Community engagement and collaboration is part of the fabric of Penn State. An integrated approach is essential for effective clinical and translational science. Community involvement in all phases of research can help to ensure that new treatments and health discoveries are more effective and meaningful for those it is intended to reach.
These tools for researchers includes resources geared specifically towards working with patients, advocates and community members and organizations to improve and enhance research. The toolkit also includes ways to partner with the community to participate fully throughout the research process.
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Resources for Researchers
Collaborative Institutional Training Institute (CITI) Program offers three elective community-engaged research modules. The modules, which were developed, authored and reviewed by researchers, community partners and institutional review board representatives, provide learners with increased knowledge and understanding in order to participate in research partnerships and communities.
These modules are found under the Protection of Human Research Subjects – Biomedical Course – Basic Course. Scroll down to the optional modules.
- Ethical and Practical Considerations in Community-Engaged Research
- Introduction to Community-Based Participatory Research
- Introduction to Community-Engaged Research
These modules are a result of a collaboration between the CITI Program and the Harvard Catalyst Community Engaged Research Subcommittee.
Penn State Clinical and Translational Science Institute provides community-centered translational science infrastructure that builds on existing networks of community engagement already in place at Penn State and focuses on the development, implementation, evaluation and diffusion of evidence-based interventions. As part of the services, the Community-Engaged Research Team provides consultations to members of the Penn State community.
What can a consultation include?
- Assistance establishing a research project within the community
- Assistance to identify stakeholders who can provide input at all stages of research from conceptualization and discovery to dissemination
- Guidance in selection of approaches for community engaged health research (CEHR) that promote trust and benefit all parties
- Research project design involving interdisciplinary teams and community partners
- Community-based research approaches and protocols that effectively engage stakeholders in urban and rural settings
- Support coordination among community members, health care providers and research scientists
- Identification of needs and priorities for health-related research in Central Pennsylvania communities
- Tools for increasing diversity of community member participation in health research through awareness and involving community members in the development of effective recruitment, retention and dissemination strategies
- Assistance with patient and stakeholder engagement for Patient Centered Outcomes Research Institute (PCORI) applications
Who is eligible for a consultation?
Consultations are open to members of the Penn State community. Consultations are required for all Clinical and Translational Science funding recipients.
How much does a consultation cost?
Consultations are free.
How do I request a consultation?
Complete a service request form. In order to provide sufficient time for scheduling, the Community-Engaged Research Core requires at least two weeks notice to schedule a consultation prior to a grant submission. Requests received with less than two weeks noticed may not be honored.
What is a Community Engagement Studio?
The Community Engagement Studio is a one-time, 90-minute meeting where community members give feedback and advice to improve upon investigators’ research projects. A studio provides a cost-effective and time efficient method to engage patients and stakeholders to enhance current research practices and improve upon dissemination.
Why participate in a Community Engagement Studio?
- Gain valuable feedback on a research concept or study design before spending valuable time and resources.
- Engage stakeholders and patients to enhance current research practices and improve dissemination.
Does a Community Engagement Studio require IRB approval?
No, the studio is not considered research. It is a process to inform the development, conduct or dissemination of research. The participants in a studio are not considered research subjects but community advisors.
What does a Community Engagement Studio cost?
Community Engagement Studios are supported by Penn State Clinical and Translational Science Institute and free to Penn State researchers. However, researchers are encouraged to include studio costs in their future grant proposals. Studio community members are compensated for their time.
What is the time commitment required?
Community engagement studios provide significant benefit for minimal investment of time. On average, researchers spend less than four hours of their time preparing for and participating in a studio. After contacting the Clinical and Translational Science Institute, researchers will meet with the studio team for an initial planning meeting (one hour), preparing the presentation (one hour) and attending the studio (two hours).
How do I get started?
Penn State Clinical and Translational Science Institute’s Community Engagement Studio is adapted from the Meharry-Vanderbilt Community Engaged Research Core.
The Community-Partnered Research Ethics Training (CPRET) course is an interactive training tool covering important issues in human participant research and ethical guidelines that embody best practices through scenarios, role plays, and group discussion of relevant study-related topics. Patient partners that are part of a study’s Advisory Board are then eligible to become Co-Investigators on the study, officially recognizing the valuable role they play in community participatory research.
What is CPRET?
A great way to enhance the partnership between researcher and community member and also improve stakeholder engagement in key research milestones is through the Community-Partnered Research Ethics Training (CPRET) course. This training program, originally developed by the University of Pittsburgh’s Clinical and Translational Science Institute, is approved by Penn State’s Institutional Review Board as an ethics training tool for community partners engaged in research activities within Penn State. The training covers important issues in human participants research and the ethical guidelines that embody best practices through an interactive format, including scenarios, role plays, and group discussions.
Why does this type of training matter?
A key benefit of this program is that it avoids a “one size fits all” training format and instead provides the ability to tailor ethical issues in the context of the research the community member is participating in. Therefore, the training can be modified to ensure project relevance and hone in on key concepts, rather than a blanket training that reduces applicability. By providing a deeper understanding of ethical issues that may arise in a specific research study community partners are engaged in, they are better positions to ensure the protection of human subjects and handle situations ethically. In addition, post-training certification enables community members to become official Co-Investigators on the study, thus recognizing the valuable role stakeholders play in community participatory research.
Where can I access the CPRET training?
Provided in the toolkit are sample Powerpoint training presentations, guidelines for tailoring scenarios, feedback and evaluation forms and certifications, among other resources.
How do I get started?
As investigators begin to tailor the scenarios provided in the CPRET PowerPoint template, they will need to consider the level of involvement community partners will have in each phase of the research. For example, will community partners help with recruitment efforts and/or patient consent? Will they have access to patient health data? These inquires will help guide the adaption of the training tool to best meet the needs of the community partners and enhance training relevance.
Allowing for flexibility in its design, investigators have the ability to tailor scenarios and role play based on project specifics. This results in meaningful discussion and helps with the transfer of knowledge. Scenarios and role play should cover key ethical principles (i.e., respect for persons, beneficence, justice).
Once research teams develop tailored scenarios the Principal Investigator must approve them, however, no other further approvals are required from the IRB or elsewhere. Roleplay activities can also enhance the training program and should be provided in an appropriate and relevant context. For example, if community partners will be providing consent to patients in the research study, including a role play of the informed consent process during the training and discussing ethical considerations would be applicable.
How long does the training take?
Delivery of the CPRET can be effectively completed in one to one and a half hours, depending on the size of the audience. This will allow for meaningful interactions and discussions surrounding key concepts while leaving ample time for questions/answers.
Once community partners have completed the CPRET program, they can receive a certificate, a template for which is provided on the University of Pittsburgh’s CPRET page. In addition, if they will be engaged in key research milestones such as recruitment, informed consent, data analysis, etc, they can be listed as co-investigators on the research study. Research teams would need to complete a modification to the IRB to add these community members to the study and also provide an attendance record as proof they underwent the training.
It is important to collect data on how useful this training is to community-engaged research groups. Post-training, community members can complete an evaluation to capture their thoughts on the training. A sample of this is provided through the University of Pittsburgh’s CPRET website. Training facilitators (the research team) can also evaluate the CPRET by completing a similar form. These can be submitted to the IRB so the program may enhanced in the future.
When providing CPRET training to community members, be sure to credit the individuals at the University of Pittsburgh who developed the CPRET. TO do so, include a slide recognizing these efforts:
Developed by the University of Pittsburgh
(Michael Yonas, Elizabeth Miller, Maria Catrina D. Jamie and Shannon Valenti)
Adapted by Penn State Health
(List Penn State research team members here)
Additionally, on each PowerPoint Slide, include credits below:
Adapted from Version 1.0
Copyright 2014, University of Pittsburgh. All Rights Reserved.
This work is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License
After a community stakeholder team has been formed, it is important to get to know them and gain an understanding of what their backgrounds and experiences are in a research context, either as a participant, community partner or other exposure. This will help the research team identify knowledge gaps and provide future trainings in key research activities to enhance engagement throughout the study. An effective way to collect such data is to conduct a needs assessment at the beginning of the project.
Some sample questions are provided here.
- Have you ever participated in a research study before?
- If yes, what was the study about? Explain your involvement.
- Do you feel you benefited by being a part of the study? If so, explain why.
- Was this a positive or negative experience for you? Please explain.
- Why did you become a community partner?
- Have you participated in other studies as a community partner?
- If yes, how do you feel you were best engaged in the process? Least engaged?
- What matters most to you in a research study?
- What are you most interested in learning over the course of your involvement on the current project?
- How do you see yourself making a difference in this project?
- How do you best learn? Visual (learn by seeing), auditory (learning by hearing) or kinesthetic (learn by doing)?
The mentored Faculty Fellowship Program provides funding for a Penn State faculty member for up to a total of two course buyouts (one per semester) or .10 FTE of clinical time over the course of one year for study and training in community-engaged research with the guidance and support of a mentor, identified by the fellow, who has agreed to provide mentoring.
The fellowship is for
- researchers already engaged in time- and resource-demanding community-engaged research; or
- early-career researchers and advanced trainees desiring hands-on experience and mentoring in the science and practice of community-engaged research.
We are happy to provide a letter of support or language to include for grant applications that are planning on using community engagement.
Letters of support are subject to review, editing and approval and will typically be signed by the Co-Leads of the CTSI Community Engagement Research Core.
To obtain a letter, email email@example.com.
There are many other resources to consider when striving for community engagement. Please note: The inclusion of resources and websites on this list does not constitute endorsement.
Principles of Community Engagement (Second Edition)
Principles of Community Engagement (Second Edition) provides public health professionals, health care providers, researchers, and community-based leaders and organizations with both a science base and practical guidance for engaging partners in projects that may affect them.