Publishing & peer review
Guidelines for recruiting patient and community stakeholders to review relevant health research manuscripts.
Engaging patients and community members in manuscript review enhances relevance, accessibility, and trustworthiness by aligning research with real-world concerns, improving transparency, and fostering collaborative, inclusive scientific discourse across diverse populations.
July 30, 2025 - 3 min Read
Trusted engagement begins with clear aims that describe how patient and community input will shape manuscript interpretation, design decisions, and dissemination strategies. Recruiters should articulate expected contributions, such as prioritizing outcomes meaningful to patients, identifying potential biases, and flagging language that could confuse lay readers. Build a concise invitation that outlines time commitments, review tools, and protective measures for confidentiality. Prioritize cognitive accessibility by offering plain-language summaries and glossaries. Establish a brief orientation to scholarly standards, ethics, and the journal’s expectations so participants feel prepared, respected, and confident in offering constructive feedback.
Reaching diverse stakeholders requires outreach strategies that go beyond traditional channels. Partner with patient advocacy groups, community organizations, and local health networks to widen access to various perspectives. Provide multiple enrollment paths, including online forms, telephone intake, and in-person sign-ups at clinics or community centers. Ensure compensation is fair and transparent, recognizing the value of lived experience as expert insight. Clarify that participation is voluntary and non-punitive, with options to withdraw at any time. Create a welcoming, nonjudgmental review environment that encourages quiet contributors as well as vocal advocates to share their observations.
Structured feedback channels ensure clarity, accountability, and impact.
After enrollment, deliver a user-friendly briefing package that translates the manuscript’s aims, methods, and outcomes into plain language. Include a one-page lay summary, a glossary of technical terms, and annotated sections highlighting components most relevant to nonexpert readers. Offer examples of questions participants might ask, such as how results could affect care decisions or access to services. Provide a short, interactive video or audio guide to navigating the manuscript, emphasizing how feedback will be used to improve clarity, equity, and applicability. Ensure the materials are culturally sensitive and accessible to readers with varying literacy levels and language needs.
During the review process, maintain a structured feedback loop that respects participants’ time while preserving methodological rigor. Use a standardized template to collect comments on relevance, clarity, potential misinterpretations, and ethical considerations. Allow participants to flag terminology that may be stigmatizing or scientifically dense, and invite suggestions for alternative phrasing. Protect confidentiality by masking identifying details when possible and obtaining explicit consent for any quotes used in the manuscript’s dissemination. Conclude with a concise summary of how stakeholder input influenced revisions and what remains uncertain.
Transparency about process, impact, and accessibility builds confidence.
When planning compensation and recognition, align incentives with ethical standards and institutional policies. Transparent stipends or honoraria should reflect time, travel, and the value of lived experience without creating coercive expectations. Document all payments in a formal agreement, including tax considerations and reporting requirements. Communicate eligibility criteria clearly, and provide receipts or statements that participants can use when discussing contributions with employers or healthcare providers. Recognize participants in a visible but respectful way, such as listing names in acknowledgments or offering certificates of participation that emphasize the impact of their input.
To strengthen trust, publish explicit commitments to equity and accessibility in recruitment materials. State the journal’s stance on involving historically marginalized communities and its strategies to minimize barriers to participation. Provide language options and interpretation services to accommodate non-native speakers. Ensure review materials are compatible with assistive technologies and accessible formats. Collect demographic data only when necessary and with consent, then summarize how diverse voices informed decisions. Regularly evaluate recruitment outcomes to identify gaps and opportunities for broader inclusion in future cycles.
Practical guidance, training, and ongoing reflection sustain engagement.
In parallel with professional reviewers, consider a training component for patient and community reviewers. Offer short, interactive modules on research literacy, bias recognition, and how to phrase constructive critiques. Create opportunities for dialogue, such as moderated Q&A sessions with the manuscript authors. Encourage participants to share personal experiences respectfully when they illuminate practical relevance or potential harms. Monitor power dynamics that may discourage quieter participants, and implement facilitation techniques that invite equal participation from all attendees. Track learning outcomes to improve future orientations and ensure ongoing competence.
Build a feedback culture that emphasizes practical utility over perfection. Encourage reviewers to propose concrete edits for phrasing, figures, and tables that convey information clearly to nonexperts. Provide examples of successful revisions and explain how feedback shifts the manuscript’s emphasis toward patient-centered outcomes. Maintain a repository of common terms and suggested alternatives to support consistency across future reviews. Meet participants where they are, offering flexible review deadlines and asynchronous discussion options to accommodate diverse schedules. Close each cycle with a debrief that highlights successes and identifies remaining gaps.
Ethics, safeguards, and accountability underpin responsible recruitment.
Beyond individual manuscripts, establish communities of practice that sustain long-term collaboration between researchers and stakeholders. Create periodic webinars, think tanks, or regional forums where members can discuss methodological concerns, equity considerations, and dissemination strategies. Encourage co-creation of dissemination plans that translate findings into patient-friendly materials, community briefings, and policy briefs. Develop a repository of case studies illustrating how stakeholder input shaped outcomes, and share lessons learned publicly to promote reproducibility and accountability. Support continuous improvement by inviting external audits or peer feedback on recruitment practices and reviewer support.
Ethical safeguards must accompany every recruitment initiative. Require researchers to obtain informed consent for stakeholder involvement, clarifying the scope and limits of participation. Establish clear boundaries to prevent coercion or undue influence, especially when participants discuss personal health experiences. Ensure that data collected from stakeholders is stored securely and used strictly for stated purposes. Provide access to manuscript drafts under controlled conditions and obtain permission before publicizing any identifiable quotes. Regularly review consent forms and data handling procedures to adapt to evolving privacy expectations.
Finally, measure the impact of patient and community reviewer involvement on manuscript quality. Track changes in readability, accessibility, and practical relevance, as well as downstream effects on patient engagement and care pathways. Gather qualitative feedback from both authors and reviewers about the collaboration process. Use these insights to refine recruitment strategies, materials, and support structures. Publish summarized results alongside manuscripts or in dedicated reports to demonstrate value and promote broader adoption across journals. Share successes and challenges honestly to encourage transparency and continual improvement within the scholarly community.
As the field matures, cultivate a culture of shared ownership over health research outputs. Celebrate diverse contributions and recognize that patient voices can alter research trajectories for the better. Keep accessibility at the center of every stage—from initial invitation to final publication—and constantly seek feedback to improve inclusivity. Align recruitment practices with evolving ethical standards and regulatory expectations, ensuring that governance remains robust yet flexible. By embedding patient and community stakeholder review into routine publishing workflows, journals can strengthen trust, relevance, and the practical impact of science on people’s lives.
