‘Nothing about us without us’ is a phrase reflecting the idea that services and policies should involve the engagement and participation of members of groups and communities affected by that policy. While the concept is said to have originated in early European politics, its use in health care really came to the fore in the 1990’s as a result of disability activism, as a response to the ‘many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice’ (Charlton, 1998:3).

Since that time, the concept of active participation of services users and consumers has been increasingly recognized as important in health care. This idea of nothing about us without us has been taken up in relation to many consumer groups and targeted services (see for example: Frawley & O’Shea, 2020; Mathews, 2021; Nwaba et al., 2021; Oldfield, 2021; Orser et al., 2021; Funnell et al., 2020). The strategies for meaningful inclusion identified by these researchers are particularly important when considering policy, research and services affecting marginalized and minoritized groups. They are also increasingly becoming a requirement of funding bodies, ethics committees and other scrutinizing mechanisms. Many researchers, particularly those working in areas that involve marginalized and minoritized groups are acknowledging and actualizing the importance of taking steps to meaningfully embed community representation in their work and this engagement is referred to by various terms including patient and public involvement (PPI).

In some parts of the world including the United Kingdom and Australia, researchers are encouraged (and even required) to demonstrate authentic and meaningful engagement with those who will be directly affected by the research findings––sometimes called the ‘end users’ or consumers of the research. There are steps to ensure that this engagement is meaningful and has taken place from early in the conception of a project, and not simply a tokenistic add-on when all the decisions are already made. Indeed, Smits, van Meeteren, and Klem, et al. (2020) state that ‘research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made’.

PPI approaches foster a co-production of knowledge in which there is effective engagement and participation at all stages of research from conception and design of a project through to dissemination and translation. However, though PPI is an expectation and requirement in many settings, it is acknowledged that effective implementation can be difficult (Smits et al., 2020). Some health faculties at universities have set up specific groups made up of lay people that can provide lived experience feedback to researchers and the broader university. However, it can be especially challenging to establish authentic engagement and involvement with hard-to reach groups, even though persons in these communities are typically under-represented with limited histories of involvement.

It is in the dissemination stage of the work that journal editorial teams have a crucial role to play. We believe that steps taken by researchers to meaningfully include PPI must be carried through to the dissemination stage. This is a point at which special care is needed to ensure that the mantra of nothing about us without us is honoured. At JAN, when considering submissions about minoritized groups, we consider it crucial that a peer reviewer who is a member of that community is involved in the peer review process. This is important because mainstream reviewers, while providing essential and necessary feedback, may not fully grasp the nuance of the issues (including lived experience perspectives) for communities and individuals who belong to the group under scrutiny.

These specialist reviewers are most often appropriately qualified nurse scientists who belong to minoritized communities such as First Nations communities, migrant communities, those belonging to disability communities who have (seen or unseen) disabilities and LGBTQI + communities. In nursing we are fortunate to have access to many scientists and scholars from Black, First Nations and minority ethnic communities at all career stages, who are able to provide specialized and highly nuanced feedback and expert opinion.

In some situations, specialist feedback may also come from consumer advocates, disability advocates or members of patient and carer advocacy or special interest groups. Some minoritized and marginalized communities have much more capacity to provide this specialist feedback than others and this may be because they have a more established track record of providing feedback to health and scientific researchers and service providers. These include (but are not limited to) mental health advocates, disabilities advocates, dementia advocates, older person advocates and cancer care advocates. It is often the case that these specialist reviewers provide crucial and important feedback to authors and editors that may well be missed by mainstream reviewers, as they are able to bring a particular lived experience lens to the work.

Then there are other groups who may have less opportunity for inclusion and have been largely excluded from political, social and economic opportunities. It can be more difficult to build a bank of reviewers from some communities and so from time to time we need to issue a targeted call for reviewers. This promotes a cultural change and proactively seeks participation from those who may be (or have been) marginalized. Such practice allows meaningful and informed contributions to shaping the literature from hidden voices as feedback on work that is derived from personal lived experience can greatly enhance the work.

We recently issued a call for reviewers from trans and gender non-conforming communities and this call resulted in some mixed responses from our JAN community. While by far most who commented were positive, there were some commentators who seemed to feel that this call meant that the quality and rigour of work could somehow be jeopardized. This is not the case at all. All papers benefit from a panel of methods and content reviewers who are carefully chosen because of their expertise (including lived experience expertise where possible) to comment on a submitted paper. Each peer review panel is hand-picked for each submission to ensure reviewers have the appropriate expertise to make informed comment on the paper.

Authors submitting work focussing on marginalized or minoritized groups are generally comfortable in engaging with and taking feedback from members of the communities they work with. People from trans and gender nonconforming communities are affected by social marginalization. We believe it is important that papers submitted that aim to provide the information to help health services meet the needs of people from these communities have the benefit of feedback from people in these communities. This feedback is generally greatly appreciated by authors who often comment on how useful they find this specialist layer of critique and feedback.

The risk with not bothering to do this is that without meaningful PPI during the dissemination process is that published work can simply contribute to ongoing social disablement, marginalization and structural discrimination. Without taking meaningful steps to ensure otherwise, material that simply reinforces stereotypes and contributes to the ongoing oppression and invisibility of particular groups of people can and likely will continue to be (re)produced and disseminated through the literature.

Nurses are at the front line of health care and have a duty to provide inclusive health and care services that are equitable and respectful to all. So too our journals need to ensure that the knowledge and science on which our practices and services are based are inclusive for a range of perspectives and voices. It is important to remember that our published discourse both shape and reflect who we are as nurses and what nursing stands for - ‘nursing journals exert a powerful influence in constructing nursing knowledge and shaping nursing practice’ (Jackson et al., 1996). The ‘nothing about us without us’ imperative is an important element of the inclusion agenda to which this journal fully subscribes.