Strategies to facilitate the report-back of research results: a systematic review of methods and evaluations

Abstract

Background

Reporting back of research results (RBRR) is becoming a recognized component of ethical community-engaged and human subjects research. Scholars emphasize the importance of involving participants in developing reports and methods of report-back, arguing that RBRR enhances comprehension, trust, and engagement with findings. Yet, despite growing recognition, standardized guidelines for ethical RBRR remain limited. To address this gap, we conducted a systematic literature review of peer-reviewed studies- primarily in genomics, environmental health, and biomonitoring- to identify RBRR development strategies. Secondarily, we assessed how these strategies may align with the bioethical principles of autonomy, beneficence, nonmaleficence, and justice to inform future RBRR design.

Methods

A systematic search of Web of Science, PubMed, and Google Scholar yielded 2,164 records; after removing 748 duplicates, 1,416 unique studies were screened, and 32 met the inclusion criteria (peer-reviewed, published 2016–2024, written in English). Studies were required to include primary report-back (e.g., direct return of results to participants) or detailed descriptions of RBRR methods or recommendations. The review followed a PE/IO (Population, Exposure, Intervention, Outcome) framework and adhered to PRISMA guidelines. Risk of bias was assessed using the STROBE cohort study checklist and GRADE criteria.

Results

Across studies, RBRR was framed as an ethical obligation, and an opportunity to improve understanding of environmental influences on health. Most emphasized plain-language communication (n = 8), multimodal dissemination (n = 10), and culturally responsive design (n = 4). However, only three studies applied formal communication or evaluation frameworks, and only one-third described how materials were developed. Common evaluation methods included post-report surveys (n = 22), interviews (n = 18), and focus groups (n = 14), however, we noted a lack of consistency in evaluation methods. Collectively, these 32 studies underscored the importance of tailoring materials to population characteristics, providing multiple formats, and experimenting with visual and digital tools to enhance comprehension. Although none cited a bioethical framework, the core principles were reflected in practice: respect for autonomy through participants’ right to know their results; beneficence through the development of accessible, actionable materials; nonmaleficence through anticipating and mitigating anxiety or confusion; and justice through culturally and linguistically appropriate design. Yet, gaps remain, with inconsistent characterization of RBRR methods and limited evaluation of RBRR. This study was limited by the risk of bias in participant selection, as many studies included participants with prior interest in the field of environmental health or emotional investment in the studies.

Conclusion

Ethical RBRR supports both individual and collective knowledge and action when paired with ongoing community engagement. Developing consistent, evidence-based best practices that balance feasibility with contextual relevance could strengthen trust, comprehension, and the translation of scientific findings into meaningful public-health action.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12940-026-01281-z.

Background

The complexity of research findings often makes it difficult for study participants and the public to understand and utilize key scientific insights. The report-back of research results (RBRR) aims to address this gap by sharing study findings with participants and the public in a clear, accessible manner, where “accessible” means information that is easy to obtain, easy to understand, and easy to apply in everyday life. Report-back of individual environmental health research results is an emerging ethical practice that enhances participant understanding, supports informed action, and strengthens the overall impact of environmental health research by providing personalized findings with clear context [1]. RBRR can take two primary forms: individual report-back, in which participants receive their own personal results, often accompanied by comparisons to reference values, health guidelines, etc., and aggregate report-back, in which participants receive summarized study-wide findings that reflect group-level results [2]. These approaches can be delivered alone or in combination, depending on study objectives, ethical considerations, participant needs, and logistical constraints (e.g., availability of resources). The goal of RBRR is to provide clear, plain-language research results to study participants and communities, enabling them to apply the information to their unique situations and to use the tools to mitigate environmental exposures and/or improve their health, should they choose to do so.

The need for clear, evidence-based guidelines in RBRR is becoming increasingly evident. Differences in communication goals, evaluation strategies, data types, and participants’ cultural, linguistic, and educational contexts contribute to this inconsistency. In many ways, the current landscape reflects a “trial-and-error” approach, with individual projects developing study-specific methods in the absence of broadly applicable best practices with few exceptions [1, 2]. While this flexibility allows for tailoring to scientific populations and research aims, and reflects the necessity of experimentation, it also limits the transferability of effective strategies. Moreover, RBRR requires significant resources- including time, funding, and specialized expertise in areas such as graphic design, software development, and risk/science communication- particularly when results lack established health or regulatory guidelines and require careful contextualization [3, 4]. Without more formalized guidance, researchers risk underutilizing the potential of RBRR or even causing harm in how it is developed and/or disseminated. Several studies have noted that participants sometimes experience anxiety, fear, or confusion when receiving unexpected or elevated results, particularly in the absence of health-based benchmarks or clear mitigation options [5–8]. These feelings can be distressing if not anticipated or supported. Yet, participants across studies continued to express a strong desire to receive their results, valuing transparency and their “right to know” [9]. Importantly, well-prepared RBRR, including contextual benchmarks, clear visualizations, and opportunities for follow-up, has been shown to mitigate these emotional impacts and transform concern into motivation for health-protective actions [3, 10, 11]. Establishing clear recommendations will be essential for promoting ethical, participant-centered RBRR practices that can be consistently applied across various research contexts [12, 13].

We posit that ethical RBRR is that which is developed following bioethical principles of beneficence, respect for autonomy, justice, and nonmaleficence. In the context of RBRR, beneficence involves maximizing potential benefits and promoting participant well-being while minimizing harm. Respect for autonomy emphasizes the right of individuals to make informed choices about their participation and the information they receive- supported by transparent communication and comprehension-focused materials. Justice calls for the equitable distribution of research benefits and burdens, ensuring fair access to information and resources derived from research. Non-maleficence underscores the responsibility to avoid causing harm, whether physical, psychological, or social, through the collection, interpretation, or communication of results. We posit these principles may additionally support the bioethical design and implementation of RBRR strategies across scientific disciplines, as grounding report-back of research results in core bioethical principles ensures that communication with participants maximizes benefits, respects their right to informed decision-making, and avoids potential harm [14].

To understand how to develop ethically informed RBRR, the study first examined three key domains of RBRR: (1) the development of report-back materials, including how reports are designed and tailored for comprehension; (2) dissemination strategies, or the methods used to deliver results to participants; and (3) evaluation approaches, which assessed participant comprehension, emotional response, and behavioral outcomes. Together, these domains provide insight into how RBRR can be designed to maximize clarity, accessibility, and impact. This study was further grounded in the core bioethical principles of beneficence, respect for autonomy, justice, and non-maleficence. As outlined by Morello-Frosch et al. [14], these principles provide a foundation for considering the ethical obligations of returning research results to participants [14]. These principles also help ensure that the return of results is implemented equitably, supporting a just and ethically robust approach to RBRR design and practice.

Methods

Literature review

Scope of review

This systematic review aims to address the question: “What are the most commonly used report-back strategies, and how can RBRR be developed to follow bioethical guidelines?” Following PRISMA guidelines and employing the PE/IO framework, this review evaluates existing RBRR strategies and approaches, focusing on the Population (research participants), Exposure (RBRR practices), Intervention (bioethical strategies), and Outcomes (accessibility and effectiveness).

Data sources and extraction

Data for this review were gathered from PubMed, Web of Science, and Google Scholar, from January to February 2025. Specifically, data extraction concentrated on the design of the RBRR strategies used, the metrics used to measure the success of these strategies, and any established guidelines that informed their implementation.

The initial database search identified 2,164 records (Web of Science = 1,177; PubMed = 787; Google Scholar = 200). Retrieval of studies from Google Scholar were restricted to 200 to ensure relevancy [15, 16]. After removal of 748 duplicates using Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia), 1,416 records remained for screening. Of these, 1,341 studies were excluded based on titles and abstracts. Following full-text screening of the remaining 75 studies, 43 studies were excluded due to lack of access and 40 due to study design not meeting inclusion criteria. All screening was conducted by one researcher, while full text reviews were completed by three. The three researchers independently reviewed articles (title/abstract and full-text), and, in cases of disagreement, met to reach consensus on whether to include or exclude a study. Ultimately, 32 studies met all criteria and were included in this review.

Search strategy and software

A comprehensive search strategy was developed using Boolean operators to enhance the search results. Initially, terms such as “report-back,” “research results,” “ethics,” and variations like “strategy,” “protocol,” or “guidelines” were combined to refine the literature search effectively. However, for the final review, the search term “report-back” was the most effective in capturing the scope of RBRR research (Fig. 1). The finalized search terms were approved by a large research team (n = 8), all of whom have expertise and experience with RBRR.

Fig. 1.

PRISMA flowchart depicting reviewed and extracted articles

While this term most accurately reflected the concept of RBRR, it also captured many unrelated studies describing patients reporting back pain (e.g., upper or lower back pain) to clinicians. This overlap explains the high number of studies excluded during the preliminary title and abstract screening phase.

The review adhered to PRISMA guidelines to ensure a transparent and systematic approach to literature selection and reporting (Appendix 1) [17]. Covidence software was also used to manage the screening and data extraction processes.

Inclusion and exclusion criteria

This systematic literature review employed specific inclusion and exclusion criteria to evaluate the relevance of the selected studies. To be included, studies had to be peer-reviewed to ensure the research was credibile and written in English. Studies were also required to contain primary report-back (e.g., describing studies wherein researchers actively reported back data to participants), or include methods, protocols, or recommendations for report-back strategies in their study designs.

Studies that discussed the ethics of report-back exclusively, without a primary RBRR or an empirical evaluation, were excluded. Additionally, studies must have been published between 2016 and 2024. This aligns with the passage of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule in 2016, which established individuals’ right to inspect and obtain copies of their protected health information. For included studies, we systematically recorded whether they included any empirical assessment of RBRR effectiveness. This included internal evaluations (e.g., pilot testing of report-back materials), the use of evaluation tools such as the CDC Clear Communication Index, and assessments using surveys, interviews, or focus groups.

Data extraction

Following study selection, data were extracted into a standardized table created in Covidence (Table 1).

Table 1.

Full extraction table of all reviewed studies

Author, Year	Title	Research type (Clinical. Research)	Sample size	Sample population1	RBRR methodology (Personal, Aggregate)	RBRR development strategies	RBRR type	Dissemination strategy	Evaluation type	RBRR outcomes assessed	Risk Characterizationb
Boronow 2017a [5]	DERBI: A Digital Method to Help Researchers Offer "Right-to-Know" Personal Exposure Results.	Research	94 GHS	Adults, prior participation in study	Personal	NA	Electronic	Electronic app (DERBI)	Interviews	↑ Satisfaction with RBRR format	NA
			295 CHDS	Adults, prior participation in study		NA				↑ Satisfaction with RBRR format	NA
Boronow 2023 [18]	The Effect of Individual or Study-Wide Report-Back on Knowledge, Concern, and Exposure-Reducing Behaviors Related to Endocrine-Disrupting Chemicals.	Research	300	Adults, prior participation in study	Both	NA	Electronic	Electronic app (DERBI)	Interviews and surveys	↑ Knowledge, ↑ Desire for behavioral change	NA
Brody 2021 [19]	Outcomes from Returning Individual versus Only Study-Wide Biomonitoring Results in an Environmental Exposure Study Using the Digital Exposure Report-Back Interface (DERBI).	Research	295	Adults, prior participation in study	Both	NA	Electronic	Electronic portal  (MyCDHSReport.com)	Interviews	↑ curiosity, concern over above average exposures, ↓ worry overall	Medium
Cardona-Cordero 2023 [20]	Mi PROTECT: A personalized smartphone platform to report back results to participants of a maternal-child and environmental health research cohort program in Puerto Rico.	Research	61	Adults, prior participation in study	Personal	Group meetings discussed platform and RBRR preferences with open-ended feedback; WhatsApp groupchat for additional feedback	Electronic	Electronic portal with community meeting  (DERBI)	In-person meeting; direct verbal feedback	↑ Satisfaction with RBRR format	NA
Claudio 2018 [21]	Communicating environmental exposure results and health information in a community-based participatory research study.	Research	310	Adults, prior participation in study	Personal	NA	Physical	Newsletter	Questionnaire	↑ Knowledge	Medium
Gaieski 2019 [22]	Research participants' experiences with return of genetic research results and preferences for web-based alternatives.	Both	88	Adults, met medical criteria	Personal	NA	NA	NA	Survey/questionnaire	↑ Satisfaction with RBRR format	NA
Giannini 2018 [10]	Comprehension and perceptions of study participants upon receiving perfluoroalkyl substance exposure biomarker results.	Research	260	Adults, met geographic criteria	Personal	NA	Physical	Mailed reports	Survey	↑ Desire for behavioral change	Medium
Haynes 2016 [23]	Community Engagement and Data Disclosure in Environmental Health Research.	Research	106	Adults, met geographic criteria	Personal	NA	Physical	Mailed reports and community meeting	Questionnaire and community meeting	↑ Satisfaction with RBRR format	High
Heukelom 2023 [24]	Patient satisfaction with return of pharmacogenomic results utilizing a patient portal message.	Clinical	3500	Adults, met medical criteria	Personal	NA	Physical	Mailed two surveys regarding RBRR preferences	Survey	↑ Satisfaction with RBRR format	NA
Kaphingst 2016 [25]	How, who, and when: preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age.	Both	60	Adults, met medical criteria	Personal	NA	In-person delivery	Semi-structured interviews examining RBRR preferences	Interview	NA	NA
Kostick 2020 [26]	Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.	Clinical	39	Adults, met occupational criteria	NA	NA	NA	Interviews on best practices	NA	NA	NA
Lewis 2021 [27]	Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.	Both	49	Adults, met medical criteria	Personal	NA	NA	Focus groups for RBRR preferences	Focus groups	NA	NA
Lynch 2022 [28]	Developing video education materials for the return of genomic test results to parents and adolescents.	Research	66	Adults and their children who met medical criteria	Personal	Audiovisual tools	Electronic	Focus groups for RBRR preferences	Focus groups	NA	NA
Nelson 2020 [29]	Reporting Back Environmental Health Data Among Outdoor Occupational Workers in the Cold Season in North Carolina, USA	Research	66	Adults, met occupational criteria	Personal	NA	Physical	Report-back packet displaying results in multiple formats	Survey	↑ Satisfaction with RBRR format and ↑ desire for behavioral change	NA
Nestor 2020 [30]	Pilot Study of Return of Genetic Results to Patients in Adult Nephrology.	Both	104	Adults, met medical criteria	Personal	NA	Electronic	Report-back workflow including letter, actionable findings, etc.	Interviews	↓ Satisfaction with RBRR format	NA
Patel 2021 [31]	Implementation matters: How patient experiences differ when genetic counseling accompanies the return of genetic variants of uncertain significance.	Both	79	Adults, met medical criteria	Personal	NA	NA	Interviews to gather perceptions and preferences	Interviews	NA	High
Perovich 2021 [32]	Data Clothing and BigBarChart: Designing Physical Data Reports on Indoor Pollutants for Individuals and Communities.	Research	72	Adults, prior participation in study	Personal	Collecting feedback on RBRR through meetings, prototype testing & interviews	Physical	Data physicalization (data clothing)	Community meetings, prototype testing, interviews	↑ Satisfaction with RBRR format	Medium
Riley 2024 [3]	Development and Outcomes of Returning Polycyclic Aromatic Hydrocarbon Exposure Results in the Washington Heights, NYC Community.	Research	190	Adults, prior participation in study	Both	Focus groups and surveys informed report development	Physical	Report-back document	Focus groups and surveys	↑ Satisfaction with RBRR format, ↑ EHL, ↑ suggestions for difference in report layout	High
Rochester 2024 [11]	A Personalized Intervention to Increase Environmental Health Literacy and Readiness to Change in a Northern Nevada Population: Effects of Environmental Chemical Exposure Report-Back.	Research	174	Adults, prior participation in study	Personal	NA	Electronic	Mobile app or PDF depending on preference	Surveys	↑ Digital literacy, ↑ EHL, ↑ desire for behavioral change	Medium
Rock 2021 [33]	Approaches for Disseminating Environmental Research Findings to Navajo Communities.	Research	NA	Adults, met cultural criteria	Both	NA	Physical	Report booklet	Public meetings	↑ Satisfaction with RBRR format, best practice suggestions	NA
Rohlman 2016 [34]	Communicating Results of a Dietary Exposure Study Following Consumption of Traditionally Smoked Salmon.	Research	9	Adults, met cultural criteria	Both	NA	Physical	Informational handouts- included cover letter, conclusions, key findings, etc.	In-person meeting	Best practices handbook	High
Ryan 2023 [35]	Participant engagement to develop report-back materials for personal air monitoring.	Research	16	Children and their caregivers, children met medical criteria	Both	Participant-engaged approach to developing RBRR materials	Physical	Report-back document including images, information on samplers, background information, etc.	Focus groups	↑ Suggestions for report layout	NA
Samon 2023 [4]	Integrating participant feedback and concerns to improve community and individual level chemical exposure assessment reports.	Research	31	Adults, prior participation in study	Both	Participation feedback guided creation of RBRR materials	Physical	Reports presented during focus groups	Focus groups, Likert scale questions and discussion prompts	↑ Suggestions for report layout	NA
Schollaert 2021 [36]	Reporting Results of a Community-Based In-Home Exposure Monitoring Study: Developing Methods and Materials.	Research	16	Adults, prior participation in study	Both	Participation feedback guided two-step report-back process	Physical	Mailed packets	Questionnaire, observational notetaking and community meeting	↑ Satisfaction with RBRR format	NA
Serrano-Saloman 2024 [37]	Supporting knowledge justice through community science air quality monitoring and a reciprocal reporting process.	Research	60	Adults	Personal	NA	Physical	Paper summary of individual data followed by a more detailed electronic version	Interviews	NA	NA
Terek 2022 [6]	Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children.	Research	40	Adults	Personal	NA	Electronic	Electronic delivery of polygenic risk scores	Interviews	↑ Positive and negative emotional outcomes, ↑ suggestions for report layout	NA
Thompson 2018 [38]	Report-back for geo-referenced environmental data: A case study on personal monitoring of temperature in outdoor workers.	Research	66	Adults, met occupational criteria	Both	NA	Physical	Individual report packets- included a variety of visualizations	Surveys	↑ Positive and negative emotional outcomes, ↑ suggestions for report layout	NA
Tomsho 2019 [39]	A Mixed Methods Evaluation of Sharing Air Pollution Results with Study Participants via Report-Back Communication.	Research	72	Adults	Both	NA	Physical	Report-back packets and in-person community meeting	Questionnaire	↑ Suggestions for report layout	High
Tomsho 2022 [40]	A process for creating data report-back tools to improve equity in environmental health.	Research	20	Adults, prior participation in study	Personal	Interview feedback guided report-back feedback	Physical	Report-back document	Interviews	↑ Negative emotional outcomes like frustration, confusion and trouble understanding materials	NA
Von Behren 2022 [41]	Returning Individual Tap Water Testing Results to Research Study Participants after a Wildfire Disaster.	Research	136	Adults, prior participation in study	Both	NA	Physical	Report-back packets- included FAQ, fact sheets, etc.	Survey	↑ Positive emotional outcomes, ↑ desire for behavioral change	NA
Williams 2018 [42]	Implementation of a patient-facing genomic test report in the electronic health record using a web-application interface.	Both	NA	Adults	Personal	NA	Electronic	Electronic portal COMPASS, multiple style reports	Qualitative usability feedback	NA	NA
Yelton 2023 [43]	Implementation of a patient-facing genomic test report in the electronic health record using a web-application interface.	Research	39	Adults, met geographical criteria	Both	NA	Physical	Printed report-back packets included fact sheets, heath guideline information, etc.	Surveys, including Likert scale questions	↑ Positive emotional outcomes, ↑ desire for behavioral change	NA

¹Adults are categorized as individuals age 18 or older, while children are age 0-17 years of age. DERBI Digital Exposure Report-Back Interface

^aBoronow et al. [5] reported on two separate studies, the CDC Green Housing Study (GHS) and Child Health and Development Studies (CHDS) study

^bRisk characterization defined based on health benchmarks reported. “High”: Contaminants with well-established human toxicity and clear regulatory or health-based thresholds (e.g., EPA, CDC, ATSDR) where exceedances may indicate meaningful health concern and warrant follow-up action; “Medium”: Contaminants with emerging or partial health-based reference values (e.g., NHANES percentiles, biomonitoring equivalents) that provide contextual but not definitive indicators of risk; “Low”: Contaminants or data types lacking established health-based thresholds, where results are interpreted qualitatively or comparatively rather than as indicators of direct health risk

For each study included, we recorded bibliographic information (title, author(s), publication year), study characteristics (study design, population, field of research, sample size), and details specific to RBRR (report-back materials, dissemination strategies, evaluation methods, outcomes). Extraction was conducted by one independent researcher, and risk of bias was assessed using the STROBE checklist for cohort studies and GRADE criteria (Appendix 2) [44, 45].

Thematic analysis

An annotated bibliography was developed for the final set of 32 studies to organize and summarize key information in a structured format that emphasizes summarizing, assessing, and reflecting on each study’s contribution to the research question. Each entry included a full citation, a concise summary of the study’s objectives, population, methods, report-back approach, and key findings, as well as notes on evaluation strategies and relevance to the review aims (Appendix 3).

To systematically synthesize findings across studies, a deductive thematic analysis was conducted using an a priori coding framework informed by ethical theory, prior report-back literature, and common research communication practices. This approach enabled structured interpretation of report-back strategies while facilitating comparisons across study populations, dissemination modalities, and evaluative outcomes. The annotated bibliography was coded independently by one researcher using Microsoft Word, with a second round of coding conducted by the same researcher to ensure consistency and improve reliability. Five core themes were identified and applied across the included studies: report-back materials, dissemination strategies, evaluation approaches, participant engagement in development and bioethical considerations (respect for autonomy, beneficence, nonmaleficence, justice).

Results

Overview of included studies

This review encompassed 32 studies published between 2016 and 2024 that examined RBRR in environmental health and related fields. Of these, 15 studies were situated primarily in environmental health, 9 in biomonitoring, including chemical exposure studies, and 8 in genomic or genetic testing contexts. Most studies (n = 27) involved research participants, while a smaller subset (n = 5) was conducted in clinical or healthcare settings with patients. The number of RBRR publications has increased over the years, with most publications occurring in 2023 (Fig. 2).

Fig. 2.

Publications of reviewed articles by year

Five core themes were identified and applied across the included studies: RBRR development, RBRR dissemination strategies, evaluation, participant engagement, and bioethical principles. For this review, 'participant engagement’ is defined as any involvement or collaboration between research participants and researchers throughout a research study. This differs from ‘ community engaged research', wherein participants are involved beyond that of research subjects, often co-designing the research or aiding in data interpretation [46].

These themes reflect both the technical features of report development, dissemination and evaluation, as well as the ethical and practical dimensions of participant engagement and response. Together, these themes provided a robust framework for analyzing how report-back strategies function in practice, how they are received by participants, and how they may support or hinder ethical research goals. The analysis of these themes within the reviewed articles was used to supplement the overall literature review and to synthesize best practices. The deductive thematic structure also facilitated the alignment of communication strategies with foundational ethical principles, highlighting both promising practices and ongoing challenges in results communication across various research contexts.

Development of report-back materials

The development of RBRR materials varied considerably across studies, with only eight (25%) providing detailed accounts of how the materials were designed [3, 4, 20, 32, 35, 36, 40, 47]. Across these eight studies, clear, intentional development pathways were described that included both the rationale for RBRR design and the steps taken to ensure accessibility and relevance. These efforts often began with formative research- sometimes including community advisory boards, stakeholder interviews, and focus groups- to gather input on preferred formats, literacy levels, and dissemination methods. Iterative feedback cycles allowed researchers to refine report-back materials before broad distribution in products more closely aligned with participant needs and cultural contexts.

Regarding the presentation of personal versus aggregate results, studies often compared the impact of developing individualized exposure data with that of study-wide summaries. While both formats were generally viewed as informative, personalized results- especially in clinical settings- tended to elicit stronger emotional reactions, such as increased concern, reflection, and behavioral intention [5, 19, 22]. Additionally, aggregate data were more commonly leveraged in community advocacy contexts and were preferred when individual interpretation posed logistical or ethical challenges [33, 43].

Some studies also used formal health communication frameworks- such as the health literacy principles (n = 3) [48], risk communication best practices (n = 2) [49, 50], or the CDC Clear Communication Index [51] to guide development (n = 1) (Table 1). Others grounded their approach in community-based participatory research (CBPR) or community-engaged research principles (n = 6), ensuring that participants were not only recipients of information but active collaborators in shaping its presentation (Table 1). For example, Riley et al. [3] incorporated community liaison feedback to revise graphs for improved readability, while Samon et al. [4] adjusted visual complexity and simplified technical language in response to participant concerns [3, 4]. An additional four studies (13%) gathered participant feedback on existing reports or explored preferences for return of results, but did not provide detailed descriptions of material development [5, 19, 22, 27]. Most studies (n = 20, 62%) offered little to no information about their design processes, underscoring a persistent gap in transparency and reproducibility for RBRR methods.

A prominent theme across studies was the emphasis on clear and accessible communication; this was mentioned in eight studies. Of those studies, four stated that their reports were written at or below an eighth grade reading level and incorporated design elements to support low-literacy populations [4, 11, 21, 40]. For cross-cultural and multilingual communities, four studies (13%) incorporated tailored strategies such as bilingual reports, culturally adapted visuals and oral dissemination methods [20, 31, 33, 36]. Six of the eight demonstrated effectiveness of visual interpretive tools- such as strip plots, color-coded charts and contextual infographics- which participants described as easy to understand and actionable [3, 4, 10, 29, 39, 40]. At the same time, most of these studies also reported challenges with graph literacy and overly technical jargon, particularly in dense or data-heavy formats [3, 4, 32, 35, 39, 40]. To mitigate these barriers, layered approaches that paired simplified visuals with supporting explanatory text, or offered opportunities for interactive clarification during in-person sessions, were recommended, particularly in studies with smaller sample sizes. For example, Tomsho et al. [40] described revising language and numeracy demands based on participant feedback, and Yelton et al. [43] demonstrated that combining pictorial formats with supporting text improved comprehension and recall of well-water results [40, 43]. These examples highlight the importance of embedding iterative feedback and health communication principles directly into material development to ensure accessibility across various participant groups.

RBRR dissemination strategies

Multiple dissemination methods have been employed in RBRR, reflecting the range of study populations, research aims, and ethical considerations. Across the literature, strategies ranged from digital platforms and mailed materials to interactive group settings and novel physical tools (Table 1). This variety highlights not only the flexibility of RBRR practices but also the importance of tailoring dissemination approaches to participant needs, literacy levels, and contexts. Across the body of literature, dissemination strategies ranged from digital portals and mobile apps (n = 12) to mailed packets or printed materials (n = 21), audiovisual tools such as videos (n = 4), and in-person or community meetings (n = 15). Many studies used multiple dissemination methods (Table 1). Several studies (n = 8, 25%) employed interactive or in-person dissemination strategies, including one-on-one result reviews and community forums (Table 1). These approaches facilitated real-time clarification, emotional support, and interpersonal trust-building. Participants in these settings often demonstrated improved comprehension and greater satisfaction compared to those who received results through static or digital-only formats [3, 36]. For example, Rock et al. [33] reported that participants who attended community meetings were able to recall more key findings correctly and expressed higher trust in the research team compared to those who only received mailed results [33]. Similarly, Haynes et al. [23] found that one-on-one result reviews allowed participants to ask clarifying questions, which led to improved self-reported understanding and reduced anxiety about elevated exposures [23]. Additionally, multi-modal dissemination- combining mailed or other physical materials with in-person sessions- was noted to enhance both understanding and engagement [29, 43]. For instance, Yelton et al. [43] reported that participants who received both mailed pictorial water-quality results and attended a follow-up meeting demonstrated significantly higher recall scores and greater reported confidence in taking mitigation actions compared to those who only received mailed results [43].

Several studies (n = 7, 22%) exclusively used digital platforms to disseminate results, particularly in biomonitoring and genomic studies (Table 1). These platforms included the Digital Exposure Report-Back Interface (DERBI), and patient-facing electronic health record portals that were used to covey individual and study-wide results [5, 24, 42]. Digital dissemination was often praised for its convenience and ability to revisit results, though digital equity and user navigation barriers remained concerns for some groups [22, 42]. For example, Boronow et al. [5] found that participants appreciated being able to log into DERBI multiple times to review their exposure results at their own pace, but some participants required technical assistance to access the portal [5]. Similarly, Van Heukelom et al. [24] reported that older participants and those with limited digital literacy were less likely to engage with online portals, highlighting the need for supplemental phone or in-person support [24].

A smaller subset of studies (n = 3, 9%) explored novel or physical methods of dissemination, including wearable data visualizations, interactive booklets and tactile graphics [3, 32, 33]. For example, Perovich et al. [32] worked with community members to create wearable data visualizations- such as scarves and T-shirts- printed with chemical exposure data, which were worn and displayed during community meetings to spark dialogue [32]. Rock et al. [33] developed an interactive booklet that combined narratives, illustrations and results tables, allowing participants to work through the findings at their own pace. Similarly, Nelson et al. [29] used tactile graphics and simplified icons to present well-water data, making the results more accessible for low-literacy participants and visually engaging for younger audiences. These approaches were often described as engaging and emotionally resonant, particularly for participants less inclined toward digital tools. Preferences for these formats varied by demographic and cultural background, suggesting the importance of offering multimodal options to accommodate various populations.

To further explore dissemination strategy as a function of sample size, we characterized the studies based on size (Table 2).

Table 2.

RBRR strategies relative to sample size. Of the 32 articles, 29 (91%) described primary report-back. These studies were organized by the size of their cohort(s) to assess trends in RBRR strategies based on size

Sample Size	# Studies	Authors	RBRR Strategies
N = 1–10	2	Rohlman, 2016 [34]; Ryan, 2023 [35]	Handouts with visuals and summaries, tribal tailoring; Interactive visual reports co-designed with youth
N = 11–50	7	Kostick, 2020 [26]; Lewis, 2021 [27]; Samon, 2023 [4]; Schollaert, 2021 [36]; Terek, 2022 [6] ; Tomsho, 2022 [40]; Yelton, 2023 [43]	Researcher interviews on return of results planning; Focus groups on genomic data return and preferences; Community report; Mailed reports and in-person meetings; Hypothetical reports, interviews on understanding; Visual-rich packets, participant interviews, literacy tools; Plain language reports, one-on-one sessions, community meetings
N = 51–100	11	Cardona-Cordero, 2023 [20]; Gaieski, 2019 [22]; Haynes, 2016 [23]; Kaphingst, 2016 [25]; Lynch, 2022 [28]; Nelson, 2020 [29]; Patel, 2021 [31]; Perovich, 2021 [32]; Serrano-Salomόn, 2024 [37]; Thompson, 2018 [38]; Tomsho, 2019 [39]	DERBI app, WhatsApp groupchat; Surveys on web-based genetic counseling alternatives; Individual reports + community meetings; Interviews on genomic result delivery preferences; Video reports shaped by youth-parent feedback; Physical data visualizations (clothing, posters); Visual-rich packets, participant interviews, literacy tools
N = 101–300	6	Boronow 2017 [5], 2023; Brody, 2021 [19]; Giannini, 2018 [10]; Nestor, 2020 [30]; Riley, 2024 [3]; Rochester, 2024 [11]	DERBI online reports, personal vs. aggregate; Digital personal/aggregate reports via MyCHDSReport; Mailed visual summaries and fact sheets; Workflow and interviews for genomic return of results; Focus groups; App-based personal reports
N = 301+	2	Claudio, 2018 [21]; Heukelom, 2023 [24]	Newsletter, visuals in Spanish/English; Patient portal messaging for pharmacogenomic results

Across the 32 studies, two described RBRR across a small participant cohort, seven reported back to medium-sized cohorts, 11 to large cohorts, and two to very large cohorts (Table 2). Smaller studies (n = 1–10 participants) often relied on highly personalized formats such as handouts, tailored visuals, or interactive co-designed reports- which allowed for intensive engagement with individual participants. Medium-sized studies (n = 11–50 participants) employed a wider range of dissemination formats, including mailed packets, community meetings, audiovisual tools, and physical data visualizations- with several small studies (n = 10 participants) integrating focus groups and participant feedback to refine materials (Table 2). Larger studies (n = 101–300 participants) more frequently incorporated scalable digital platforms such as DERBI, patient-facing portals or app-based reports to accommodate broader cohorts (n = 7). Finally, the largest studies (n > 100 participants) tended to rely on generalized yet accessible strategies such as multilingual newsletters and patient portal messages, designed to reach a large audience efficiently while maintaining clarity. Together, these patterns suggest that dissemination methods were closely aligned with study scale, with smaller samples allowing for more intensive interpersonal engagement and larger samples necessitating scalable digital or standardized communication formats.

Evaluation strategies

While evaluation of RBRR strategies varied widely, the approaches could be broadly grouped into three categories: formative evaluations and two summative evaluations- one focused on usability and comprehension assessments, and the other on outcome-oriented evaluations.

The first category, formative evaluations, was described in 9 studies (28%), with the primary aim of improving report-back materials before dissemination (Table 1). These approaches frequently use focus groups, stakeholder interviews, or community advisory boards to gather feedback on readability, clarity, and cultural appropriateness. For example, Ryan et al. [35] incorporated adolescent and caregiver perspectives, Lynch et al. [28] used focus groups to adapt genomic videos, and Tomsho et al. [40] employed health literacy tools to systemically assess and refine report content [28, 35, 40]. These evaluations underscored the importance of participant-centered design, though they were often resource-intensive and required sustained community engagement. The final two categories are both types of summative evaluations, albeit with different focuses: evaluating how the materials were understood versus the outcome of receiving the materials. Nearly half of the studies (15; 47%) conducted summative evaluations focused on usability and comprehension evaluations of RBRR, using post-report-back surveys, comprehension tests or recall measures to determine whether participants understood their results and found them usable for decision-making (Table 1). For instance, Yelton et al. [43] evaluated recall and comprehension of pictorial report-back materials, while Giannini et al. [10] tested comprehension of PFAS biomarker reports and observed that more than one-third of participants reported altering household behaviors [10]. Brody et al. [19] and Boronow et al. [5] combined surveys with digital usage data from DEBRI to evaluate comprehension, usability and emotional responses [5, 19]. These evaluations highlighted that visual aids, contextual comparisons and plain language improved comprehension, though challenges with graph literacy and overly technical jargon persisted [4, 39].

Six studies (19%) conducted a summative evaluation focused on the outcome of receiving RBRR, specifically assessing the impact of RBRR on participant behaviors, emotions or broader advocacy. For example Claudio et al. [21] surveyed parents following group meetings about phthalate exposures and found that post-RBRR participants displayed improved knowledge and had planned behavior changes [21]. Rochester et al. [11] found that 72% of participants adopted exposure-reduction behaviors after receiving individualized results, while Rock et al. [33] and Schollaert et al. [36] linked dissemination events to collective advocacy action in community contexts [11, 33, 36]. Additionally, Perovich et al. [32] demonstrated that physicalized data formats could provoke strong emotional engagement, even if comprehension varied [32]. These studies indicate that RBRR has the potential to motivate both individual health-protective behaviors and community-level action, although few evaluated long-term outcomes; only nine studies noted the duration of time between study completion and dissemination of RBRR.

Participation engagement

Participant engagement in the design and implementation of RBRR was described in 13 of the 32 studies (41%). Engagement strategies ranged from advisory board input (n = 5) and community engagement studios or focus groups (n = 8) to iterative co-design processes (n = 4), in which participants reviewed and refined draft materials (Table 1). These efforts frequently informed decisions about literacy level, format, and dissemination modality, ensuring materials were culturally relevant and aligned with participant needs.

In 6 studies (19%), participants were recruited from ongoing or previously established research cohorts, which helped foster trust and streamline engagement activities. For instance, Boronow et al. 2017 [5] and Brody et al. [19] collaborated with the Child Health and Development Studies cohort, and Cardona-Cordero et al. [20] engaged Mi PROTECT participants in co-developing a mobile platform to deliver results. These pre-existing relationships were often credited with enhancing participant willingness to provide feedback and co-create materials [20]. All studies that embedded engagement early in the RBRR process also included a well-described summative evaluation to identify participant satisfaction with the materials.

Ethical alignment of report-back strategies

To understand how bioethical principles may inform RBRR development, the studies were coded using the bioethical principles of respect for autonomy, beneficence, non-maleficence, and justice (Table 3).

Table 3.

Bioethical principles supporting RBRR development

Bioethics Principle	Aligned RBRR Strategies	Example Studies
Respect for autonomy	Co-development: participant engagement, tribal tailoring, co-design	Rohlman, 2016 [34]; Ryan, 2023 [35]; Lynch, 2022 [28]
	Visuals: plain language, accessible plots, readability	Boronow, 2023 [18]; Haynes, 2016 [23]; Claudio, 2018 [21]; Giannini, 2018 [10]; Samon, 2023 [4]
	Evaluation via interviews/focus groups: honoring participant voice	Boronow, 2017 [5]; Lewis, 2021 [27]; Riley, 2024 [3]; Kaphingst, 2021 [25]
Beneficence	Actionable report content: behavior tips, exposure reduction guidance	Rochester, 2024 [11]; Boronow, 2023 [18]
	Tailored/contextualized reporting: relevance to participant experience	Brody, 2021 [19]; Tomsho 2022 [40]; Cardona-Cordero, 2023 [20]
	1-on-1 meetings: individualized support and opportunity for questions	Haynes, 2016 [23]; Rock, 2021 [33]
Nonmaleficence	Testing of materials: reducing harm from confusing reports, opportunity for feedback	Perovich, 2021 [32]; Samon, 2023 [4]
	Clear data visuals: minimizing misinterpretation	Boronow, 2023 [18]; Haynes, 2016 [23]; Claudio, 2018 [21]; Giannini, 2018 [10]; Samon, 2023 [4]
	Personal over aggregate-only reporting: respectful, individualized results	Yelton, 2023 [43]; Brody, 2021 [19]; Boronow, 2023 [18]
Justice	Multilingual and accessible formats: inclusive communication	Schollaert, 2021 [36]; Claudio, 2018 [21]
	Community-based dissemination: equity in participation	Rock, 2021 [33]; Haynes, 2016 [23]
	Comparative strategies across populations: exposure disparities awareness	Boronow, 2023 [18]; Giannini, 2018 [10]; Tomsho, 2022 [40]

While none of the studies explicitly referenced the bioethical framework, components of the studies were aligned with the different principles (Table 4).

Table 4.

RBRR thematic analysis codebook

Theme	Code/Subtheme	Example Study (Citation)	Supporting Quote/Summary Example
RBRR Materials	Participant-centered co-design	Ryan et al. 2023 [35]	Adolescents and caregivers co-developed electronic report-back materials using interactive visuals, emphasizing iterative design and accessibility.
	Literacy and readability	Tomsho et al. 2022 [40]	Feedback from participants led to the simplification of language and inclusion of culturally tailored explanations to promote comprehension.
Dissemination	Digital platforms and portals	Boronow et al. 2017 [5]	The DERBI platform allowed participants to access personal exposure results digitally, with 90% reporting the interface as clear and helpful.
	In-person and community meetings	Patel et al. 2021 [31]	Reports were shared in person with tribal members, fostering culturally sensitive discussion and comprehension of dietary contaminant risks.
Evaluation	Mixed-method feedback	Samon et al. 2023 [4]	Evaluations combined focus groups and Likert surveys; participants preferred simple visuals and broad explanations.
	Longitudinal tracking	Rochester et al. 2024 [11]	Surveys at six months post-report-back revealed 72% reported behavioral changes, supporting sustained impact.
Participant Engagement	Advisory boards and focus groups	Lynch et al. 2022 [28]	A pediatric research board co-developed video-based education tools to enhance engagement and retention.
	Reciprocal, community-led design	Serrano-Salomón et al. 2024 [37]	The process emphasized “reciprocal reporting,” ensuring community ownership and environmental justice framing.
bioethical considerations	Autonomy and informed choice	Terek et al. 2022 [6]	Parents reported emotional tension in receiving PRS reports, emphasizing the need for sensitive communication.
	Transparency and justice	Riley et al. 2024 [3]	Revised report formats empowered participants to use results for advocacy, demonstrating justice-oriented communication.

The principle of respect for autonomy was most evident in 15 studies (47%), which emphasized comprehension and participant-centered design. Strategies such as simplified language, layered explanations, and digital dashboards that allowed participants to revisit their data supported informed engagement with results [5, 22].

Beneficence was reflected in 17 studies (53%) that embedded actionable recommendations into RBRR materials. Reports that included specific strategies to reduce exposure or framed results within the context of study populations more frequently showed behavior change. For example, Claudio et al. [21] and Rochester et al. [11] both reported measurable adoption of exposure-reducing practices following receiving results [11, 21]. Notably, 7 studies (22%) highlighted that participants still valued data even when no health-based benchmarks were available, as long as the results were contextualized with peer or community averages [3, 19, 10, 29, 41].

At the same time, 10 studies (31%) described the emotional complexity of receiving results, with participants reporting anxiety, worry or confusion alongside feelings of empowerment and curiosity (Table 1) [4, 6, 52]. This tension between beneficence and non-maleficence was addressed in 7 studies (22%) that incorporated safeguards to reduce potential harm. These strategies include pairing visuals with plain-language explanations, offering one-on-one or group consultations, and layering results so participants could control the depth of information they engaged with [3, 4, 36].

Finally, the principle of justice was addressed in 12 studies (38%) through equity-focused RBRR strategies that accounted for differences in literacy, digital access, and cultural relevance. Examples included multilingual materials, culturally adapted dissemination with Indigenous communities, and the application of low-literacy design frameworks [4, 20, 33, 34, 36, 39]. Through these studies, the principle of justice was operationalized by ensuring that materials were inclusive and accessible across various populations.

Discussion

RBRR strategies

This review identified that just over one-quarter of studies (n = 8, 25%) provided detailed accounts of how and why RBRR materials were developed, while the majority (n = 24, 75%) offered only minimal description. Approximately half of the studies (n = 14, 47%) used individualized results with contextualized comparisons, while just under half (n = 13, 41%) reported aggregate findings, sometimes layering both formats in multi-modal approaches (n = 10, 31%). The remaining studies (n = 4, 12%) focused on developing RBRR tools or frameworks without conducting direct report-back to participants. Dissemination was also shaped by literacy level, preferred communication channel, and the degree of prior participant engagement. Importantly, scalability emerged as a key consideration: larger studies (n = 7, 22%) often relied on automated mailings, secure portals or apps, while smaller cohorts (n = 12, 38%) incorporated more personalized approaches.

Evaluation strategies and dissemination formats varied widely across studies, reflecting the growing diversity of RBRR practices. Most studies evaluated report-back processes through post-report-back surveys (n = 22, 69%), semi-structured interviews (n = 18, 56%), or focus groups (n = 14, 44%), while a smaller subset (n = 9, 28%) explicitly used formative evaluation to refine materials before dissemination. Report-back strategies encompassed both the modes and materials used to communicate results- ranging from digital platforms and mailed packets to in-person meetings, audiovisual tools, and novel tactile formats such as wearable data visualizations. Many studies (n = 10, 31%) employed multi-modal approaches combining physical and digital materials to enhance accessibility and engagement [3, 19–21, 23, 29, 33, 34, 36, 43]. Digital dissemination offered convenience and the ability to revisit results, while in-person strategies provided real-time clarification, emotional support, and opportunities for dialogue.

Outcomes

Outcomes most frequently reported included increased comprehension or knowledge (n = 20, 63%), motivation to adopt exposure-reducing behaviors (n = 6, 19%), and enhanced community advocacy (n = 5, 16%). However, several barriers persisted, such as technical jargon (n = 6, 19%), lack of clear mitigation options (n = 5, 16%), and participant anxiety when confronted with elevated exposures (n = 10, 31%)- underscoring the ethical tension between beneficence and non-maleficence in RBRR design. Taken together, these findings suggest that RBRR is most effective when dissemination and evaluation strategies are layered- pairing formative feedback to guide design, usability testing to ensure comprehension, and outcome assessments to capture the broader impacts of report-back on behavior, trust and engagement.

Current data gaps and future recommendations

These findings overall point to several recommendations for the development, dissemination and evaluation of RBRR (Table 5).

Table 5.

Synthesized recommendations for future RBRR development, dissemination, and evaluation

	Recommendations
Report-Back Development	• Use both personalized and aggregate results- personal results motivate action but can raise concern; aggregate results aid advocacy. • Explore multi-modal materials (booklets, tactile graphics, wearables) to increase participant engagement and/or bridge the digital divide. • Provide multiple forms of dissemination (e.g., mailed, digital, visual aids) to reach diverse groups.
Dissemination Strategies	• Use digital platforms (DERBI, portals) for convenience and access, but address equity and navigation barriers. • Employ in-person methods (one-on-one, forums, group meetings) to build trust and improve comprehension. • Combine formats (multi-modal dissemination) for stronger engagement. • Match dissemination to participant size: smaller = interactive, greater opportunity for participant engagement or in-person formats; larger = scalable (digital/mailed). Consider logistic and economic constraints when selecting a dissemination strategy.
Evaluation Approaches	• Gather participant feedback on clarity, usability, and emotional response. Consider combining formative and summative evaluations. Select outcomes prior to developing RBRR materials and define measurable indicators. Consider using a health or communication framework to guide evaluation. • Assess differences and similarities in RBRR preferences (e.g., linguistic, cultural, educational) across demographic and cultural groups to ensure equity.
Participant Engagement	• Involve participants early in the design process through advisory boards, focus groups, or engagement studios. • Develop formative evaluation approaches that integrate opportunities for participant engagement and input.
RBRR documentation	• Clearly describe the stages of RBRR development in study methodology, including rationale for chosen format, literacy level targets and measurement method, and any frameworks or tools used (e.g., Clear Communication Index).• Document if and how participant feedback informed final materials to improve reproducibility and transparency. • Provide de-identified example RBRR reports as part of supplemental materials when publishing on RBRR.

Our results suggest that researchers should explicitly describe the rationale for their chosen format, literacy targets, and the frameworks used to ensure accessibility, and should integrate participant input early in the development process through focus groups, advisory boards, or co-design activities. Dissemination strategies should be matched to both the study’s size and participants’ needs. While large-scale studies may require scalable approaches such as automated mailing systems, portals or mobile applications, they should be paired with strategies to compensate for differences in digital accessibility. Smaller studies may be better positioned to employ more interactive methods, such as one-on-one consultations or community meetings, which foster trust and understanding but are less feasible at scale. Hybrid approaches, where broad dissemination is supplemented by targeted follow-up for participants with elevated results (e.g., increased genetic risk or exposure above levels of health concern), may provide a balance between efficiency and equity.

Our work also highlights the benefit of including evaluation as an integral part of RBRR and should be transparently described in study protocols and publications. The type of evaluation should be identified before RBRR development to ensure it aligns with the desired outcomes and can be linked to measurable indicators. In addition to reporting the use of surveys, interviews, or comprehension tools, evaluations should assess outcomes such as behavior change, recall of results, and engagement in advocacy, or describe why such an approach was not undertaken. In our limited sample, we noted that reports that include actionable strategies, provide context for results even when health-based benchmarks are unavailable, and anticipate emotional responses by offering follow-up support also foster meaningful and ethically sound engagement.

Despite progress in the field, critical gaps remain. Only one-quarter of the studies (n = 8, 25%) provided detailed documentation of the RBRR development process, limiting reproducibility and transparency. Greater use of communication frameworks and literacy testing tools may strengthen RBRR design. The field also lacks standardized evaluation metrics, particularly for outcomes like behavior change (n = 6, 19%) and community advocacy (n = 5, 16%), making it difficult to compare across studies. Longitudinal evaluation of RBRR outcomes was rare (n = 3, 9%), with studies reporting follow-up at 8–12 weeks [10], 6 months [11], and one year [36]. This type of evaluation is essential for assessing sustained exposure reduction and collective action [11, 19, 37]. In addition, more research is required to address how to communicate data that lacks clear health-based benchmarks- a scenario described in 7 studies (22%)- for which few standardized solutions exist (Table 1). Equity also remains a central challenge, and over one-third of studies (n = 12, 38%) explicitly described the need for culturally tailored, multilingual or low-literacy strategies. Future work should continue to expand these efforts to ensure that RBRR fulfills its ethical commitments to autonomy, beneficence, non-maleficence and justice, and to maximize its value as an ethically essential component of health and environmental research.

We noted that of the studies assessing outcomes following RBRR, they broadly assessed metrics that align with the Knowledge-Attitude-Behavior (KAB) model, which may provide a valuable framework for structuring RBRR protocols [53]. In this model, knowledge gained through clear and accessible communication is expected to influence participants’ attitudes toward their personal information (e.g., environmental exposure, genetic risk, etc.), which in turn motivates protective behaviors. Our review suggests that the most comprehensively described RBRR protocols followed this framework [3–5, 10, 11, 18, 28, 32, 33, 35, 36, 39, 43]. For example, reports that emphasized comprehension through simplified language, contextual comparisons and culturally tailored visuals support the knowledge domain of health. When combined with messaging that framed results as personally relevant and offered concrete comparisons or narratives, participants’ attitudes toward environmental risk shifted, often heightening concern and readiness to act. Finally, RBRR that incorporated explicit behavioral guidance- such as exposure-reduction strategies, links to community resources, or actionable calls to advocacy- often resulted in measurable changes in household practices or community engagement (e.g., Giannini et al. 2018, Rochester et al. 2024) [10, 11].

The KAB model is not the only way to conceptualize RBRR outcomes. Other frameworks, such as those that emphasize factual knowledge, knowledge sufficiency (feeling ready to make informed decisions), and response efficacy (belief that protective behaviors will be effective), may offer more nuanced approaches to designing RBRR materials [12, 54]. This suggests that investigators should begin by identifying the primary goals of their RBRR- whether to simply increase knowledge, shift attitudes, build confidence in protective actions, or motivate behavior change- and design both the materials and evaluation strategies to align with those goals. Explicitly linking RBRR development to these outcome targets could improve reproducibility and help ensure that evaluation strategies meaningfully capture participant comprehension, sufficiency and action-readiness.

Reports should ensure that participants have the knowledge to understand their results by prioritizing multi-modal materials that address the cultural, linguistic and educational context of the communities they are designed for. Next, RBRR has the potential to shift attitudes by framing results in ways that are personally meaningful, transparent, and trust-building, while addressing potential emotional concerns. Finally, protocols should identify potential evidence-based recommendations (e.g., exposure mitigation, exposure reduction, etc.) and incorporate them directly into RBRR materials and follow-up processes, providing clear strategies for individual or collective action even in contexts where health-based benchmarks are unavailable. These strategies should span a financial spectrum (e.g., low-cost to high-cost options). They should be clearly presented as optional, leaving the decision to the participant if they choose to undertake any action, in alignment with the bioethical principle of respect for autonomy. By aligning RBRR protocols with clear desired outcomes, researchers can move beyond simply informing participants to promoting sustained, health-protective behaviors and community advocacy, thereby strengthening both the ethical and practical impact of report-back. As summarized in Table 5, our recommendations emphasize protocols that move beyond reporting results to actively supporting comprehension, attitudinal shifts and behavior change, consistent with the Knowledge–Attitude–Behavior model.

Conclusion

This review highlights the various strategies used to return research results to participants across different research fields- emphasizing the importance of tailoring communication to both the content of the data and the needs of the audience. Evidence indicates that multi-modal approaches, combining visual summaries, individualized data, and interactive discussions, are particularly effective in enhancing comprehension and engagement. Strategies that prioritize transparency, accessibility, and cultural relevance not only improve participants’ understanding but also foster trust and ongoing collaboration between researchers and communities.

Ethical alignment emerges as a critical component of developing effective report-back- ensuring that participants’ autonomy, comprehension, and emotional well-being are respected. By integrating participant preferences, addressing potential concerns, and providing actionable context for results, researchers can maximize the utility of RBRR efforts while minimizing unintended harms.

Overall, this synthesis underscores that RBRR is not a one-size-fits-all process; instead, it requires deliberate planning, iterative evaluation, and responsiveness to participant needs. By prioritizing both effectiveness and ethical responsibility, RBRR can serve as a model for meaningful participant engagement in all applicable fields of research.

Abbreviations

RBRR

Reporting-back of research results

CPBR

Community-based participatory research

Authors’ contributions

All authors contributed substantially to the work. DR, SK, and FG conceived and designed the research, acquired data, and interpreted the results. DR: fundinq acquisition, project administration, supervision. SK: supervision. FG and TV analyzed data and reviewed thematic analyses. MT, LB, KW, JH: interpreted results, supervision. FG drafted the manuscript, and all authors contributed to revisions and approved the final version.

Funding

Research reported in this publication was supported by the National Institute of Environmental Health Sciences of the National Institutes of Health under Award Numbers P30 ES030287, P42ES016465, T32ES007060 and R01 ES036256. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.