1. Dorene S. Markel, MS, MHSA
National Institutes of Health : “Partners in Research” Celeste Choate, MILS
Engaging the Community in Clinical Research Molly White, BA
Kate Saylor, MSI
The Purpose Social Media
Responding to recent changes in how the public obtains health information, this Identify and bring in speakers and researchers whose topics resonate with local All three partners utilize social media, primarily Facebook and
NIH-funded “Partners in Research” project uses interactive health research forums researchers and with the public. These speakers are of local or national renown Twitter, to share information with the public. Each partner
and the addition of social networking to the University of Michigan’s current clinical in their fields, who generate great interest and attendance. This partnership promoted the PIR events through their respective accounts. The
research web portal, UMClinicalStudies (http://www.umclinicalstudies.org/), to works to develop appropriate connector pieces to link information about Taubman Health Sciences Library uses their Twitter account to live
speed the exchange of health research information. Building public participation health and clinical research to current research studies occurring at the Twitter each event.
and the opportunity for bi-directional communication in the clinical research University of Michigan (UM).
process is key to producing research that is more relevant to people’s needs and
concerns, more reliable, and more likely to be used.
Methods and Evaluation
Patrons attending the Health Research Forums are asked to take a pre- and post-survey to
identify and to measure the impact that various features of the Forum have on health
The Partners research literacy and general attitudes about clinical research.
The Ann Arbor District Library, Michigan Institute for Clinical & Health Research,
and University of Michigan Taubman Health Sciences Library address the need for Focus groups are conducted at AADL to understand the participants' opinions of the ideal
community engagement in clinical research by incorporating community way to learn about clinical studies and research.
expertise and knowledge in several innovative strategies designed to raise the
UMClinicalStudies usability and functionality is also evaluated through user-observation
level of literacy, awareness, and participation in clinical health research. The Events (both volunteers and research teams), surveys, interviews, performance analysis, usability
March 2009 - Genetic Risks and Cancer tests, ongoing assessment of systems in use, and ongoing community input.
June 2009 - Medical Innovations
July 2009 - Overcoming Obesity Analyzing effectiveness of UMClinicalStudies is done using statistics of Registry
August 2009 - Understanding Alzheimer’s enrollment, such as number enrolled, the diversity of participants, and querying study
October 2009 - Hungry Planet, Healthy Schools teams to evaluate successful enrollment of volunteers through UMClinicalStudies.
February 2010 - Women’s Heart and Health
March 2010 - OCD Across the Lifespan
April 2010 - Low Vision & Glaucoma
May 2010 - The Other Women’s Cancers Current Findings
June 2010 – Prevention & Treatment of Type 2 Diabetes Despite the overarching fears and mistrust regarding research, there ran an overwhelming
August 2010 – From Illness to Activist: Kris Carr Author of “Crazy Sexy Cancer Tips" desire for people to participate in research studies coupled with a strong indication that
they would like more awareness of opportunities to learn about current research and ways
Engaging the Community in Clinical Research, NIH Grant 5R03NS065493-02
to participate: People would like to be involved.
592
From Illness to Activist with Kris Carr, Author of "Crazy Sexy Cancer Tips" 8-17-10 137 In addition to the survey results, this is evidenced by the 928 people attending the forums;
263
The Prevention and Treatment of Type 2 Diabetes 6-10-10 67 the over 7,600 people accessing the health research forums online at
204
The Other Women's Cancers: Endometrial, Cervical and Ovarian 5-13-10 25
http://www.aadl.org/video/collection/10; and the increased activity the UMClinicalStudies
812
Living Well With Low Vision And The Science Of Glaucoma 4-15-10 36
website.
Obsessive Compulsive Disorder 3-24-10
281
62
488
Women's Heart & Health 2-3-10 56
603
These platforms also have provided substantial input on how simply changing the
“language” of research can improve opinions and attitudes in the public. For instance, it
Hungry Planet/Healthy Schools 10-7-09 150
730
Understanding Alzheimer's 8-27-09 133
778
may be more advantageous to categorize opportunities via UMClinicalStudies as
Overcoming Obesity And Winning At Health 7-8-09 85
724
“health-related research” vs. “clinical research” in order to attract the attention of a broader
From Ideas to Innovation 6-9-09 73
1822
audience. Likewise, by understanding the public’s perceived benefits and drawbacks of
Film and Panel Discussion: In The Family: 3-17-09
research, we can gauge our messages to respond to natural inquiries and have a presence
104
0 500 1000 1500 2000
# of total views as of 01/03/12 # of Forum Attendees
where people tend to go for health information, which, according to participants, is
increasingly on-line.
This project was funded by grants R03 NS065493 and R03 NS065491-0 from the National Institute of Neurological Disorders at the National Institutes of Health