Implementation Checklist for Community-Based Participatory Research
Projects in Health Informatics
Principle 1: Understanding the existing strengths and resources within the community.
❏ Determine how the “community” is defined, including identifying its boundaries.
Tip: Start with the community-based organization’s service catchment area, user base or
audiences.
❏ Identify people within the community who have relevant roles skills and experience, and
invite them to participate in early dialogue about the project.
Tip: Identify community leaders, people with technology expertise, and people with
community engagement experience at both academic and community organizations.
❏ Get to know community members, students and university staff before assigning them to
permanent roles in the project. Ensure that assignments/roles reflect the demonstrated
strengths of the people involved.
❏ Conduct an inventory of available community and university resources that might be
leveraged in a project, in early stages of the project.
Tip: Resources to consider include a wide variety of physical assets (meeting space,
research space), communication tools (newsletters, social media accounts), personal
skills/knowledge (meeting facilitation, knowledge about the community), existing
community events or services (support groups, yearly back-to-school celebrations), and
technology infrastructure (software, online survey accounts, hardware).
Principle 2: Empowering both academic and community partners through co-learning
opportunities, with awareness of social inequalities.
❏ Choose decision-making model(s) that allow both academic and community partners to
contribute equally to decision-making.
Tip: Consider consensus-based decision-making models and/or majority-vote-based
committee structures in which there is equal academic and community representation.
❏ Involve all partners equitably in the planning of meetings and other project events (e.g.,
meeting agenda development, selection of mutually convenient meeting/event locations)
❏ Facilitate meetings in a manner that elicits input from all who are present, including
those who might speak less comfortably or frequently than others.
Tip: Consider having a rotating meeting “chair”, so that different participants have the
opportunity to facilitate and lead discussions.
❏ Engage the expertise of community members regarding the community, and of existing
social inequalities.
Tip: Ask community partners to provide presentations, workshops or other educational
activities about the community/ies they serve and the work they do, so that academic
partners learn about the users and potential users of a technology, and how technology
may integrate with offline programs and services.
❏ Fully explain academic and technical language, and solicit input from community
partners on terms/language they use so as to facilitate mutual learning.
Tip: Consider developing a glossary of terms so that people can review them as needed.
Principle 3: Assisting community based organizations and community members with
building technological and research capacity.
❏ Look for ways to use the collaboration as an opportunity to enhance the technological
infrastructure of community-based organizations, and to enhance technology access
among the people they serve (e.g., free Wi-Fi access, computer centers).
❏ Use open source technological platforms when possible, to avoid introducing technology
maintenance costs that cannot be absorbed beyond the life of a project.
❏ Create sufficient technological documentation so that future staff members and/or
volunteers can maintain a technological intervention.
❏ Develop technology training opportunities for staff or volunteers of community
organizations and for other community members.
❏ Assess community members’ interests in participating in research design, data
collection, and analysis phases of the research. Arrange for educational opportunities
and/or mentorship in research methods for interested community members.
❏ Provide opportunities for community members to serve as co-authors of scholarly
manuscripts.
❏ Consider co-presenting research results in both community and academic settings.
Principle 4: Building collaborative partnerships in all research phases.
❏ Begin joint community-academic team meetings in advance of project design and
funding proposal development.
Tip: Consider starting meetings at least 4-5 months before any funding proposal is
developed, and often earlier if the partnership is new.
❏ To shape the project’s goals, research questions, and methods, hold discussions to
identify partners’ assumptions and project priorities.
❏ Plan for when and how community and academic partners will be involved in the various
stages of the research.
❏ Budget for resources required for facilitating collaborative work in any funding proposal.
Tip: For larger projects, consider hiring part- or full-time project coordinators (at both
academic and community organizations) whose responsibilities will include helping to
manage the logistics of the collaboration. Also consider how to support the skills
development and career goals of project coordinators.
Principle 5: Defining ownership of technology-related project outputs and planning for
technology maintenance.
❏ Ensure that any subcontracts associated with projects address the issue of the
ownership of, and ongoing access to, research products (e.g., software, documentation).
❏ Where possible, give community-based organizations control over content and other
critical aspects of informatics interventions.
Principle 6: Viewing research and partnership building as a cyclical and iterative
process.
❏ Approach the partnership from a long-term perspective, and plan activities to develop
the partnership, and to maintain it beyond the life of any one project.
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Tip: Look for sources of funding to develop research partnerships. For example, some
Clinical and Translational Science Awards (CTSA) sites fund community-based
participatory research collaboration building and pilot projects, and PCORI has recently
announced a “Pipeline to proposal” funding stream to allow for initial collaborative
formation activities.
To build trust and mutual investment, academic partners can support community
partners in their ongoing activities.
Tip: Volunteer to provide technology training to the organization’s clients or help to
maintain the organization’s social media presence.
Conduct intermittent partnership evaluations, including examining the extent to which
empowerment and engagement goals are being achieved.
Identify ways that academic partners can continue involvement in the community beyond
the conclusion of a grant or other funding source.
Principle 7: Integrating user-centered design (UCD) or participatory design (PD) into
CBPR projects.
❏ Use PD or UCD approaches to collect data on community member perspectives on
technology and design.
❏ Gather technology design requirements in ways that validate local knowledge.
Tip: Photo-elicitation exercises can provide insights into everyday lived experiences.
❏ Facilitate input from community members by making design alternatives concrete.
Tip: Consider artifact-based approaches such as low-fidelity prototypes or technology
probes, and/or scenario-based approaches such as Futures Workshops.
❏ Be prepared to provide technologies for participants to use during user studies and other
research activities if they do not have access to them.
❏ Reflect on results to ensure that design process findings address the research aims.
Principle 8: Integrating research results for mutual benefit.
❏ Plan a discussion in which both community and academic partners describe what they
want from the collaboration, in both the short- and long-term.
Tip: Consider local socio-political climate when coordinating these meetings; sometimes
multiple meetings must be held within the same community to reach all stakeholders.
❏ Negotiate to find areas in which all partners can, ideally, obtain enough of what they
want from the project to make the commitment of time and other resources worthwhile.
❏ Sufficiently compensate for the time of community partners to participate in the research.
Funding proposals should ensure that a reasonable proportion of the funds go to
community partners for this purpose.
❏ Facilitate use of research data to seek ongoing operational funding.
Principle 9: Incorporating positive and ecological perspectives into research and
technology design/deployment.
❏ Embed new technologies in trusted social networks or organizational programs/services.
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Incorporate technology features that give people opportunities to assist others in addition
to being assisted by them (e.g., opportunities to both use and contribute reviews to a
healthcare provider recommender site).
When possible, leverage technologies that community members have already
incorporated into their daily lives.
Investigate environmental factors that influence health behaviors and technology
practices, and consider them in the design of informatics interventions.
Principle 10: Disseminating knowledge to all partners through multimodal approaches
that build technical capacity and provide opportunities for additional informatics
research.
❏ Determine the communication vehicles that are most important to community and
academic partners.
❏ Provide adequate funds in the project budget for the dissemination of research results to
community partners and participants (e.g., funding to hold community workshops,
resources to produce a video).
❏ Present research findings in formats and levels of detail that reflect the varied levels of
technology aptitude, health literacy and numeracy in the population.
Tip: Consider using verbal, text-based and visual formats. (e.g., YouTube videos,
posters, youth-friendly ‘zines, infographics, charts/graphs, reports, etc.)
❏ Consider conducting informatics research that evaluates alternative approaches to
results dissemination.