National Institutes of Health : “Partners in Research”

Engaging the Community in Clinical Research

The EventsMarch 2009 - Genetic Risks and Cancer June 2009 - Medical InnovationsJuly 2009 - Overcoming ObesityAugust 2009 - Understanding Alzheimer’sOctober 2009 - Hungry Planet, Healthy SchoolsFebruary 2010 - Women’s Heart and HealthMarch 2010 - OCD Across the LifespanApril 2010 - Low Vision & GlaucomaMay 2010 - The Other Women’s CancersJune 2010 – Prevention & Treatment of Type 2 DiabetesAugust 2010 – From Illness to Activist: Kris Carr Author of “Crazy Sexy Cancer Tips"

Responding to recent changes in how the public obtains health information, this NIH-funded “Partners in Research” project uses interactive health research forums

and the addition of social networking to the University of Michigan’s current clinical research web portal, UMClinicalStudies (http://www.umclinicalstudies.org/), to speed the exchange of health research information. Building public participation

and the opportunity for bi-directional communication in the clinical research process is key to producing research that is more relevant to people’s needs and

concerns, more reliable, and more likely to be used.

Current Findings Despite the overarching fears and mistrust regarding research, there ran an overwhelming 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 to participate: People would like to be involved.

In addition to the survey results, this is evidenced by the 928 people attending the forums; the over 7,600 people accessing the health research forums online at http://www.aadl.org/video/collection/10; and the increased activity the UMClinicalStudies website.

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 may be more advantageous to categorize opportunities via UMClinicalStudies as “health-related research” vs. “clinical research” in order to attract the attention of a broader audience. Likewise, by 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 health information, which, according to participants, is increasingly on-line.

The PurposeIdentify and bring in speakers and researchers whose topics resonate with local researchers and with the public. These speakers are of local or national renown in their �elds, who generate great interest and attendance. This partnership works to develop appropriate connector pieces to link information about health and clinical research to current research studies occurring at the University of Michigan (UM).

Methods and EvaluationPatrons 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 research literacy and general attitudes about clinical research.

Focus groups are conducted at AADL to understand the participants' opinions of the ideal way to learn about clinical studies and research.

UMClinicalStudies usability and functionality is also evaluated through user-observation (both volunteers and research teams), surveys, interviews, performance analysis, usability tests, ongoing assessment of systems in use, and ongoing community input.

Analyzing e�ectiveness of UMClinicalStudies is done using statistics of Registry enrollment, such as number enrolled, the diversity of participants, and querying study teams to evaluate successful enrollment of volunteers through UMClinicalStudies.

The Partners The Ann Arbor District Library, Michigan Institute for Clinical & Health Research, and University of Michigan Taubman Health Sciences Library address the need for community engagement in clinical research by incorporating community expertise and knowledge in several innovative strategies designed to raise the level of literacy, awareness, and participation in clinical health research.

Social MediaAll three partners utilize social media, primarily Facebook and Twitter, to share information with the public. Each partner promoted the PIR events through their respective accounts. The Taubman Health Sciences Library uses their Twitter account to live Twitter each event.

Dorene S. Markel, MS, MHSACeleste Choate, MILS Molly White, BAKate Saylor, MSI

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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Film and Panel Discussion: In The Family: 3-17-09

From Ideas to Innovation 6-9-09

Overcoming Obesity And Winning At Health 7-8-09

Understanding Alzheimer's 8-27-09

Hungry Planet/Healthy Schools 10-7-09

Women's Heart & Health 2-3-10

Obsessive Compulsive Disorder 3-24-10

Living Well With Low Vision And The Science Of Glaucoma 4-15-10

The Other Women's Cancers: Endometrial, Cervical and Ovarian 5-13-10

The Prevention and Treatment of Type 2 Diabetes 6-10-10

From Illness to Activist with Kris Carr, Author of "Crazy Sexy Cancer Tips" 8-17-10

Engaging the Community in Clinical Research, NIH Grant 5R03NS065493-02

# of total views as of 01/03/12 # of Forum Attendees

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