Better Tools for Multi-site Research

This thoughtfully constructed resource was developed to help facilitate the formation of ethical, enduring, collaborative and beneficial research relationships between communities and a University. Written with 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 anyone 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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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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The Research Initiative Working Group (RIWG) developed The Working Together model to help guide community-based participatory research in Lawrence, Massachusetts. This diagram depicts the flow of activities in building research partnerships where shared and equal decision making are the goals and where the findings are brought back into the community to create change and improve community conditions.

Click here to download

Lawrence Research Initiative working group of Mayor's Health Task Force of Lawrence, MA. http://lawrencemhtf.org/groups/index.php?group=riwg

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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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The Research Initiative Working Group (RIWG) of Lawrence, Massachusetts developed this set of core principles for research partnerships and list of questions to help guide community-based research partnerships toward best practice. These could serve as a building block for others seeking a 'partnership approach' to research between investigators, community organizations and local government.

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Lawrence Research Initiative working group of Mayor's Health Task Force of Lawrence, MA. http://lawrencemhtf.org/groups/index.php?group=riwg

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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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Columbia University's Clinical Trials Network offers this 'lessons-learned' summary of communications tips and best practices for others working in the context of Clinical and Translational Science Awards (CTSAs) and Practice-based Research Networks (PBRNs).  Click here to download.

Courtesy of J. Thomas Bigger, MD. Professor of Medicine and of Pharmacology and Medical Director, Columbia University Clinical Trials Network.  http://irvinginstitute.columbia.edu/resources/community_engage.html

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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.

Education Network To Advance Cancer Clinical Trials (ENACCT) provides a set of free, web-based, one hour e-learning courses for patient advocates and community leaders, as well as primary care providers to learn about promoting and discussing all treatment options, including clinical trials, for individuals diagnosed with cancer. Participants learn about the risks, benefits, and barriers to cancer clinical trials participation. A course for cancer clinical trial staff teaches how to promote greater access to and participation in cancer clinical trials, especially for minorities and the medically underserved. It emphasizes cultural competence within the clinical research setting. The principles taught in these courses may be relevant to all clinical trials, not only cancer-related trials.   

From the Education Network To Advance Cancer Clinical Trials (ENACCT).  www.enacct.org/training-programs/healthcare-provider-training

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This manuscript describes survey findings relating to barriers to physician participation in cancer control trials among oncologists, oncology leaders, and health plan leaders. Predictors of participation, essential infrastructure and support needs, and other important factors are discussed.  Click here to download.

Somkin CP, Altschuler A, Ackerson L, Geiger AM, Greene SM, Mouchawar J, Holup J, Fehrenbacher L, Nelson A, Glass A, Polikoff J, Tishler S, Schmidt C, Field T, Wagner E. Organizational Barriers to Physician Participation in Cancer Clinical Trials. American Journal of Managed Care. 2005 11(7): 413 - 421.  http://www.ajmc.com/media/pdf/AJMC05julSomkin413to421.pdf

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This interactive Research Ethics Training Curriculum was developed for international researchers who conduct research that includes human participants and want to incorporate fundamental ethical considerations in design and implementation of their research. The curriculum offers international researchers an overview to the development and philosophy of research ethics; case studies; materials to assist in designing studies that respect local regulations, cultures and expectations, and ancillary reference documents on modern perspectives that shape the research ethics field.  

From Family Health International.  http://www.fhi.org/training/en/Retc/intro.htm

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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; 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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An example of a policy developed by the American Academy of Family Physicians National Research Network (AAFP NRN) to facilitate collaboration with others. This document describes basic principles followed when conducting research funded by industry sponsors - including overarching guidelines, statistical analysis, publication, research grants and collaborative projects, and intellectual property.   Click here to download.

Courtesy of the American Academy of Family Physicians National Research Network (AAFP NRN).  http://www.aafp.org/online/en/home/clinical/research/natnet.html

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Expectations for collaboration between a Practice-based Research Network (PBRN) and an investigator external to the Network are clearly laid out in the this example of an external PI agreement - including how and by whom the research agenda of the network is set, grant budget support expectations and approval mechanisms, collaborative conduct, financial responsibilities and authorities of the PBRN director, and expectations for dissemination of research findings.   Click here to download.

Courtesy of the American Academy of Family Physicians National Research Network (AAFP NRN).  http://www.aafp.org/online/en/home/clinical/research/natnet.html

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An example of an MOU that formalizes expectations and agreements between an existing PBRN and a new practice joining the Network.   Click here to download.

Courtesy of the North Texas Primary Care Practice-Based Research Network.  http://www.hsc.unt.edu/NorTex/

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Several examples of MOUs used to codify partner relationships in community-based participatory research are available on this site.  

From Community-Campus Partnerships for Health (CCPH).  http://depts.washington.edu/ccph/commbas.html#MOU

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 Web site with many resource links allowing exploration of and training for cultural awareness in health care, including tools for teaching cultural competencies, patient information resources, topic-relevant professional associations and book titles, links to journals focused on cultural diversity and health care, and more.

From Dartmouth College Library. http://libguides.dartmouth.edu/content.php?pid=45470

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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.  http://www.xculture.org/Reccommendedlinks.php

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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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