“I Feel Like I am Part of Something Bigger Than Me”: Methodological Reflections From Longitudinal Online Participatory Research

Connection and care often sit at the unexamined, perhaps implicitly devalued margins of participatory research. In this paper, we articulate connection and care as affective, social, political, and epistemological processes core to participatory work. We explore how these processes were centered in a youth participatory action research project about mattering for students of color at the youths’ middle school. The project spanned two phases: first with middle school youth and university members as co-researchers and co-designers, and second as a team of university researchers that authored this paper. Drawing from transcripts and other artifacts from both teams’ meetings, we use poems and imagery to access felt experiences, to portray connection and care in action, and to (re)imagine humanizing research, schooling, and social organization. Through these poems and images, we invite readers to consider how the practice of participatory research can create and enact more humanizing ways to be together in a world that constantly challenges the fullness of our humanity.

Many people residing in nursing or residential care homes (also called long-term care facilities) live with physical or cognitive difficulties. Staff working in these environments often help residents (particularly those with more advanced dementia) with their personal care needs, including maintaining mouth care and health. Poor oral health is associated with many difficulties, including increased risk of respiratory problems, pain and discomfort. Yet, concerns have been raised that staff may not have the knowledge and skills to effectively support residents with oral care and health. There is therefore an important gap between what is known about the importance of maintaining oral health (scientific evidence) and daily practice in long-term care environments. To work with care home staff: (1) to create a learning culture to address how to promote mouth care for residents, particularly when a resident resists support with this aspect of care; and (2) to effect mouth care practice changes (if required) using participatory and inclusive research cycles. We conducted a participatory research project to address this important area of care. Four participatory research 'cycles' were conducted. Cycle one explored existing literature to develop accessible guidance on strategies that staff could use to support residents to maintain and improve oral care, particularly when a resident may resist such care. Cycle two built on this review to determine knowledge levels within the care team. This highlighted deficiencies in staff knowledge, skills and competence for providing mouth care and their need for training to address this. Cycle three identified evidence-based strategies to develop staff understanding and knowledge. Cycle four brought together experts from nursing, dentistry, behaviour change, systematic reviews and care homes research to develop a grant application to progress this work further. This paper provides an example of the processes undertaken in a participatory research project, bringing together science and practice to improve an essential area of care. Using participatory research approaches in this setting can allow the effective translation of uncertainties in care and practice into questions that can be addressed by research, leading to meaningful outcomes for those living and working in care homes.

BackgroundThe involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, can be found. This study aims to explore the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states who were involved in a participatory research project.MethodsIn this study with a combined participatory and qualitative research approach, we used a reflexive thematic analysis approach to systematically analyse open reflection reports from researchers and co-researchers with lived experience of psychosis high risk states, who took part in a participatory research project (VOICE). All participants (n = 12) were asked to anonymously write reflection reports on their subjective experience of participatory research. There were no formal or content-related instructions for writing the reflection reports. Reflection reports provided by eight participants were qualitatively analysed.ResultsThree themes were identified from the analysis of the reflection reports. First “When uncertainty becomes a unifying element – reflecting on expectations and roles”. Second “Fostering community growth: creating an environment for collaborative teamwork as well as new and creative directions”. Third “Exploring personal and scientific achievements of the project”. At the outset of the research project, the researchers’ focus was on expectations and reflections on their role within the project, accompanied by a feeling of uncertainty. Subsequently, a sense of community developed within a favourable study framework. Finally, attention focused on research project outcomes and personal achievements within the project.ConclusionThe analysis of the anonymous reflection reports on a participatory research project indicates that there was a positive collaboration between participants with and without lived experience of psychosis high risk states, wherein they were able to interact on an equal footing. Participants reported an experience of equal cooperation and gained relevant personal insights from project participation. Although we do not have clear evidence of experiences of power imbalances or perceived hierarchies based on the analysed reports, these cannot be ruled out and have to be addressed in future research.

Replication and translation of co-innovation: The influence of institutional context in large international participatory research projects

A participatory HIV research project was conducted with sex workers (SW) and men who have sex with men (MSM) to understand epidemiological HIV dynamics and associated sociobehavioural factors among these vulnerable groups. We examine the impact of this project, critically analysing the processes undertaken and focusing on the advantages and the challenges faced. A partnership was built through two Community Advisory Boards (CABs) and a Scientific Commission (SC). Regular meetings, workshops, and focus groups were conducted with CABs, SC, and partners to assess the processes and outcomes of the project implementation. This participatory research produced change processes with impacts at different levels: individuals, community organizations, health professionals, academics, and policy-makers. Advantages of the participatory process were encountered but also challenges, evidencing the dynamic and complex nature of each project's stage. This project showed that participatory research can work as an intervention. Indeed, it triggered a dynamic and interactive process of knowledge coproduction and translation into effective community-oriented health actions and policies. The participatory research reproduced an innovative alliance for HIV prevention and sexual health promotion responsive to local needs and priorities. Further efforts are needed to systematize and evaluate the processes and impacts of participatory health research.

This paper explores the application of ethic of care principles to research practice. It reflects on a research partnership between a voluntary-sector organisation (VSO) for older people and a university research centre (URC). The focus is a participatory research project on older people and well-being in which older volunteers were involved as co-researchers. The shared values of the VSO's culture of practice and the participatory approach of the university researchers have enabled joint research projects to be developed within an ethic of care framework. The model sought to break down the barriers between expert and lay knowledge and encouraged the mutual recognition, sharing and validating of different areas of expertise. An ethic of care framework offers context-specific ways of understanding and responding to the ethical challenges of undertaking participatory research, and to the relational aspects of well-being identified by older people during the course of the work.

Background: Ethical care is concerned with aspects of work that may influence nurses’ ethical behavior. Intensive care units might expose nurses to moral judgment while caring. This qualitative study aimed to explain the nurses’ experience of moral judgment in intensive care units. Methods: The present qualitative study was conducted using the conventional content analysis method. The participants of the study included 23 nurses working in the intensive care units (ICU, CCU, NICU) of four hospitals affiliated with Sabzevar University of Medical Sciences who were selected using purposive sampling. The data were collected through semi-structured interviews. The questions asked in the interviews included, "Would you please describe one working day of yours caring in the intensive care units?" and "While caring, did you have to hesitate to make a decision ethically? If yes, would you describe that situation?" The Data were analyzed using the qualitative content analysis method proposed by Graneheim and Lundman. Results: Data collection and analysis led to the identification of 1 theme, 6 categories, and 23 subcategories. The identified theme was "intensified tension and conflict following ethical patient care in the intensive care units" and the categories were "repeated exposure to stress in ethical patient care in the intensive care units", "ethical care originated from the nurses’ beliefs", "moral judgment in care affected by the patient’s clinical condition", "moral judgment as a consequence of clinical judgment", "ethical care based on organizational and legal conditions in the moral environment", and "requirements of ethical care". Conclusion: The nurses in the intensive care units deal with ethical issues and are under a lot of stress. The results of this study can help nursing authorities pay more attention to developing ethical knowledge and ethical considerations in hospitals and provide organizational support to identify the moral tensions of nurses in intensive care units.

The process of conducting peer interviews has not been widely reported on as a participatory method. Youth gardens are known to support individual and community health and well-being. Producing for the Future utilized the principles of community-based participatory research within a gardening and microenterprise program for low-income youth. In addition to several mixed-methods data collection techniques, a process was implemented in which youth participants designed, conducted, and debriefed peer interviews in order to address their own questions about program impacts. Participants in the peer interview process observed four emergent themes, which were not identified elsewhere in the data, focusing on individual outcomes and the successes and challenges of implementation within unique community settings. A methodological discussion of the process of peer interviewing within a participatory research project is presented. Researchers found that the benefits of the peer interview process included high levels of youth engagement in research, shared learning and new ideas generated by youth, and building youth capacity for critical social awareness. Researchers present lessons learned from the peer interviewing process, as well as implications for using peer interviewing in future participatory research and evaluation projects.

In sustaining excellence in a globalized Malay and Islamic world, it is important to investigate the influence of the Malaysian cultural background in many areas including in the area of researching. This paper was part of a larger study that investigated the influence of Malay values and culture in conducting a participatory action research project in Malaysia. The participatory action research project, which originated from the Western philosophy, was conducted by a research team which consisted of the first author of the current paper and two Malay lecturers from Bakti Polytechnic (pseudonyms). Through qualitative methods such as observation, informal conversations, journal reflections and semi-structured interviews, this study investigated the experiences of the two Malay lecturers in negotiating the Western-based concepts in a participatory action research project. Due to the importance of reflection and action in a participatory action research, data was analysed through critical reflective analysis steps (Puteh-Behak, Using a multiliteracies approach in a Malaysian Polytechnic classroom: A participatory action research project. Doctoral thesis, University of Southern Queensland, Queensland, Australia, 2013) which included the process of observing and noting personal reflections, confronting and thinking and taking action. Findings suggest that the Malay lecturers’ social hierarchy background affected the way they negotiated the Western-based egalitarian concept in participatory action research.

This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study.

The lack of attention to gender and intersectionality is still a major problem in all forms of research, sometimes within feminist-oriented projects. Participatory researchers can inadvertently reinforce gender-neutral approaches by failing to explicitly state what feminist and gender diversity principles guide their research, resulting in superficial outcomes only. Chapter 6 focuses on feminist Participatory Action Research (PAR) and gender diversity considerations to highlight the central importance of gender equality to participatory research models. The author explores the meaning of feminist research and highlights tensions in contemporary discussions of transfeminism. She discusses the potential of feminist PAR and participatory research in gender diversity studies to explore unique experiences through a gender analysis. The chapter vignette is about gatekeeping, based on the author’s experiences in participatory research projects with women co-researchers. She explains how white feminists and male community leaders act as gatekeepers, and shares thoughts on how researchers might respond to gatekeeping issues.

Listening to and involving children and young people (CYP) in decision-making and services that affect them has become increasingly important. Since the 1990s, there has been a rise in participatory approaches and research with CYP. Both models of participatory research and practice in this area are being developed. This research aims to enhance developments in participatory research with CYP by learning from the experiences, perspectives and accounts of CYP who have experienced a participatory project.\nThe participatory research project that participants in this research experienced was The Verbatim Formula (TVF), a creative residential workshop for care-experienced young people, using applied art practices to investigate their experiences of care and plans for their futures.\nThis research used an Interpretative Phenomenological Analysis (IPA) approach to explore how the young people taking part in TVF, experienced the project. A sample of five young people, ranging from the age of 16 to 21 years old took part in face-to-face semi-structured interviews.\nThe findings of this research focused on three main themes: the young people made sense of their experiences of the project through participating; learning and interpersonal relationships. The richness and power of how young people experienced the project highlighted the possibilities of what can be gained by asking CYP about their experiences and how these could develop participatory research practices and thinking. There are also implications for educational psychology practice and the potential for future research with Educational Psychologists is outlined.

Shared power and democratic decision making are core epistemological commitments of participatory action research. Scholars who engage in participatory action research with youth seek to share ownership and disrupt adult/child or knower/learner binaries traditional in the Global North, in which adults are the active agents who own and transfer knowledge to children, who remain in a passive role. Yet, we have noticed during several of our projects with youth that, despite our best efforts, these knower/learner binaries can be reproduced with younger coresearchers as we exhibit care in the form of protection and provision of security. In this article, we examine three scenes from our recent youth participatory action research projects using reconstructive horizon analysis to surface and explore backgrounded validity claims that highlight the tensions between our efforts to democratize the research process and our commitment to an ethic of care for those with whom we engage in participatory knowledge production. We suggest that explicit attention to these tensions as part of the inquiry process is important for making participatory research with youth a more equitable endeavor and to build the validity of such work.

All authors must have made a significant contribution to the study and must be so familiar with the original data that, e.g., every co-author is able to present a short presentation of the material. To take responsibility for the manuscript’s content, it is crucial that every author has read the paper and has checked it for its completeness. Should any part of the material be found to be duplication or faulty in any way, all authors share the responsibility. Should an author choose not to further co-author a manuscript, not only the author but all co-authors must agree to this in written form. To many authors, it is not clear that their material submitted to a journal is actually considered a duplicate publication. Already published material is given by the following examples: Any extensive abstracts that contain original data (e.g., published in proceedings) that are shared to the community beyond the meeting attendees are considered a publication. If material is published on the website such as a poster or a lecture this too is a publication. Also any reports that are widely circulated can be considered as a publication. Taken together not only publications in journals that are peer reviewed are considered as prior publications. Any manuscript that appears in a journal, be it non-peer reviewed or an online-only publication, is considered to be a previously published article. This also includes manuscripts that have appeared in book chapters. Exceptions are made. For instances, dissertations that appear on an institutional website need not be considered duplicate publications. Moreover, if fractions of the material have been published on a website, this may not be considered of previous publication, however, the editor must be informed that such material exists so that the editor can check for the extent and correctness of the material. At the end of the manuscript, all sources supporting the work should be cited. This is independent of the nature of the source, be it an institutional fund or if support stems from an organization supporting specific interests or cooperate affiliations. Disclosure of conflict of interests does not affect the acceptability of the manuscript. However, it can be important for the reader to know if the authors might be compromised, knowingly or unknowingly, in any manner. The readers should know if all authors had full control of the data in terms of not only assessing the data but also circulating the data. Moreover, it is important to identify if there are financial conflict of interest. Authors who own a significant amount of stocks in a firm or receives honoraria for consulting or lecturing in significant amounts (10,000€ or more) should disclose this information upon submission of the manuscript. All information will be held in confidence during the review process. Please note that also patent issues and equity interests may be considered as a potential conflict of interest. Editors and reviewers may also have conflict of interest. It is the responsibility of the editors and reviewers to immediately identify a potential conflict of interest be it in scientific nature or financially. A common conflict of interest is given when reviewers evaluate a manuscript from authors they have previously collaborated with. In this case, evaluation should be declined. Plagiarism is given when experiments of others are repeated without acknowledgement in the manuscript. Authors are often unaware of the fact that auto-plagiarism takes place when an author pastes and copies sections of their own previous manuscripts such as the methodology. To avoid auto-plagiarism, it is essential to identify that this content has been published previously or simply add a statement that the methodology can be obtained elsewhere followed by citation of this source. Not only will referencing previous work prevent auto-plagiarism, it will also help the journal remain within its page caps. Should a reviewer identify possible fraud or plagiarism, this must be communicated to the editor. The editor will then transfer the issue to the publications committee of the journal, which will then take contact to the authors to receive all relevant information before deciding upon further steps. Should a serious case of fraud or misconduct be identified, this may result in notifying local institutions and retraction of the article. Throughout the physiological societies, it is common understanding that animal experiments can only be justified when alternative methods cannot to same extent warrant insight into science or biomedical training. Nonetheless, it is important that the numbers of animals used as well as the species and the experimental protocol must be considered to minimize adverse effects on the animals such as pain. Attention is required to cohere with animal welfare regulations and best practice. All procedures must confirm with the institutional guidelines for animal care as well as with national and international laws, regulations and understanding. Any animals used in the protocol must have been obtained officially respecting local and national laws and regulations. All measures to minimize unfavourable effects to animals should be used as long as these measures (such as analgesics and anaesthesia) do not interfere with the goal of the study. Muscle relaxants do not eliminate pain nor do they provide anaesthesia. The use of muscle relaxants must therefore be accompanied by appropriate anaesthesia and analgesia. Should the animals be sacrificed after experimentation, the method used must be stated and be in line with respective laws, regulations and guidelines. In addition to adhering to local, national and international laws, it is important that all manuscripts involving human being have been made in accordance with the declaration of Helsinki.11 The Declaration of Helsinki is an official policy document of the World Medical Association (WMA), the global representative body for physicians. It was first adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and amended by the 29th WMA General Assembly, Tokyo, Japan, October 1975; 35th WMA General Assembly, Venice, Italy, October 1983; 41st WMA General Assembly, Hong Kong, September 1989; 48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996; 52nd WMA General Assembly, Edinburgh, Scotland, October 2000; and 59th WMA General Assembly, Seoul, South Korea, October 2008. Note of Clarification on Paragraph 29 added by the WMA General Assembly, Washington 2002. Note of Clarification on Paragraph 30 added by the WMA General Assembly, Tokyo 2004. Here, the 35 paragraphs are given as follows. 1. The World Medical Association (WMA) has developed the Declaration of Helsinki as a statement of ethical principles for medical research involving human subjects, including research on identifiable human material and data. The Declaration is intended to be read as a whole and each of its constituent paragraphs should not be applied without consideration of all other relevant paragraphs. 2. Although the Declaration is addressed primarily to physicians, the WMA encourages other participants in medical research involving human subjects to adopt these principles. 3. It is the duty of the physician to promote and safeguard the health of patients, including those who are involved in medical research. The physician’s knowledge and conscience are dedicated to the fulfilment of this duty. 4. The Declaration of Geneva of the WMA binds the physician with the words, ‘The health of my patient will be my first consideration’, and the International Code of Medical Ethics declares that ‘A physician shall act in the patient’s best interest when providing medical care’. 5. Medical progress is based on research that ultimately must include studies involving human subjects. Populations that are underrepresented in medical research should be provided with appropriate access to the participation in research. 6. In medical research involving human subjects, the well-being of the individual research subject must take precedence over all other interests. 7. The primary purpose of medical research involving human subjects is to understand the causes, development and effects of diseases and improve preventive, diagnostic and therapeutic interventions (methods, procedures and treatments). Even the best current interventions must be evaluated continually through research for their safety, effectiveness, efficiency, accessibility and quality. 8. In medical practice and in medical research, most interventions involve risks and burdens. 9. Medical research is subject to ethical standards that promote respect for all human subjects and protect their health and rights. Some research populations are particularly vulnerable and need special protection. These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence. 10. Physicians should consider the ethical, legal and regulatory norms and standards for research involving human subjects in their own countries as well as applicable international norms and standards. No national or international ethical, legal or regulatory requirement should reduce or eliminate any of the protections for research subjects set forth in this Declaration. 11. It is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy and confidentiality of personal information of research subjects. 12. Medical research involving human subjects must conform to generally accepted scientific principles, be based on a thorough knowledge of the scientific literature, other relevant sources of information and adequate laboratory and, as appropriate, animal experimentation. The welfare of animals used for research must be respected. 13. Appropriate caution must be exercised in the conduct of medical research that may harm the environment. 14. The design and performance of each research study involving human subjects must be clearly described in a research protocol. The protocol should contain a statement of the ethical considerations involved and should indicate how the principles in this Declaration have been addressed. The protocol should include information regarding funding, sponsors, institutional affiliations, other potential conflicts of interest, incentives for subjects and provisions for treating and/or compensating subjects who are harmed as a consequence of participation in the research study. The protocol should describe arrangements for post-study access by study subjects to interventions identified as beneficial in the study or access to other appropriate care or benefits. 15. The research protocol must be submitted for consideration, comment, guidance and approval to a research ethics committee before the study begins. This committee must be independent of the researcher, the sponsor and any other undue influence. It must take into consideration the laws and regulations of the country or countries in which the research is to be performed as well as applicable international norms and standards but these must not be allowed to reduce or eliminate any of the protections for research subjects set forth in this Declaration. The committee must have the right to monitor ongoing studies. The researcher must provide monitoring information to the committee, especially information about any serious adverse events. No change to the protocol may be made without consideration and approval by the committee. 16. Medical research involving human subjects must be conducted only by individuals with the appropriate scientific training and qualifications. Research on patients or healthy volunteers requires the supervision of a competent and appropriately qualified physician or other health care professional. The responsibility for the protection of research subjects must always rest with the physician or other health care professional and never with the research subjects, even though they have given consent. 17. Medical research involving a disadvantaged or vulnerable population or community is only justified if the research is responsive to the health needs and priorities of this population or community and if there is a reasonable likelihood that this population or community stands to benefit from the results of the research. 18. Every medical research study involving human subjects must be preceded by careful assessment of predictable risks and burdens to the individuals and communities involved in the research in comparison with foreseeable benefits to them and to other individuals or communities affected by the condition under investigation. 19. Every clinical trial must be registered in a publicly accessible database before recruitment of the first subject. 20. Physicians may not participate in a research study involving human subjects unless they are confident that the risks involved have been adequately assessed and can be satisfactorily managed. Physicians must immediately stop a study when the risks are found to outweigh the potential benefits or when there is conclusive proof of positive and beneficial results. 21. Medical research involving human subjects may only be conducted if the importance of the objective outweighs the inherent risks and burdens to the research subjects. 22. Participation by competent individuals as subjects in medical research must be voluntary. Although it may be appropriate to consult family members or community leaders, no competent individual may be enrolled in a research study unless he or she freely agrees. 23. Every precaution must be taken to protect the privacy of research subjects and the confidentiality of their personal information and to minimize the impact of the study on their physical, mental and social integrity. 24. In medical research involving competent human subjects, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information. After ensuring that the potential subject has understood the information, the physician or another appropriately qualified individual must then seek the potential subject’s freely given informed consent, preferably in writing. If the consent cannot be expressed in writing, the non-written consent must be formally documented and witnessed. 25. For medical research using identifiable human material or data, physicians must normally seek consent for the collection, analysis, storage and/or reuse. There may be situations where consent would be impossible or impractical to obtain for such research or would pose a threat to the validity of the research. In such situations the research may be carried out only after consideration and approval of a research ethics committee. 26. When seeking informed consent for the participation in a research study, the physician should be particularly cautious if the potential subject is in a dependent relationship with the physician or may consent under duress. In such situations, the informed consent should be sought by an appropriately qualified individual who is completely independent of this relationship. 27. For a potential research subject who is incompetent, the physician must seek informed consent from the legally authorized representative. These individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the population represented by the potential subject, the research cannot instead be performed with competent persons and the research entails only minimal risk and minimal burden. 28. When a potential research subject who is deemed incompetent is able to give assent to decisions about participation in research, the physician must seek that assent in addition to the consent of the legally authorized representative. The potential subject’s dissent should be respected. 29. Research involving subjects who are physically or mentally incapable of giving consent, for example, unconscious patients, may be carried out only if the physical or mental condition that prevents giving informed consent is a necessary characteristic of the research population. In such circumstances, the physician should seek informed consent from the legally authorized representative. If no such representative is available and if the research cannot be delayed, the study may proceed without informed consent provided that the specific reasons for involving subjects with a condition that renders them unable to give informed consent have been stated in the research protocol and the study has been approved by a research ethics committee. Consent to remain in the research should be obtained as soon as possible from the subject or a legally authorized representative. 30. Authors, editors and publishers all have ethical obligations with regard to the publication of the results of research. Authors have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports. They should adhere to the accepted guidelines for ethical reporting. Negative and inconclusive as well as positive results should be published or otherwise made publicly available. Sources of funding, institutional affiliations and conflicts of interest should be declared in the publication. Reports of research not in accordance with the principles of this Declaration should not be accepted for publication. 31. The physician may combine medical research with medical care only to the extent that the research is justified by its potential preventive, diagnostic or therapeutic value and if the physician has good reason to believe that the participation in the research study will not adversely affect the health of the patients who serve as research subjects. 32. The benefits, risks, burdens and effectiveness of a new intervention must be tested against those of the best current proven intervention, except in the following circumstances: The use of placebo, or no treatment, is acceptable in studies where no current proven intervention exists; or Where for compelling and scientifically sound methodological reasons, the use of placebo is necessary to determine the efficacy or safety of an intervention and the patients who receive placebo or no treatment will not be subject to any risk of serious or irreversible harm. Extreme care must be taken to avoid abuse of this option 33. At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits. 34. The physician must fully inform the patient that the aspects of the care are related to the research. The refusal of a patient to participate in a study or the patient’s decision to withdraw from the study must never interfere with the patient–physician relationship. 35. In the treatment of a patient, where proven interventions do not exist or have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorized representative, may use an unproven intervention if in the physician’s judgement it offers hope of saving life, re-establishing health or alleviating suffering. Where possible, this intervention should be made the object of research, designed to evaluate its safety and efficacy. In all cases, new information should be recorded and, where appropriate, made publicly available.

Participatory research is "a means of producing scientific knowledge in which non-professional and non-scientific actors -whether individuals or groups -are involved in an active, deliberate way" [1] . The non-scientific participants of a participatory research project can intervene at any stage of the scientific research process: data collection, data analysis, as well as during the construction of the initial research problem. These non-scientific actors can be groups of individuals (for example in the form of associations or citizens' collectives); primary or secondary school pupils; students; groups of professionals from a given sector, etc... Participatory research can also involve, for example, patient associations in medical research or victims' associations. Participatory research was initially developed in the fields of agronomy and ecology [1, 2] , where the contribution of a group of non-scientific participants makes it possible to cover a significant geographical range and increase the volume of observational data produced. Within these research communities, skills have been developed to address the specific issues encountered in this type of project, notably at Cirad [3], Inrae [4], IRD, MNHN and Inserm. However, as a result of the increase in the amount of digital equipment available to the overall population (smartphones equipped with sensors, internet access, etc.), such participatory research projects are now being developed in all disciplinary fields, with a wide variety of types of implementation and operating procedures. Participatory research is a tool that helps to establish a dialogue between science and society, one that initiates citizens into a scientific approach. It is also a means to draw on collective intelligence to produce knowledge. However, in order to fully benefit from these approaches, it is important to take account of the specifics of this type of knowledge production in order to maintain the quality and reliability of the scientific results. The aim of this document is to put forward recommendations for all researcher(s) who would like to initiate a participatory research project in whatever discipline. These recommendations include points to which particular attention should be paid and general entry level methodological principles. It should be remembered that the wide variety of types of participatory research projects and disciplinary practices makes it impossible to be exhaustive. For more details on any of the topics discussed here, please refer to the research support services within your own establishment or to the dedicated services such as MNHN's MOSAIC (https://mosaic.mnhn.fr/).