Better Tools for Multi-site Research

The Agency for Healthcare Research and Quality (AHRQ) commissioned the creation of this Health Literacy Universal Precautions Toolkit. This toolkit builds on the principles of universal precautions, or specific actions that providers can take to make health information more understandable for all patients. It is designed to be used by all levels of staff in practices providing primary care for adults and/or pediatric patients. The toolkit includes: (a) A Quick Start Guide; (b) The Path to Improvement (which outlines the six steps to fully implement the toolkit); (c) Twenty short tools to identify and address areas that need improvement; (d) Links to Internet resources; (e) An appendix with resources to support implementation (e.g., sample forms, posters, PowerPoint presentations, and worksheets).

Developed by the University of North Carolina at Chapel Hill's North Carolina Program on Health Literacy. http://www.nchealthliteracy.org/toolkit/

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This wonderful resource was developed to improve the process of negotiating research relationships with Inuit communities in Canada. The guide specifically aims to help researchers understand community concerns and expectations; understand the benefits, opportunities and challenges associated with engaging Inuit communities in research; determine appropriate levels of community involvement in various research stages; initiate contact and begin negotiating a relationship; clarify processes and timelines; and choose appropriate and effective means to communicate research results to communities.  Click here to download.

ITK and NRI. (2007). Negotiating Research Relationships with Inuit Communities: A Guide for Researchers. Scot Nickels, Jamal Shirley, and Gita Laidler (eds). Inuit Tapiriit.  http://www.itk.ca/

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This comprehensive report outlines 58 recommendations that center around seven broad themes. These recommendations help define the involvement of communities in the development and implementation of phase III cancer clinical trials. The report details these recommendations with a full rationale, as well as an extensive appendix, with strategies and resources for implementation.  Click here to download.

The excellent resource provides key strategies for distributing salient findings to affected communities, participant agencies, health departments, researchers, policy makers, and health advocacy groups. Included are practical advice and specific templates you can adapt for your use.  Click here to download.

Courtesy of the Yale Center for Clinical Investigation's Community Alliance for Research and Engagement (CARE)  http://ycci.yale.edu/community/care_main.html

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Organized in a question-and-answer format, this excellent resource describes the conceptual framework for, and processes and steps involved in developing community-engaged research collaborations or partnerships with community- and practice-based clinicians. It includes resources to facilitate this work and address some of the barriers to collaboration. A shorter version of this guide is also available for download on UCSF's Clinical and Translational Science Institute (CTSI) website.   Click here to download.

Courtesy of the University of California San Francisco (UCSF) Clinical and Translational Science Institute (CTSI) Community Engagement Program.  http://ctsi.ucsf.edu/research/community-manuals

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Organized in a question-and-answer format, this excellent resource describes the conceptual framework for, and processes and steps involved in developing community-engaged research collaborations or partnerships with community-based organizations and agencies. It includes resources to facilitate this work and address some of the barriers to collaboration. A shorter version of this guide is also available for download on UCSF's CTSI website.   Click here to download.

Courtesy of the University of California San Francisco (UCSF) Clinical and Translational Science Institute (CTSI) Community Engagement Program.  http://ctsi.ucsf.edu/research/community-manuals

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Ensuring that health care (and health research with diverse populations) is culturally and linguistically appropriate is anything but automatic. The Cross Cultural Health Program offers training, consultation, and resource guides that help health care providers and researchers meet the needs of diverse populations and address health disparities.   

From the Cross Cultural (CC) Health Care Program's Cultural Competency Training Program.  http://www.xculture.org/cctrainingprograms.php

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Describes challenges in 5 areas of Practice-based Research Network (PBRN) research implementation and methods used by the American Academy of Family Physicians National Research Network (AAFP NRN) to address them: (1) selecting fundable, feasible studies that interest members and have the potential to improve quality of care; (2) creating a practical budget that covers the costs of the study; (3) composing study teams and securing written agreements between team members; (4) recruiting and selecting study sites; and (5) training practice staff and physicians.   Click here to download.

Graham, Deborah G., Spano, Mindy S., Stewart, Tom V., Staton, Elizabeth W., Meers, Angela, Pace, Wilson D. Strategies for Planning and Launching PBRN Research Studies: A Project of the Academy of Family Physicians National Research Network (AAFP NRN). Journal of the American Board of Family Medicine. 2007 20: 220-228.   www.jabfm.org/cgi/reprint/20/2/220.pdf

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This link will take you to an online research methods textbook, which provides instruction on both theoretical and applied aspects of the research process. Accessibly written and replete with good examples, the Knowledge Base is suitable for training new staff or brushing up on measurement or basic statistical concepts.   

Trochim, William M. The Research Methods Knowledge Base, 2nd Edition. Copyright ©2006. Internet WWW page, at URL: .  www.socialresearchmethods.net

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The PRISM Readability Toolkit is a comprehensive resource that shows research teams how to create consent forms and other participant materials in plain language Includes a customizable training workshop in addition to the toolkit.   

Courtesy of the Group Health Research Institute (formerly the Group Health Center for Health Studies).  http://www.centerforhealthstudies.org/capabilities/readability/readability_home.html

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The Center for the Advancement of Collaborative Strategies in Health has developed ideas and tools to enhance partnerships, including an adaptable tool to measure strength and cohesion in a given group. The Partnership Self-Assessment tool, scoring instructions and a coordinator's guide are all freely available for download, along with a published article on the concepts underlying synergy.   

From the Center for the Advancement of Collaborative Strategies in Health, Division of Public Health, New York Academy of Medicine.  http://partnershiptool.net/

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This site is designed to guide potential investigators in organizing a clinical research application and to provide information on conducting a study and maintaining an award. Here you will find: an Overview of Human Subjects Research, pre-application Information, Peer Review Details, Funding Information, and more. This site addresses issues most commonly found in grant awards, and also includes glossary links to help to define terms related to NIH funding of clinical research.   

From the National Heart, Lung and Blood Institute (NHLBI) Clinical Research Guide.  http://www.nhlbi.nih.gov/crg/index.php

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This guide was developed to help investigators in the HMO Research Network organize and conduct cluster randomized trials (CRTs). It highlights key planning and operational challenges in multi-site CRTs and offers recommendations for how those challenges should be addressed. Content areas include general considerations and rationale, defining clusters and issues relating to cluster randomization, sample size, informed consent, blinding and other topic requiring special consideration in a CRT.  Click here to download.

From the HMO Research Network Collaboration Toolkit.  www.hmoresearchnetwork.org

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This valuable resource is designed to facilitate dissemination and use of rural health services research findings. The toolkit is very straightforward, easy-to-use and practical reference guide and highlights common methods of packaging and dissemination information that were identified as important by key target audiences (e.g., policy makers, national health related organizations).   Click here to download.

Rural Health Research Gateway [electronic resource]: Disseminating Rural Health Research to State and National Audiences: A Communications Toolkit for Health Researchers / Wendy Opsahl, MA; Amanda Scurry, MS; Mary Wakefield, PhD, RN, FAAN; Patricia Moulton, PhD; Kristine Sande, MBA; Naomi Lelm, BA.  http://www.ruralhealthresearch.org/toolkit/

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From the Examining Community-Institutional Partnerships for Prevention Research Group. The curriculum is intended as a tool for use by community-academic partnerships that are using or planning to use a Community-based Participatory Research (CBPR) approach to improving health. It can be used by partnerships that are just forming as well as existing partnerships. It is intended for use by health professions faculty and researchers, students and post-doctoral fellows, staff of community-based organizations, and staff of public health agencies at all skill levels.   

The Examining Community-Institutional Partnerships for Prevention Research Group. Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill-Building Curriculum. 2006.   http://www.cbprcurriculum.info/

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For those conducting research within practice-based settings, this paper outlines the importance of understanding those settings in advance of preparing a research proposal and provides information about tools and methods used to gather information characterizing information from practices in the Oregon Rural Practice-based Research Network. The survey tools are included in the article appendices and could be easily adapted for use by others.  Click here to download.

Fagnan, Lyle J., Morris, Cynthia, Shipman, Scott A., Holub, Jennifer, King, Anne, Angier, Heather. Characterizing a Practice-based Research Network: Oregon Rural Practice-based Research Network (ORPRN) Survey Tools. Journal of the American Board of Family Medicine 2007 20: 204-219   http://www.jabfm.org/cgi/reprint/20/2/204.pdf

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This thoughtfully constructed resource was developed to help facilitate the formation of ethical, enduring, collaborative and beneficial research relationship between communities and a University. Written on the belief that implementation of the principles outlined will allow for partnerships that reflect mutual respect and cooperation, this document is an excellent example for any one looking to form a new community-academic partnership or strengthen an existing one.  Click here to download.

Courtesy of the Yale Center for Clinical Investigation's Community Alliance for Research and Engagement (CARE).  http://ycci.yale.edu/community/care_main.html

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