
+ Time spent
about research and
gettingwith
collaborate to
know eachtoother
researchers
advocate for timely,
+ Listening to
useful research that
healthtostories
matters them
= Getting heard
Drawing credit to Katharine Houpt
Innovative Solutions
In order to incorporate the voice of older adults
typically left out of research, we relied on several
approaches to improve and augment communication
and collaboration between older adults and
researchers/clinicians.
The use of technology to incorporate the voice of Stay-at-
Home Elders.
Development of facilitator guides to assist with the
challenges of leading discussions through multiple formats
Training and presentation templates for researchers and
clinicians
Creation and implementation of
hands-on evaluation method
incorporating visual cues.
Lieberman Community
Possible Agenda:
Introduce Lieberman members
Brief intro to video by member
Show the Video (10 min)
Morna or Pattys perspective
Virtual Community
The Virtual Senior Center is a internet-based platform that
allows elders to connect virtually.
The Bureau of Sages uses the VSC in order to include the
perspectives of elders who may have difficulty leaving their
homes due to impairments/chronic illness, lack of accessibility,
etc.
Virtual Senior Center Members

- -
Bonnie Carol Fortson
Kammer Smith

-
Janice Baker
Offut
Perspectives from the VSC
Bonnie: What is your role on the Bureau of Sages?
Janice: Why did you join the Bureau of Sages?
Carol: How has the experience been so far? What have you
learned?
Hailee: What is your perspective, as a research intern?
Evaluation
(possibleto include in Evaluationslides) Lessons Learned
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.
~Bureau Older Adult Member

Were focusing on identifying and treating illness,

when they really want in non-pharmacological
approaches for relieving pain. We emphasize their
deficits when theyd like to make the most of their
strengths.
~Bureau Professional Member
 Impressions from the Sages
As a clinical psychologist who has done a lot of research, I feel it is very
important for researchers to collaborate with older adults, so that
research is relevant to those who we are talking about and trying to
help.

The producers did not take into account that older people need
videos with slower transitions, clear and well pronounced
language, no background music, and the use of large text
which remains visible long enough to be read. It is also
important that all people be represented. Being old is not an
ugly or terrible thing. It is real. It will happen to all of us.

There was a free exchange of ideas and the acceptance of them. I

never sensed that he judged me as the professional with the
amateur. On the contrary, I came away with the feeling that this was
a meeting of two equals, which, of course, led to open, free
discussions.
Next Steps
Replication of the Bureau in additional settings and
dissemination of materials.
Inviting researchers and clinicians to present their
research topics and proposals for input from the
Bureau.
Working on a sustainability plan.
Continuing to explore health topics and research
interests prioritized by Bureau members.
Continual recruitment and orientation of new
members to the Bureau.
Questions? Comments?

Want to talk with the Bureau Members?

Contact: Amy Eisenstein

Amy.Eisenstein@cje.net
773-508-1040