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Engaging the Community in Clinical Research

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AADL is partnering with the University of Michigan Taubman Health Sciences Library and the UM Michigan Institute for Clinical and Health Research to bring clinical research to the people it is intended to help. This partnership, funded by grants R03 NS065493 and R03 NS065491-0 from the National Institute of Neurological Disorders at the National Institutes of Health, focuses on educating the public about the results of clinical research, as well as examining the best way to increase the public’s long-term health research literacy and willingness to engage in clinical research. Programs held at AADL locations bring in experts to speak about the latest discoveries and advances in research. In turn, through survey responses, program attendees help researchers understand how the public gathers health information and how they use the information they find.

Past programs from the Partners in Research series held at AADL are available online in our video collection.

For more information visit:
http://www.aadl.org/pir

To view past events:
http://www.aadl.org/video/collection/10

Published in: Health & Medicine
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Engaging the Community in Clinical Research

  1. 1. National Institutes of Health University of Michigan “Partners in Research” Engaging the Community in Clinical Research Kate Saylor, Dorene Markel, Celeste Choate Responding to recent changes in how the public obtains health information, The Purpose Social Media this NIH funded “Partners in Research” project uses interactive health research Identify and bring in speakers and researchers whose topics resonate with All three partners utilize social media, primarily facebook and forums and the addition of social networking to the University of Michigan’s local researchers and with the public. These speakers are of local or twitter, to share information with the public. Each partner current clinical research web portal, engage (www.UMengage.org), to speed national renown in their elds, who generate great interest and promoted the PIR events through their respective accounts. The the exchange of health research information. Building public participation attendance. This partnership works to develop appropriate connector Taubman Health Sciences Library uses their twitter account to live and the opportunity for bi-directional communication in the clinical research pieces to link information about health and clinical research to current twitter each event. process is key to producing research that is more relevant to people’s needs research studies occurring at the University of Michigan (UM). and concerns, more reliable, and more likely to be used. Methods and Evaluation The Partners Patrons attending the Health Research Forums are asked to take a pre and post survey to The Ann Arbor District Library, Michigan Institute for Clinical & Health Research, identify and to measure the impact that various features of the Forum has on health and University of Michigan Taubman Health Sciences Library address the need for research literacy and general attitudes about clinical research. community engagement in clinical research by incorporating community expertise and knowledge in several innovative strategies designed to raise the Focus groups are conducted at AADL to understand the participants' opinion of the ideal way level of literacy, awareness, and participation in clinical health research. to learn about clinical studies and research. engage usability and functionality is also evaluated through user-observation (both volunteers and research teams), surveys, interviews, performance analysis, usability tests, The Events ongoing assessment of systems in use, and ongoing community input. March 2009 - Genetic Risks and Cancer June 2009 - Medical Innovations Evaluating e ectiveness of engage through statistics of engage Registry enrollment, such as July 2009 - Overcoming Obesity number enrolled, the diversity of participants, and querying study teams to evaluate August 2009 - Understanding Alzheimer’s successful enrollment of volunteers through engage. October - 2009 Hungry Planet, Healthy Schools February 2010 - Women’s Heart and Health March 2010 - OCD Across the Lifespan April 2010 - Low Vision & Glaucoma Current Findings May 2010 - The Other Woman’s Cancer Despite the overarching fears and mistrust regarding research, there ran overwhelming desire for people to participate in research studies coupled with a strong indication that more awareness of opportunities to learn about current research and ways to participate: People would like to be involved. Number of attendees In addition to the survey results, this is evidenced by the 724 people attending the forums; 150 160 133 the over 2,165 people accessing the health research forums online at 140 http://www.aadl.org/video/collection/10; and the increased activity the engage webite. 120 104 100 85 80 73 # of attendees These platforms also have provided substantial input on how simply changing the 62 60 56 “language” of research can improve opinions and attitudes in the public. For instance, it may 36 40 25 be more advantageous to categorize opportunities via Engage as “health-related research” 20 vs. “clinical research” in order to attract the attention of a broader audience. Likewise, by 0 understanding the public’s perceived bene ts and drawbacks of research, we can gauge our messages to respond to natural inquiries and have a presence where people tend to go for 09 09 09 09 09 10 10 10 10 ne / 9/ 8/ / / 3/ / 5/ / Ju 17 27 /7 24 13 6/ 7/ 2/ 1 10 3/ 8/ 3/ 4/ 5/ 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

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