Transcript Jennifer Watson, MA National Institute on Aging, NIH May 19, 2016

Healthy Aging & Participation
in Research
What Older Adults Should
Know
JENNIFER WATSON, MA
NATIONAL INSTITUTE ON AGING, NIH
MAY 19, 2016
Learning Objectives for Today:
• Understand the need for research participation among
older adults and how it’s connected to healthy aging
• Share easy steps that older adults can take to get involved
in research
• Connect you with relevant resources or programs online
and in your community
• Learn about ways that Aging Network & other
professionals can share this information and resources
with constituents
DELAY in
study
enrollment
DELAY in
research
findings
Source: Angela Jefferson, PhD, Vanderbilt Memory & Alzheimer’s Center
Maria,
Area Agency on Aging
Cindy,
State Health Department
Maria,
Area Agency on Aging
Cindy,
State Health Department
Key reasons why promoting research
participation makes sense
1. Can empower older adults and caregivers
2. Provides a civic engagement opportunity for people of
all health levels
3. Offers opportunities to build relationships with partners,
including those in medical and research disciplines
4. Helps build the research base to improve practice & care
5. Part of core Information & Assistance/Referral role
6. Keeps you & your organization on the “cutting edge” of
science & practice
7. Potential funding stream
Recruiting Older Adults into Research
ROAR Toolkit
ACL-NIH-CDC
Toolkit includes:
• User Guide:
• Tips for use
• FAQs
• Social media
messages
• Short & long slide decks
with speaker notes
• Customizable flyers
Now available in Spanish
and Chinese!
https://www.nia.nih.gov/health
/publication/roar-toolkit
11
Research and healthy aging
Overview of Topics
• Why research is important to healthy aging
• What you need to know about research studies
• How YOU can make a difference for yourself and
future generations by participating
13
Living longer and healthier
In 1900:
• Life expectancy: 50 years
• Top causes of death:
pneumonia/flu &
tuberculosis
Today:
• Life expectancy: 74+ years
• Pneumonia & tuberculosis
prevented or treated
14
Research and your health
Discoveries from research led to
the medicines and treatments we
take for granted today:
• Vaccines to prevent infectious
diseases such as tuberculosis
• Antibiotics to treat bacterial diseases
such as pneumonia
• Medications to manage ongoing
conditions such as high blood
pressure and pain
15
Continuing to look for answers
• How can we prevent, or cure:
– Heart disease and stroke?
– Cancer?
– Alzheimer’s disease and
dementia?
• How can we improve care and
quality of life?
To find answers, scientists
conduct research studies
16
Example: Alzheimer’s Disease
•
•
•
•
Brain disease that destroys memory and thinking
Affects as many as 5 million Americans age 65+
A leading cause of death
Currently no cure or treatment
Major research underway to understand the
disease and learn how to prevent, cure, and treat it
17
“When I was diagnosed with
Alzheimer’s, I wanted to do everything
possible to fight the disease.
I talked with my doctor to find a
clinical study that was right for me.
I know I’m doing something
that might help my children and
grandchildren avoid the disease.”
18
What you need to know about
research studies
19
Many types of research that need people
•
•
•
•
•
Interviews and surveys
Understanding disease
Improving detection and diagnosis
Prevention
Testing drugs and non-drug
treatments for safety and
effectiveness
• Testing ways to support caregivers
20
Benefits of volunteering for research
Help others, including
future generations of your
family who may be at risk
Get information about
support groups and
resources in your
community
Learn more about your
health conditions
from experts
Receive regular
monitoring by health
professionals
21
Protecting your safety and privacy
Researchers are required to follow strict rules,
enforced by the Federal Government, to protect
participants’ safety and privacy.
• Institutional Review Board
• Data Safety Monitoring
Committee
• Informed Consent
• Right to Withdraw
• Privacy
22
Concerns about participating?
• If you have many health problems, can you
participate in a study that is looking at only one
condition?
• If you are frail or have a disability, will you be strong
enough to participate?
• If you no longer drive, how can you get to the study
site?
Get your questions and concerns answered
by your doctor and the research team.
23
Research Studies Need Everyone –
Including YOU!
Men and women, of all ages, of different racial and ethnic
backgrounds, who are healthy or who have health problems
Men and women
Adults of all ages
Of different racial
and ethnic
backgrounds
Who are healthy or
who have health
problems
24
How YOU can make a difference for
yourself and future generations
25
Join in to make a difference!
Many research studies are going on right now
that urgently need a large number of volunteers.
Can you help?
26
One easy way to make a difference
Sign up with a research registry
or matching service.
• You will be contacted when studies
are looking for people like you.
• You can learn more about a study
and decide if you would like to
participate.
• It’s always your choice whether
or not to take part in a study.
• Your information will remain
confidential.
27
ResearchMatch
Go to http://www.ResearchMatch.org/roar
You must have an email address to sign up with ResearchMatch.
You can call 1-866-321-0259 if you need help with online registration.
28
Alzheimer’s Registries
• Alzheimer’s Prevention Registry
http://www.endALZnow.org/
• Brain Health Registry
http://www.brainhealthregistry.org/
• Alzheimer’s Association TrialMatch
http://trialmatch.alz.org
1-800-272-3900
29
“All of the progress that’s been made in
medical treatments has occurred
because people have stepped up to the
plate and participated in clinical trials.
They may have been your neighbor,
they may have been your relative, they
may have been someone who you do
not know and will never know.
But it’s through the efforts of those
individuals and many thousands like
them that we can make a difference.”
30
Recruiting Older Adults into Research
ROAR Toolkit
ACL-NIH-CDC
Toolkit includes:
• User Guide:
• Tips for use
• FAQs
• Social media
messages
• Short & long slide decks
with speaker notes
• Customizable flyers
Now available in Spanish
and Chinese!
https://www.nia.nih.gov/health
/publication/roar-toolkit
31
NIA Resources
www.nia.nih.gov/alzheimers
/alzheimers-and-dementiaresources-professionals
www.nia.nih.gov/alzheimers
/volunteer
32
Thank you
for helping
to ROAR!
Questions? Want more information?
Contact:
Jennifer Watson
National Institute on Aging, NIH
[email protected]
301/496-1752