Dorene S. Markel, MS, MHSA                                                    National Institutes of Health : “Partners in...
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Partners in Research: Engaging the Community in Clinical Research


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  • CelesteIt would seem that collaborating with a public library to promote health literacy makes perfect sense yet, yet collaborating with the public library is still a novel approach. Why did UM, with all of its resources, think AADL would be an equal community partner? Two reasons float to the top:
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  • Partners in Research: Engaging the Community in Clinical Research

    1. 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 partnerand 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 (, 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 healthThe 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 idealcommunity 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-observationlevel 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 Womens Cancers: Endometrial, Cervical and Ovarian 5-13-10 25; 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 Womens 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 Alzheimers 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