Section 6: How Do I Get Started?

Some of the largest federal and independent funders, including the National Institutes of Health (NIH) and Patient-Centered Outcomes Research Institute (PCORI), are supporting researchers who engage in CEnR and elevating non-traditional partners as equals in the research process. If you are just starting out, there are several available Penn State institutional funding mechanisms to provide mentorship, salary support and connections with the community as you embark on your CEnR research. These pipeline grants pave the way for larger funding opportunities in CEnR endeavors.

“Being a partner on the research project was an interesting, enjoyable and life-changing experience. The team helped us feel needed, engaged us in every project and always valued our opinions.”
– Patient partner, PaTH to Health: Diabetes study

One of the most important decisions a research team makes in the CEnR process is identifying a community partner(s) for the project. Following specific guidelines early in the team building process can establish a foundation of trust for a mutually satisfying and beneficial collaboration between researchers and community partners.

Steps for Building Teams in CEnR

Additional considerations

• It is important that research teams and community partners not only consider their mutual interests and benefits in a proposed research partnership, but also their differences in perspectives, agendas and needs before agreeing on a collaboration.³⁶
• It is suggested that researchers begin steps for building their teams at least six months before the start of the research project to ensure team-building decisions are given plenty of time and consideration.³⁷ Forming partnerships well before the research commences also allows the opportunity for community perspectives to be integrated into the research proposal development to ensure patient-centered relevant objectives and outcomes.
• Potential community partners may be more interested in and willing to work with research and education teams from organizations with which they have had positive connections and interactions in the past.³⁵ Let our community engagement team help to determine if existing Penn State connections might be a fit for your work. Contact us at: CHEER@pennstatehealth.psu.edu.

There are numerous educational resources and trainings to support your broader understanding of CEnR methodology and engagement best practices. Here are a few to pique your interest!

• PCORI: Building Effective Multi-Stakeholder Research Teams provides guidance and resources on how to create an inclusive team environment as well as best practices for working cooperatively together to increase productivity and impact on the research.
• University of Minnesota Clinical & Translational Science Institute Training modules: Equity-grounded community-engaged research
  • Learn how to pursue a community-academic research partnership that drives meaningful change.
  • By working together, you can help create a healthier, more equitable future.
  • Start the free course here
• Johns Hopkins Institute for Clinical & Translational Research Nuts and Bolts Training on Community Engaged Research
• VICTR – Vanderbilt Institute for Clinical and Translational Research Community Engaged Research Training for Researchers offers a free seven-part online training series, covering the following topics and learning objectives:
  • Cultural humility
    • Participants will increase their knowledge of the multitude of factors that inform culture.
    • Participants will increase understanding of the principles of cultural humility.
    • Participants can identify personal beliefs and values and how these factors influence their own behaviors on co-worker and patient relationships\
  • Overview of community-engaged research
    • Define community engagement.
    • Describe the community-engaged research continuum.
    • Identify barriers and benefits to community-engaged research.
    • Tips for engaging in effective community-engaged research efforts.
  • Community engagement and ethics
    • Describe the community-engaged research continuum.
    • Highlight the basic principles of research ethics and their relevance to community-engaged research.
    • Identify factors that may influence an ethics review of a community-engaged research project.
  • Building sustainable partnerships
    • Examine what partnerships between community organizations and academic researchers need to succeed.
    • Identify tools that promote trust and manage conflict in partnerships.
• Mayo Clinic Center for Clinical and Translational Science (CCATS) Community–Engaged Research and Health Disparities Research Online Modules offer free, self-paced trainings on foundations of CEnR, overcoming barriers and measuring readiness.
  • This curriculum includes the following content:
    • “Community-Engaged Research: An Overview”
      • Learners gain insight into the differences between CEnR and traditional research. This module provides details on the components needed to begin a community engagement in research collaboration. Upon completion of this module, participants will be able to:
        • Define CEnR.
        • State the differences between CEnR and traditional research.
        • Describe the components included in CEnR.
    • “Community-Engaged Research: Foundations of Community Engagement in Research”
      • This module provides details on opportunities to expand beyond traditional research practices to include diverse end users and stakeholders at the research table. Upon completion of this module, participants will be able to:
        • Define the clinical and translational science gap.
        • Identify their potential roles in CEnR.
        • Identify community resources in CEnR.
    • “Overcoming Barriers in Community Engagement in Research”
      • Researchers and their collaborative stakeholder partners have an invested interest in meeting unmet health care needs. Community engagement in the research process may include the introduction of unforeseen barriers that can impede the success and sustainability of the research project. This module identifies strategies to overcome these barriers.
    • Are You Ready? Measuring Readiness and Preparing to Engage”
      • Determining how to apply levels of engagement with stakeholders is critical to the success of a CEnR project. This module provides an overview and resources to help participants gain awareness, prepare, implement, disseminate and maintain stakeholders’ engagement throughout the research project.
• CITI, the platform that you currently access to complete your required Human Subjects Protection training, also offers relevant CEnR elective modules:
  • Introduction to Community-Engaged Research (CEnR) (ID 16994)
  • Introduction to Community-Based Participatory Research (CBPR) (ID 16995)
  • Ethical and Practical Considerations in Community-Engaged Research (CEnR) (ID 16996)
• Harvard Catalyst, Center for Leading Innovation and Collaboration, Harvard Course: Community-Engaged Research offers an online course (fee associated) designed for both researchers and community members. This course will help researchers like you build trusting relationships with the community while preparing community partners to engage in health research.
  • Course Goals
    • Prepare community partners and researchers for effective collaboration
    • Explore the range of community-oriented research aims, concepts, tools, and practices
    • Share with and learn from co-participants in the course, with discussions delving into common preconceptions, experienced challenges, and ideas for fostering trust and mutual support

CHEER also offers educational learning opportunities where you can learn from your mentors and peers in real-time to gain insights into how to overcome barriers and implement successful strategies within community-academic partnerships.

Our community partners need training too and we have that covered! We have worked in partnership with the Human Research Protection Program (HRPP) at Penn State to offer the CIRTification (Community Involvement in Research) Training, originally developed by the Center for Clinical and Translational Science at the University of Illinois, Chicago.¹⁹ This is an excellent and comprehensive lay research ethics training offered to community partners freely available in an interactive online format. This roughly four-hour training is appropriate for community partners who will be integrally involved in the research (required for any non-Penn State partner with direct access to patients/participants, identifiable data collection and analysis in expedited or full board review studies) but is also recommended for all partners to learn about important topic areas within research. Please refer to the HRP-508 Individual Investigator Agreement found in the CATS library (irb.psu.edu) for specific information regarding this training alternative or visit the instruction page here.

“Community partners are critical to ensuring our clinical and translational research is relevant to those we serve through our land-grant mission. CIRTification, as a community-friendly human subjects training alternative, is an important step to ensuring our stakeholders’ voices are at the table. We are grateful for our HRPP partners for standing up this valuable tool as an option for our research teams.”
– Jennifer L. Kraschnewski, MD, MPH, Director, Penn State CTSI

“The knowledge that I’ve gained listening into the calls and the experiences that they share, I can go and share that with other people that I know to get them engaged and become proactive in their health and wellness.”
– Patient partner, PaTH to Health: Diabetes study

Community partners can be involved in various aspects of the research process from proposal development through dissemination of research findings back to their communities. The CHEER team is here to provide you with support and trainings along the way to cultivate impactful partnerships both on your current research and beyond.

Keep in mind that successful partnerships, just like other relationships, take time to grow. The CHEER community engagement team can help speed up this process by connecting you with partners already interested in collaborating with Penn State teams. If possible, getting to know the community in which you would like to perform your research FIRST and opening a dialogue about what matters to them can not only increase the likelihood that they will be receptive to your research, but can also bolster your research recruitment, methodology and dissemination approaches. It is often through a platform of sharing and bidirectional communication that research priorities are identified and the seeds of partnerships are sowed.

Check it out!

Recruitment can be a challenging phase of research. By leveraging the connections you’ve made with your community partners, you can successfully meet your goals! Check out the following toolkits for resources and tips to develop and implement your recruitment methodology:

Successful Research Recruitment: A Toolkit for a Community-Based Approach

Trial Innovation Network Recruitment Innovation Center (RIC) Recruitment & Retention Materials Content + Design Toolkit

RIC Recruitment Materials Study Website Toolkit

The Multi-Regional Clinical Trials (MRCT) Center of Brigham AND Women’s Hospital and Harvard – Achieving Diversity, Inclusion, and Equity in Clinical Research Toolkit

All recruiting materials need to be reviewed and approved by the IRB.

Check out CTSI’s Research Recruitment Toolkit for successful recruitment approaches and self-service, downloadable recruitment materials.

Researchers can implement robust communication tools to establish and maintain strong connections with their community partners. Utilizing these resources helps create transparent, streamlined communication systems that foster trusting, collaborative partnerships. Some evidence-based communication tools to consider include the following:

Targeted Stakeholder Agendas are a great organizational tool to establish collective expectations throughout study meetings that will enhance discussions, brainstorming and feedback. By sending these out at least one week in advance of the meeting, community partners can come prepared with specific feedback to enhance study discussions.²⁴

Example of a targeted stakeholder agenda

Virtual meetings are a good solution to overcoming barriers for community partners geographically dispersed or with mobility limitations. Not only are virtual meetings convenient, they also enhance diversity, equity, inclusion and accessibility (DEIA).^38,39

Additional resources for planning and facilitating virtual meetings:

• Virtual meetings promise to eliminate geographical and administrative barriers and increase accessibility, diversity and inclusivity
• Making Meetings Inclusive and Accessible

Newsletters are an effective tool to share interim study updates, progress and highlight stakeholders’ contributions to the project. They are a great way to keep community partners informed of the research, especially if you meet infrequently (e.g. quarterly or biannually). Newsletters can also serve as a great resource for study participants to maintain momentum and adherence to the research. In being good stewards of the research, it’s important we’re not only keeping the lines of communication open with our community partners but our research participants as well – without them, the research wouldn’t be possible!

Example newsletter

• Download an example newsletter [PDF]

Lay dissemination briefs translate results findings published in scientific journals to a broader community, thus creating and maintaining a foundation of trust for partnerships to flourish and thrive. Funders now more than ever are requiring investigative teams to share results with study participants. These simple and illustrative one-pagers provide lay translation of study results back to communities – it’s a wonderful tool to close the loop!⁴⁰

Example of a two-page lay dissemination brief

• Download a sample Lay Dissemination Brief [PDF]

A visual abstract is also an effective tool to disseminate research results more broadly, and is gaining traction at scientific meetings. Consider a poster presentation that contains way less words and way more graphics! Infographics are an effective evidence-based method to disseminate research findings to community members and researchers alike.⁴¹ Not only are these exciting visual aids easy-to-understand, they are fun to create!

Source: Image created by JMIR Publications/Authors; Copyright: JMIR Publications; License: Creative Commons Attribution (CC-BY)

Download a sample Visual Abstract

Community partners may also be interested in assisting with scholarly activities, such as manuscript writing and oral/poster presentations at conferences and we encourage this! We advise teams to follow the International Committee of Medical Journal Editors (ICMJE) Authorship Guidelines.

Since community engagement in research has gained significant traction in research years, there are lots of “homes” for your important work! Below are a few to consider:

• ACTS: Association for Clinical and Translational Science
• PCHP: Progress in Community Health Partnerships: Research, Education and Action
• Health Education and Behavior
• Research Involvement and Engagement
• Health and Social Care in the Community

You’ll also see top-tiered medical journals accepting community-engaged articles so think outside the box!

We know publication costs can be a barrier – thankfully, there has been increased momentum to move towards Open Access (making your important work freely available), with Penn State University Libraries partnering with several big publishers to either discount or fully waive publication costs!

Funders often require CEnR researchers to provide feedback about approaches to engagement, challenges and resolutions during partnerships and subsequent impact on the research process. They may request data about stakeholders’ experiences in a CEnR project to assess levels of outreach and education, consultation, cooperation, collaboration and partnership.

Aside from reporting requirements, when teams carve time out to reflect on their current approaches to engagement it allows opportunities for tweaking and improving processes that can lead to a more engaged team, which in turn can positively impact the research. Throughout engagement, formative and process evaluations can be utilized to evaluate how partnerships were formed, maintained and their ultimate impact on the research. This can elucidate if the appropriate community members or organizations are included, whether participants feel their feedback is implemented to enhance the research and how engagement practices are shaped and sustained. Following completion of the CEnR project, evaluation may examine its immediate outcomes, summative impact or sustainability beyond the project scope.²

The Clinical and Translational Science Awards Consortium Community Engagement Key Function Committee Task Force on the Principles of Community Engagement (Second Edition) has developed example questions to ask when evaluating community engagement:^2,43-44

• Are the right community members at the table? This is a question that needs to be re-assessed throughout the program or intervention because the “right community members” might change over time.
• Do the process and structure of meetings allow for all voices to be heard and equally valued? For example, where do meetings take place, at what time of day or night and who leads the meetings? What is the mechanism for decision-making or coming to consensus; how are conflicts handled?
• How are community members involved in developing the program or intervention? Did they help conceptualize the project, establish project goals and develop or plan the project? How did community members help assure that the program or intervention is culturally sensitive?
• How are community members involved in implementing the program or intervention? Did they assist with the development of study materials or the implementation of project activities or provide space?
• How are community members involved in program evaluation or data analysis? Did they help interpret or synthesize conclusions? Did they help develop or disseminate materials? Are they co-authors on all publications or products?
• What kind of learning has occurred, for both the community and the academics? Have community members learned about evaluation or research methods? Have academics learned about the community health issues? Are there examples of co-learning?

Evaluating engagement methodologies in research is an emerging area of inquiry and significant evidence gaps remain. The Patient-Centered Outcomes Research Institute (PCORI) has funding mechanisms to advance our understanding of best practices for stakeholder engagement and the development of validated measures of structure/context, process and outcomes of engagement. Check out PCORI’s funding opportunities related to the Science of Engagement.

Researchers may be concerned about anticipated challenges to community collaboration. Maintaining an effective partnership over the course of a community-engaged research study requires thoughtful consideration of the day-to-day functioning of a community partner’s organization or personal responsibilities. Building trust with community partners requires an understanding of the challenges and barriers that may be presented with the addition of a research project to their professional tasks or other role(s) within the community. Careful planning and communication can often address these challenges, but common pitfalls to community-engaged research can still exist.46 Below are some common challenges often experienced in CEnR projects along with strategies to avoid and/or mitigate these potential obstacles:

Lack of understanding of true community needs

An investigator may make a unilateral decision about how an intervention may solve a community health need but this may not align with true priorities of the community.^46-48

• Let’s address it! The best opportunity to get to know the community is before the research begins. Too often, researchers will come into a community to conduct their research and then leave. However, by opening up the dialogue with the community early on to identify what their research priorities and concerns are, you will be well-positioned to enhance not only your research but the relationships that ultimately support your research.

Tokenism

Sometimes without realizing it you may be “check-boxing” engagement efforts to meet funder requirements but community partners will be less likely to contribute to your project if they do not feel valued. As participants in CEnR, community partners may expect to have particular role(s) in the project and will want (and should have!) their “voices” heard. You may be challenged with how to show partner value.⁴⁹

• Let’s address it! It’s important to cultivate a partnership that is based on genuine intent and trust. Come to the ‘table’ ready to listen. Allow community partners to share their concerns, remembering that their input is valuable to the overall project. Remain authentic in your engagement approach by seeking and utilizing partner feedback and experiences. Utilize our “Closing the Feedback Loop” documentation (Appendix H) to demonstrate the valuable feedback shared from community partners and subsequent implementation with the overall goal of improving the research.

Lack of knowledge, skills, training

There will likely be a learning curve for community partners, especially if it is their first time collaborating on a research study. They may not be as familiar with the myriad technical and ethical aspects of research conduct. Power dynamics can also be at play.^46-48

• Let’s address it! Level the playing field! The CHEER team encourages all community partners to complete a lay research ethics training, CIRTification (Community Involvement in Research), to provide a foundation of core research processes and underlying ethical considerations that they may encounter during their partnership on the research study. CHEER supplements this foundational training with several targeted Just-In-Time workshops and webinars. Have a particular training topic that you would like to see offered to your community partners? Let us know! Email: CHEER@pennstatehealth.psu.edu

The need for additional resources

Additional time, staff, training and other administrative resources may be necessary to complete the research project. Community partners may be limited in their ability to participate if these present organizational obstacles, including financial limitations.^46-48

• Let’s address it! Think ahead and allow for comprehensive planning. Conduct a full assessment of the study’s needs and requirements, including what you have committed to your funding source. Recognize limitations early on so these may be addressed at the start of the project. If you are planning to engage with community partners and this is written into your proposal, ensure you have asked the CHEER team how you might anticipate and allocate engagement resource needs during your budget preparation. If you need to hire additional staff, we have job descriptions that can be tailored to meet the roles and responsibilities of your team members!

Conflicts among partners

Academic and community partners have separate and distinct organizational hierarchies to consider. Collaboration under the goal of a research study may reveal a clash between organizational cultures and decision-making structures. Further, academic partners and community partners may need to adhere to organizational, local and/or federal requirements that are not in sync. Community partners are not inherently familiar with the structure and academic requirements associated with a research project. Similarly, researchers are not always well-versed in the inner workings of a community partner’s organization and culture of service delivery. As such, researchers and community partners alike may be unfamiliar with, and unprepared for the demands associated with their individual areas of work. This can result in a conflict in service provision and/or fulfillment of research goals. In addition, a researcher’s priority of the study may not align with the priorities of the community partner(s). Competing agendas could present challenges to the project, ultimately impacting the focus of the study, associated research activities and overall time required to complete the project.^46-48

• Let’s address it! Discuss the priorities, interests and needs of all stakeholders during initial planning meetings. Collaboratively decide on the study’s purpose and create an estimated timeline for study phases. Evaluate and discuss both the finite and nuanced role(s) in their organization, and how those may or may not merge with your decision-making processes. Establish clear expectations and appropriate professional boundaries of each member of the research team, both verbally and in writing. Cultivate an environment where researchers and community partners utilize open and transparent communication should challenges arise.
  Utilize Penn State’s Clinical and Translational Team Science Toolbox for evidence-based conflict resolution strategies.

The CHEER team at the Penn State College of Medicine recognizes the impact that research and education teams have in making individual lives better and communities stronger by reducing health disparities. Our team is here to support researchers by offering a variety of training options and resources to best develop beneficial community-academic partnerships that have meaningful, real-world outcomes.

CHEER can help research and education teams:

• Frame competitive funding proposals with increased focus on developing sound engagement plans.
• Identify community partners interested in participating in CEnR.
• Cultivate community partnerships that are based on trust, integrity and mutual respect.
• Understand guiding principles unique to CEnR.
• Develop and manage the steps of creating and implementing a CEnR project.
• Establish clear roles and boundaries during partnership formation.
• Determine the best CEnR relationships to meet the needs, desires and interests of the community.
• Provide guidance for best practices related to lay dissemination of results.²

Our team can be reached at: CHEER@pennstatehealth.psu.edu. We look forward to working with you!

“The strengths of Penn State is like a gift yet to be unwrapped by the community. Once others are engaged and offered the opportunity for growth, they too will be surprised by the promise of a brighter tomorrow from the knowledge of yesterday.”
– Bonnie Kent, community team member, Community-Engaged Research Core, Penn State CTSI