Ensuring Community Co-Creation Throughout the Research Process: Tips for Researchers

Purpose

This resource was created in response to the ongoing risk posed by research practices that draw data, knowledge, or insights from a community when community engagement or collaboration is limited or absent (also referred to as “extractive practices”). It is intended to support academic and research partners seeking to better operationalize community-engaged principles and ensure communities are meaningfully involved in the research.

Recommendations

Setting Up Systems: Establish Balanced Decision-Making Structures

• Empower community partners by developing co-leadership positions, steering committees, and consensus-based processes that provide real influence over key decisions. 
  • Doing so ensures that decision-making is more balanced, community perspectives shape the research, and outcomes are relevant and supported by those affected. 
  • To implement this, clearly define roles and responsibilities for all leaders, establish regular meetings where all partners have a voice, use consensus or shared decision-making methods, and provide training or support so partners can participate fully.
• This approach builds trust, strengthens collaboration, and increases the impact and acceptance of the research.

• Reflection Questions: Who currently holds decision-making power in your research process, and who is excluded from those decisions? Are you someone who can change the structure or advocate for it?

  Think about who usually sets the agenda and makes final decisions throughout your project. Does one person or group consistently have the last word? If so, this may signal a power imbalance that can undermine ethical practice. Consider your partners, current decision-making methods, and where you could start to gain support.

Defining the Goals: Engage Communities Early to Shape Research Priorities

• Work with community partners to define priority issues and co-create goals, rather than imposing predetermined academic questions.
  • Conduct community listening sessions, photovoice workshops, community needs assessments, or storytelling to help ensure the research reflects community priorities and lived experiences.
• By actively engaging partners to translate their concerns into clear objectives, you share power in “setting the research agenda” — strengthening trust and the relevance of the work.

• Reflection Question: Try to identify a research goal that was specifically suggested by a community partner, member, or patient. Was that goal retained in the project, or was it removed or altered?

  Consider whether goals suggested by community partners, members, or patients are truly included or overridden by academic priorities. Reflect on how power, time, or funding may affect these decisions. To promote reciprocity and relevance, document and discuss community-identified goals early, and ensure partners understand how decisions about goals are made.

Conducting Research: Value Lived Experiences and Knowledge Equally

• Recognize that when conducting research with a community, community partners are the knowledge holders whose lived experiences provide essential context, nuance, and cultural understanding.
• You are entering their community — where they live, play, pray, and work. Assuming you know what is best for them will not build trust, relationships, or culturally relevant research.
• Work with community partners to understand and practice appropriate ways to engage their community and leverage their existing networks to build and maintain trusting connections.
  • Remain transparent about the research process, and use continuous-feedback loops to ensure ongoing communication and accountability.

• Reflection Question: In what ways do you rely on community expertise to guide decisions, and how do you ensure community partners continue to shape the work throughout the process?

  Reflect on how lived experience informs your approach. Consider when community partners or members are currently invited into the research and whether they could be engaged earlier. Review how you report back to them when their expertise influences decisions. Transparent, timely feedback is essential for building and maintaining trust. Assess whether your approach is accessible, acknowledges contributions (including positive insights and difficult feedback), clearly shows how their input shaped the work, and keeps partners informed throughout the project.

Returning Results to the Community: Promote Reciprocity and Avoid Extractive Practices

• Foster trust and empower communities by co-creating reciprocity goals for both sides of the partnership.
  • Beyond compensation, researchers can provide resources and assistance, capacity building and training, data access and ownership, and other solutions that address the individual and local needs, ultimately building support for the project.
• Community members must feel they are a part of something bigger and more impactful, rather than another funded research project.

• Reflection Question: In what ways does your research give back to the community, beyond compensation or academic outputs?

  Assess your engagement with community partners and community members. Have you offered training, hired community researchers, shared data in accessible formats, or invested in local initiatives? Are there other ways that you have ensured the relationship is not extractive but reciprocal and mutually beneficial? Have you asked the community what they would like to gain from the research project?

Call to Action

Move from conducting research on communities to conducting research with communities by sharing power, valuing lived experience, and building reciprocal partnerships at every stage of the work. This shift strengthens science and leads to outcomes that truly matter to those most impacted.

Key Terms

Community-engaged research: “Community-engaged research (CEnR) is the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people (PennState CTSI, CEnR Toolkit, Section 2*).”

Co-creation: Co-creation is a participatory, collaborative design approach used in public health that brings researchers and community partners together to understand complex problems and design solutions, helping make health research and interventions more relevant, acceptable, and effective (Public Health Research and Practice*).

This resource was developed by CEACR, as part of a webinar supported by the NIH Common Fund. The development of this resource was funded by NIH CEAL under contract number OT2HL158287. The opinions expressed are those of CEACR and do not represent the official views of, nor an endorsement by, the NIH, the U.S. Department of Health and Human Services, or the U.S. Government.

Requests for CEACR services can be made at https://redcap.link/consultrequest*