promoting research participation as a part of healthy aging roar for 2014... · jane tilly, aoa/acl...
TRANSCRIPT
Learning Objectives for Today’s Presentation
• The need for various types of research on Alzheimer’s and other dementias
• Initiatives & resources of the NIA, CDC, ACL relating to Alzheimer’s disease and dementia
• Materials developed to help aging services and public health networks educate older adults and family caregivers on how research participation can be a part of healthy aging
• Ways that Aging Network organizations & professionals can promote these federally-funded resources to their constituents
• Lessons learned by aging services and public health agencies in sharing research participation messages
Urgent Need for Research Participants
• ~150 Alzheimer’s and MCI trials currently recruiting
• Seeking 70,000+ participants
• Will likely need to screen at least 5-10 people for every participant enrolled in a trial
• Pharmaceutical Research and Manufacturers Association: Recruiting and retaining clinical trial participants is “currently the greatest obstacle to developing new Alzheimer’s treatments.” From
http://www.phrma.org/sites/default/files/Alzheimer%27s%202013.pdf
Alzheimer’s Disease
More than 5 million Americans are living with
Alzheimer’s disease
Alzheimer’s disease is the 6th leading cause of death and the 2nd most feared disease
in the U.S.
Costs of caring for people with dementia in the U.S. in 2010
were between $159 billion to $215 billion with numbers anticipated to rise in coming years.
Delaying dementia by 5 years would reduce projected Medicare dementia
costs by nearly 50%.
Interest in Alzheimer’s / dementia & research • ACL (Aging Services Network)
– Provide information, referrals & support to individuals & caregivers on Alzheimer’s & dementia (I & A, ADSSP, Family Caregiver programs)
– Move toward healthy aging, prevention & evidence-based programs
– Funds 24/7 National Alzheimer’s Call Center (800-272-3900 or www.alz.org) & manages www.alzheimers.gov
• CDC (Public Health network) – Healthy Brain Roadmap
– Many state public health departments involved in state Alzheimer’s Plans and other state activities
Aging and Public Health: Potential Channels
Aging Services • Information & Assistance Hotlines
• Health & Wellness Programs at Senior Centers & Nutrition Sites
• Caregiver Support groups
• Respite
• Aging & Disability Resource Centers
• Care Coordination, In-home Chore & Homemaker Programs
• Senior Transportation & Home Delivered Meal Programs
Public Health
• Community coalitions
• Public health centers & clinics
• State/Local plans
• Educational programs
• Community health workers
Reaching Underrepresented Populations Aging Services
• 11,304,795 Total Clients
• 2,879,521 Registered Services Clients
• 25% of registered services clients are racial/ethnic minority
• 29.5% registered services clients below poverty
• 37% rural
• Survey of Caregiver Program participants found 60% caring for someone with dementia
Public Health
Survey of state health departments:
• 84% of agencies support health disparities or minority health initiatives
• almost three-fourths work to address rural health issues
• approximately three-fourths provide financial support to primary care providers in their state
Interest in Alzheimer’s / dementia & research • NIH (Researcher Network)
– NIA is lead Federal agency for Alzheimer’s research
– NIH: Approximately $500 million in support for Alzheimer’s research grants
– Funds 27 NIA-funded Alzheimer’s Disease Centers
– Funds Alzheimer’s Disease Education & Referral (ADEAR) Center (800-438-4380 or http://www.nia.nih.gov/alzheimers)
Engage older adults about research participation
Deliver message through trusted networks
Help accelerate scientific discovery
(starting with Alzheimer’s research)
Utilize existing networks & resources
Easy action step
Measureable impact
Objective: Low cost, high impact
Why This Project?
U.S. National Plan to Address Alzheimer’s top goal:
Prevent and effectively treat the disease by 2025
Major push to conduct research to test emerging prevention and treatment strategies
Collaboration among government agencies to support efforts
Challenges to Recruitment for Alzheimer’s Trials
• Participation of a study partner/caregiver often required
• Issue of consent/assent for people with dementia
• Studies likely to involve invasive procedures
• Barriers for older adults (e.g., co-morbidities)
• Barriers for under-represented communities (e.g., mistrust)
• Reluctance of primary care physicians to diagnose cognitive impairment (in the absence of treatment)
• Reluctance of PCPs to refer patients to research
Research Participation Positive attitude
• Only 16% of Americans report that they or a family member have participated in research
• However, 76% feel that clinical research is very important and would be very or somewhat likely to participate in a trial
Need more information
• Lack of information a top-cited barrier to participation in research
• After physicians, federal government considered second most responsible to educate the public about clinical trials
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
Research Studies Need All Kinds of People – Including YOU!
Of different racial and ethnical backgrounds
Men and women Of all ages
Of different racial and ethnic backgrounds
Who are healthy or who have health problems
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Benefits of volunteering for research
Help others, including future generations of your family who may be at risk
Learn more about your health conditions
from experts
Receive regular monitoring by health
professionals
Get information about support groups and resources in your community
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Join in to make a difference
There are many research studies going on right now that are urgently looking for volunteers.
Can you help?
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.
ResearchMatch
Go to: www.ResearchMatch.org/roar
You must have an email address to sign up.
You can call 1-866-321-0259 if you need help with online registration.
Resources in our community
Placeholder here for any local registries, resources or research studies currently recruiting
Join your family, neighbors and friends participating in research to make a difference
for yourself and future generations!
Go to www.ResearchMatch.org/roar or for help registering online call 1-866-321-0259
What’s next with ROAR?
• Working to bring together Aging Services, Public Health, Alzheimer’s Research Centers in selected areas/agencies who have expressed interest
• Testing out materials, strategy to get feedback (Summer 2014)
• Refining materials and strategy
• Wider dissemination, outreach (Fall 2014)
• Anyone can go to www.researchmatch.org/roar for more information & to sign up!
Take Away • Talk with your
clients/consumers about the importance of research participation, and share materials as available.
• Consider how these messages of research participation fit into your current work on healthy aging.
• Looks for ways to partner with other organizations and groups to share info.
ROAR Team
Amy Wiatr-Rodriguez, AoA/ACL
Jennifer Watson, NIA/NIH
Angela Deokar, CDC
Nina Silverberg, NIA/NIH
Kate Gordon, AoA/ACL
Hunter McKay, AoA/ACL
Jane Tilly, AoA/ACL
Contact: Jennifer Watson, [email protected]
Aging & In-Home Services of
Northeast Indiana
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PROMOTING INDEPENDENCE, DIGNITY, & ADVOCACY FOR ALL OLDER ADULTS &
PERSONS WITH DISABILITIES.
N4A Annual Conference Recruiting Older Adults
Into Research (ROAR)
Aging & In-Home Services
of Northeast Indiana, Inc.
Connie Benton Wolfe, BSW, MS
President/CEO
Chris Forcucci, RN, BSN, BA, FGNLA
Senior Vice President,
Integrated Services & Research
Mission Statement
Our mission is to promote independence, dignity, and
advocacy for all older adults, persons with disabilities, and
their caregivers.
Our Clients – A Profile
Age range (Under 1 year - 103 years old)
85+ 17%
75-84 20%
65-74 18%
Under 65 45%
Gender 29% Male 71% Female
Ethnicity 22% Minority 78% Caucasian
Living Below Poverty 52%
Living Alone 48%
Aging & In-Home Services of
Northeast Indiana, Inc.
THREE PRIMARY AVENUES of SUPPORT :
• Planning, funding and provision of HCBS as a regional AAA.
• Streamlined access to information, care options, and benefits.
• Comprehensive assessments, pre-admission screening and long-
term care management.
Make that….FOUR AVENUES of SUPPORT:
• Facilitating community-based participatory research
for our target populations.
An Organizational Commitment to
Research . . .
Strategic
Organizational
Priority
• Stated and then
implemented…
Why Community-based Research?
• Document the need for services or the
impact of services
• Improve the quality of services
• Assist in development of EBP models
• Stay on “cutting edge” of practice
Why Community-based Research?
(cont.)
• Enhance organizational legitimacy,
leadership & “expertness”
• New relationships & partnerships
• FUNDING stream
Questions to ask …
• Is the project in line with the mission
of our organization?
• What does my
organization/community/ client base
gain from this research project?
• What will participation “cost me” and
will I be reimbursed? (ROI)
ROAR Project
• AIHS ROAR ACTIVITES
Participation in national Thought Leaders Group
Feedback on Toolkit
ROAR Pilot Site
ROAR Indiana
• Planning o Initial Meeting- May 2014
o Active stakeholder group- averaging 15 attendees
AAA
AARP
Alzheimer’s Association
College of Pharmacy
Department of Health
Health System Community Nursing Group
Health Vision- Minority Provider
ROAR Indiana
• Planning o Active stakeholder group- State or National participants
NIA funded Alzheimer’s Disease Center
State Division on Aging
Community Health Engagement Program- ND
ResearchMatch
National Institute on Aging
Administration on Community Living
ROAR Indiana
• Implementation
o Pilot Activities
• Fort Wayne
• Indianapolis
o Pilot Activities
• Senior Health Fairs/Expos- x 2
• Focus Group- minority seniors
• Memory University
• Presentation to Community Research Consortium
• AARP Meeting
ROAR Indiana
• Participants Demographics
o N= 55
• 10 male/45 females
• Average Age 68.7 years
• Age range 32-87 (under 60=7; over 70=23)
• Race: American Indian=1; Black=17;
White=36; No answer=1
• Education: Less= 2; HS grad=11;some
college=14; college grad/professional=30
ROAR Indiana
Participant Feedback
1. How interested are you in being a part of research?
(n=55) Average response=3.3/5
2. Based on the information provided today how likely
are you to go to the ResearchMatch website to learn
more? (n=52) Average response=2.8/5
ROAR Indiana
Participant Feedback
3. Based on the information provided today how likely
are you to sign up for ResearchMatch or other research
projects? (n=53) Average response=3/5
4. How likely are you to share with others the
information you learned today about research?
(n=54) Average response=2.7/5
ROAR Indiana
Participant Feedback
5. What ways would you suggest to get older adults
to volunteer for research? • Face to Face; Home visits; Physician referral
• Via church, senior centers, health fairs
• Workshops, flyers, mailings
• Convince their children
• Provide incentives; transportation; lunch
• “Just Ask”
ROAR Indiana
Participant Feedback
Focus Group • Computer is a barrier for older adults
• Need to provide incentives for participation
• Go to where the older adults are
• Think about the language you use
• Have people available to answer questions
• Provide Community education
• Large Font
ROAR Indiana
• Provider Demographics
o N= 28
• 5 male/23 females
• Average Age 46 years
• Age range 27-81 (under 40=12; 65+=2)
• Race: Black=4; White=24
• Education: HS grad=1;some college=1;
college grad=13; professional degree=14
ROAR Indiana
Provider Feedback
1. How useful do you believe this approach is in
delivering the intended message of the importance of
research and the need for volunteers?
(n=27) Average response=4/5
2. How likely would you be to share the information
provided in ROAR with individuals you serve?
(n=27) Average response=4.4/5
ROAR Indiana
Provider Feedback
3. Based on information provided how likely do you
think older adults will be to sign up for RM or other
research projects?
(n=27) Average response=3.1/5
ROAR Indiana
Provider Feedback
4. What is missing from this information?
• Computer knowledge is a barrier
• Highlight that it is confidential and secure
• Examples of study might be helpful
• Keep it short and sweet
• Larger font size
ROAR Indiana
Provider Feedback
4. What do you believe is the best way to share
information about research opportunities with potential
participants?
• Doctors office
• TV, radio, public service announcements
• Newspaper articles; mailings
• Senior Centers; Face-to-face; community education
• CBO’s
ROAR Indiana- Next Steps
• Review and consider how to incorporate feedback
into local recruitment strategies
• Provide community education for older adults &
their caregivers
• Educate potential stakeholders- build community
capacity
• Share message with church leaders; parish nurses;
physician groups; etc.
Research at AIHS: Current Studies
• PCORI Grant
Northwestern University- Feinberg School of
Medicine
Lee Lindquist, MD, Principal Investigator
• Pre-Diabetes Study
University of Iowa, College of Nursing
Sandy Daack-Hirsch, PhD, Principal Investigator
Research at AIHS: In process
• Retirement Research Foundation
Caregiver Grief Study
Univ. of Iowa, School of SW; College of Nursing
Sara Sanders, PhD, & Howard Butcher, Co-PIs
• NIH
Diabetes Self Management Study
University of Iowa, College of Nursing
Collaboration with local Health Systems
• Andrea Wallace, PhD, PI
Research at AIHS: Proposed Studies
• PCORI Grant
Northwestern University- Feinberg School of
Medicine
Lee Lindquist, MD, Principal Investigator
• Pain Study
University of Iowa, College of Nursing
Keela Herr, PhD, RN, FAAN
Other AIHS Research Activities
• Community and Organizational Activities
Community-based Research Consortium
Development of local community capacity for
CBR
Manuscript Development