Notes about me, without me: Research about me, without me

Abstract

Background

In mental health services, documentation is dominated by providers who write clinical notes without the input of the individuals accessing the services. Although these notes are essential, they often exclude the voices and perspectives of those accessing services. We suggest that this one-sided approach can lead to feelings of alienation, loss of agency, and misrepresentation.

Main body

Our commentary explores co-writing, an approach to documentation where both the provider and the person accessing services jointly contribute to the notes. Co-writing can include various formats, from typed notes to drawings or dictated content, reflecting a more inclusive process. We present co-writing not just as a practical innovation but as an ethical shift aligned with ethics of care and concepts of care. We propose that by inviting individuals to co-author their narratives, co-writing offers opportunities to challenge traditional power imbalances in mental health services and improve the accuracy, emotional relevance, and inclusivity of documentation. We also suggest and examine the limitations and challenges of implementing co-writing, such as provider resistance, time constraints, and ethical considerations around consent and confidentiality. Strategies such as professional training, mentorship, and clear guidelines are suggested to support sustainable implementation. Although co-writing is promoted as a collaborative documentation practice, our analysis reveals that the research underpinning it rarely involves people with lived experience leading or co-creating the research. We present a commentary that critically points out that gap and calls for the co-writing of the evidence base itself to inform practice.

Conclusion

We suggest that co-writing clinical notes has the potential to transform mental health documentation from a provider-dominated task into a collaborative, empowering process. It offers a more ethical and accurate representation of individuals’ experiences. We call for further research led by people with lived experience, and for the development of policies, training, and infrastructure that support the ethical integration of co-writing into mental health services.

Plain language summary

In mental health services, notes are usually written by providers without involving the person accessing the service. Although these notes are important, we suggest that this one-sided approach can leave people feeling misunderstood, disempowered, or invisible, and these are feelings that can negatively affect engagement in services. This commentary explores an alternative approach called co-writing, where providers and individuals work together to write one shared set of notes. This might involve typing, talking, drawing, or other creative ways of documenting experiences. Co-writing makes the process more inclusive, giving people a chance to tell their own story and be heard. We suggest that by enabling shared authorship, co-writing can help people feel more in control when accessing services. Although co-writing is promoted as a collaborative documentation practice, we reveal that the research underpinning it rarely involves people with lived experience leading or co-creating the research. We critically examine that gap and call for the co-writing of the evidence base itself to inform practice. We also look at challenges, like time pressures or concerns from providers, and suggest ways to make co-writing more practical in mental health services, such as training staff, using clear guidelines, and creating supportive environments. In conclusion, we suggest that co-writing has the potential to make documentation more empowering, accurate, and ethical, ultimately improving the quality of people’s experiences within mental health services. However, more research, especially by people with lived experience, is needed to help guide its wider use.

Introduction

In mental health services, documentation has traditionally been a one-sided process in which providers, such as therapists, nurses, psychiatrists, psychologists, social workers, and school-based providers, write clinical notes about individuals accessing services. These clinical notes serve various purposes, which include fulfilling legal and ethical duties, and providing a memory aid and a means to track progress [1, 2]. We suggest that this practice of writing notes, while essential to the functioning of mental health services, can inadvertently contribute to disempowerment, misrepresentation, and lack of agency for those accessing services. This is because these clinical notes are written with little to no input or collaboration from the individuals concerned.

Voices from the lived experience community have shared personal experiences related to the flaws of traditional clinical notetaking. For example, Mary O’Hagan [3], mental health advocate and former Mental Health Commissioner in New Zealand, writes in her memoir Madness Made Me about the profound feeling of alienation when reading her clinical notes:

I leafed through the photocopies feeling more and more alienated. The files were all about me but I couldn’t see me in them. Worse still, there was no process that gave me a right of reply or allowed me to add my version to them [3, p. 181]

This resonates deeply with individuals accessing mental health services, where their stories are distilled into brief, clinical observations by providers, often devoid of nuance, context, or personal voice. As someone (Snita) who has navigated the mental health system, I have felt similar. On reading my clinical notes, I found they misrepresented the struggle I was going through or, worse, completely omitted crucial aspects of my journey. Research also points out that clinical documentation can involve interpretive shifts, where clinical opinions and judgements can be reframed as medical facts using deficit-oriented language [4].

A potential solution to this disempowerment, we suggest, is the concept of co-writing notes, which represents an ethical shift towards a more inclusive and collaborative system. However, despite the inclusive ethos of co-writing, our analysis reveals a striking disconnect between the practice and the research that supports it. Although co-writing is promoted as a collaborative documentation practice in mental health services, the research underpinning it rarely involves people with lived experience leading or co-creating the research. The title of our commentary, ‘Notes about me, without me: Research about me, without me’, highlights our central concern: that co-writing research rarely includes the voices of people with lived experience in the process, and we emphasise that research should be conducted with rather than about those with lived experience expertise.

‘Co-writing’, also called codocumentation, collaborative documentation, or concurrent documentation, is an approach in which the provider and person accessing services jointly write mental health notes [1, 5–7]. We have chosen the term ‘co-writing’ as it represents to us the ethos of actual shared authorship. Co-writing can be situated within a wider movement of person-centred planning and separate patient-held care records, which are notes held alongside clinical notes (for example [8, 9]). However, for us, co-writing extends these practices by explicitly foregrounding collaborative authorship throughout all documentation and by creating only one set of notes. ‘Notes’ is used here in an inclusive way to include what are referred to as case notes, progress notes, intake documents, assessments, progress reports, treatment plans, and similar. Also, ‘notes’ can be produced by verbal expression and dictation, writing directly on paper, typing on a computer, drawing, writing letters, and similar.

As someone (Snita) who has been involved in mental health services, I know how isolating it feels when your experiences are distilled into a diagnosis or clinical shorthand. Co-writing offers a powerful shift. If I had been invited to contribute to my session notes, I could have elaborated, which would have given the provider a clearer understanding of what I was experiencing. We propose that co-writing is not just about putting words on paper; it is about restoring agency and fostering a sense of ownership in one’s mental health journey. This relational approach to writing notes fosters an ethical shift toward greater inclusivity, respect for autonomy, and empowerment, aligning with ethics of care and concepts of care.

However, at present, the research into co-writing remains limited. In particular, there is a notable lack of research that is led by or co-created with those with lived experience expertise. Our aim in this commentary is to point out this gap and to advocate not only for co-writing as an ethical shift in documentation practices but also for the inclusion of lived experience experts in future research, policy development, and service design in this area. This need sits within a broader movement toward the meaningful co-creation of mental health research, policy, and services with people with lived experience expertise, a shift shown to support recruitment for research, make research more relevant, increase engagement with services, and improve quality of life (as stated in, for example [10–12]).

In this commentary we do not provide a systematic review of the literature; instead, we explore co-writing as an ethical transformation, grounded in the ethics of care and concepts of care. We will first suggest ethics of care and concepts of care, as relevant ethical grounding for co-writing notes. We will then suggest and explore some benefits of co-writing, as well as limitations of this approach. Finally, we will make a call to action for further research and policy to support and guide co-writing practices and ensure the voices of those accessing services are heard. Although we primarily draw on literature and experiences from general mental health services, the ethical and relational principles of co-writing may also be relevant to other areas, such as addiction services. Further research is needed to explore how co-writing might be adapted in those contexts, particularly in ways that are sensitive to the unique challenges and forms of stigma encountered in, for example, addiction services. By drawing on the literature and lived experience expertise (Snita), we aim in this critical commentary to stimulate discussion and action.

Ethics of care and concepts of care

The work of Carol Gilligan [13] and Nel Noddings [14], foundational thinkers in ethics of care, highlights the significance of emotions, and sensitivity to personal context, when making ethical decisions. This approach moves away from abstract ethical principles or universal moral rules, advocating instead for an approach that prioritises the needs of individuals in their specific relational and social contexts. We consider ethics of care to challenge traditional, hierarchical models of care that place provider expertise over the lived experiences and autonomy of individuals accessing services. The ethics of care approach encourages seeing care as a relational process in which the provider and the person accessing services are active participants. By suggesting the integration of ethics of care, we aim to challenge the dominant, one-sided approach to clinical notes and advocate for a more inclusive co-writing process in which both the provider and individual accessing the service collaborate on documentation.

Beyond Western thinking, there are also rich, Indigenous perspectives on care that resonate with ethics of care. For example, Māori concepts from Aotearoa New Zealand offer complementary insights. Before moving into explaining these concepts, I (Snita) want to acknowledge that my understanding has been shaped through discussions with Kaumātua (elders in Māori society) and insights from texts [15, 16]. My understanding emerges from an interwoven engagement that is relational and inseparable, which reflects the integrated nature of Māori knowledge systems, where learning arises through verbal connection rather than discrete citation. It is important to note that my learning of these concepts has been in English rather than te reo Māori, meaning the full depth and richness of their meaning may not be fully captured through translation.

Two concepts that offer complementary insight are whanaungatanga and manaakitanga. These concepts emphasise interconnectedness and the reciprocal responsibilities we have to one another. Whanaungatanga focuses on kinship and community, underscoring the importance of maintaining and nurturing relationships that go beyond the individual. It speaks to a vision of care that is not just about addressing individual needs but recognising the broader, interwoven social networks in which people live. Manaakitanga refers to the active process of caring for others with kindness, respect, and generosity, highlighting that care is not merely a task but a relational act of uplifting and supporting others.

We suggest that these Indigenous concepts align with the ethics of care by emphasising the relational and contextual aspects of care, in which the welfare of individuals is tied to the welfare of their communities. Both the ethics of care and Māori concepts, such as whanaungatanga and manaakitanga, share an understanding that ethical practice arises through relationships rather than rules. Each framework values attentiveness, reciprocity, and responsibility as essential elements of care. Where Gilligan [13] and Noddings [14] speak to empathy and responsiveness to the needs of others, whanaungatanga and manaakitanga extend this by situating care within collective welfare and mutual obligation. Together, while they have points of difference, they highlight that care is not an individual act but a shared ethical commitment to sustaining relationships and community balance.

When thought about in the context of mental health services, we suggest that co-writing can align with these values of connection and shared responsibility. By directly involving people in all their notes, we suggest that co-writing fosters meaningful collaboration, mutual recognition, and distributes responsibility rather than placing it solely on clinicians. In this way, ethics of care and concepts of care, like whanaungatanga and manaakitanga, are not just abstract ideals. Instead, they provide a tangible ethical framework that supports the relational nature of co-writing. In the next section, we explore how this ethical shift plays out in practice: fostering empowerment, challenging power imbalances, and improving the quality and inclusivity of documentation.

Empowerment, shifting power dynamics, and ensuring accuracy through co-writing

We suggest that co-writing offers a significant ethical benefit by shifting mental health documentation from a provider-only process to a collaborative one. The traditional model, where clinical notes are written solely by providers without input from those accessing services, often privileges the provider’s voice and risks marginalising the perspectives of those accessing services [2, 7]. We propose that co-writing may address these concerns by empowering individuals to be directly involved in the documentation process to ensure their experiences, thoughts, and emotions are reflected with greater accuracy and respect. This collaborative approach, we suggest, fosters empowerment, giving people agency in shaping their involvement and narrative.

We propose that co-writing could also help address systemic inequities in mental health services. When individuals elaborate on symptoms, decisions, and behaviours, their lived experiences are more authentically represented. This is particularly important when experiences fall outside dominant diagnostic frameworks or cultural norms. For example, individuals from minority groups may encounter challenges rooted in misunderstanding or bias. It has been suggested that co-writing can expose institutional racism, and class and gender inequalities, and it can ensure marginalised and underrepresented groups are heard [7, 17].

The relationship between provider and person accessing services has traditionally been asymmetrical, with the provider holding authority over treatment decisions, progress assessments, and clinical notes. We suggest that this power imbalance may lead to feelings of helplessness or marginalisation for those accessing services, particularly those who have historically been oppressed or misrepresented in mental health services. We propose that co-writing may represent an ethical and practical shift towards more egalitarian relationships by offering those accessing services a more active role in shaping their role and notes [5, 7, 18].

We suggest that co-writing may also challenge the traditional model of therapy as a one-way communication channel, in which the provider alone interprets and records the individual’s story. That is, co-writing shifts documentation from a unilateral act of interpretation to a shared process of meaning-making. This collaborative process can lead to the person accessing service taking a more active stance in the therapeutic process [5, 18, 19]. Through co-writing, there is the opportunity for open dialogue about progress, setbacks, and concerns, which strengthens the therapeutic alliance and ensures the individual’s perspective is valued equally to that of the provider [7, 20].

Another benefit we propose of co-writing is the improvement in the accuracy and quality of documentation. Traditional provider-only note-taking practices, in which providers document after a session, rely on recall for details, which may impact the accuracy of documentation [21]. Co-writing notes ensures the experiences of people accessing services are represented, which assists with the accuracy of details and reduces misunderstandings [2, 7, 18, 22]. This collaborative documentation can help prevent harmful misinterpretations, and provide a more complete record, which is particularly important for both ethical and legal or health-related concerns.

I (Snita) remember the frustration of feeling unseen in the mental health system. Providers sometimes used words that felt detached, clinical, and even judgemental. With co-writing, individuals accessing services have the chance to include their own voices and offer context. This kind of collaboration reclaims the autonomy that is so often stripped away in traditional, one-sided documentation practices. In this way, co-writing aligns with ethics of care and concepts of care by fostering mutual respect, emotional engagement, and shared responsibility in the documentation process.

Peer providers have also said that a more collaborative writing approach is empowering because it encourages the use of more thoughtful person-centred language.1 This was reflected in practice in a peer-support service, where the service developed a ‘peer support’ approach to note-taking, in which notes were written non-clinically, in a hopeful and non-judgemental way, and discussed with the person concerned [23].

Having considered these benefits, it is also important to recognise that co-writing is not without its challenges. Practical and ethical considerations require attention to ensure it is used effectively, ethically, and sustainably in mental health services. In particular, we fully recognise that traditional provider-only notes have organisational and clinical functions. These include documentation to meet legal and professional obligations, efficient communication among providers, and a protected space for clinicians to formulate and revise hypotheses. Our intention is not to suggest replacing these functions, but rather to open a dialogue on how they might be thoughtfully adapted within co-writing practices.

Resistance from providers

First, in our view, there could be resistance from providers. The resistance may stem from several concerns, including worries about time constraints, fear of disrupting the flow of the session, or apprehension about controversial material. For instance, it is noted that providers might write in vague ways, so this could lead to leaving out important details, in an attempt to avoid controversial material or risk causing emotional reactions from those accessing services [22, 24, 25]. This could reduce the transparency that co-writing is meant to promote. Some providers may also feel uncomfortable with the idea of involving people accessing services in the notetaking process, believing it will lead to unprofessional notes [26].

We suggest that, although it is acknowledged that providers may resist co-writing due to concerns about professional authority and time constraints, these barriers can be mitigated through targeted strategies, system changes, and education. One approach we suggest is comprehensive training for mental health professionals on the relational ethical benefits of co-writing. When providers understand that co-writing enhances relationships, they may be more willing to adopt the practice. Additionally, training can focus on maintaining professional judgement while engaging in collaborative documentation, which will help address concerns about compromising what providers write. To further alleviate these concerns, clear, standardised guidelines for co-writing can be developed, which outline specific roles and boundaries for both the provider and the individual in the documentation process. Importantly, we recommend that the development of such guidelines should not be driven solely by clinical perspectives but should also draw on experiential learning from those with lived experience and from peer support practitioners. Collaborating with local peer support agencies and lived experience experts can help ensure that the guidelines reflect relational, inclusive, and empowering principles and remain grounded in the realities of lived experience. For example, the grounding of peer support is empowerment, choice, and mutuality, which could promote the person not being considered a ‘subject’ but someone who is fully involved in the process of recording their journey of recovery [23]. These guidelines will help ensure the collaborative effort remains within a professional framework, thus maintaining the integrity of the record. Peer mentorship could also be an effective tool in reducing resistance, with providers who have successfully implemented co-writing sharing their experiences and providing guidance to colleagues. Finally, while time constraints within sessions are noted as a concern [26], it is suggested that co-writing can reduce the time spent on documentation outside of sessions [2, 7, 27]. This indicates that consideration should be given to the potential benefits of extending session durations.

Confidentiality and privacy

We suggest that co-writing introduces ethical considerations regarding confidentiality and privacy. Although transparency and openness are key benefits of co-writing, they also present considerations in protecting sensitive information. In our view, as both the provider and the individual contribute to the notes, it is important to establish clear ethical guidelines to maintain privacy, which, in turn, can enhance trust and foster collaboration.

First, we suggest that the ethical responsibility to uphold confidentiality remains paramount, even in a collaborative note-taking process. Providers must ensure sensitive information is handled securely, both during the co-writing process and afterwards. This includes considering how electronic health record systems are adapted to ensure both parties’ contributions are protected and accessible only to those with appropriate permissions.

Additionally, we propose that there are consent considerations. In co-writing, both parties must consent not only to sharing information but also to how that information is recorded and used. This process requires explicit, informed consent from individuals accessing services, ensuring they are fully aware of how their contributions may affect their current and future interactions with other healthcare professionals. Therefore, ensuring both parties are fully informed and consent to the co-writing process is crucial for maintaining ethical standards of care.

The boundaries of co-writing

Although co-writing offers many benefits, we suggest that it is important to recognise it may not be appropriate for all individuals or situations. For example, in situations of acute mental health crises and during moments of active or heightened distress, co-writing may not be suitable [1, 7, 21].2 However, it is important to recognise that some recovery-oriented models, such as the Tidal Model [28], lend themselves to practices of co-writing some notes even during acute crises. Additionally, specific populations, such as very young children or those with limited communication abilities, might find co-writing challenging. However, they should not be excluded. Instead, in these cases, we suggest that the inclusion of family members or guardians in the co-writing process and using alternative documentation methods like art or digital media might be more appropriate. Lastly, it is important to recognise that there will be some people who access services who will not appreciate co-writing for their own reasons [2, 7]. In these situations, we suggest that it is important that co-writing is fully understood by the person, and the decision not to co-write is respected.

Lived experience-led or co-created co-writing research

We suggest that co-writing is a promising and inclusive practice in mental health services. Yet, the literature reveals that most of the research supporting co-writing has been conceptualised, designed, and written without the involvement of people with lived experience. Instead, people with lived experience are included as research participants or examples of case studies, rather than as co-researchers or co-authors.

To the best of our knowledge, only one paper has someone with lived experience being explicitly part of the research process. This is a paper written by Albeck and Goldman [5]. The second author, Goldman, is a person with lived experience and contributes to the paper, outlining their perspective on collaborating with Albeck, a provider, to create clinical notes. Excerpts from notes authored by Goldman as part of the co-writing process are included in the paper. This example highlights what is possible when lived experience is centred not just in practice, but in the creation of the evidence base itself.

If co-writing is to fulfil its inclusive and transformative promise, then we must not only co-write the notes, but we must also co-write the evidence base that informs the practice. We are not alone in advocating for research that is led by and co-created with people with lived experience (for example, [21]).

However, it is also worth noting that some works in the co-writing literature may involve researchers, authors, and contributors with lived experience, even if this is not made very explicit in the publication. For example, the work of Scott and Doughty [23], which focuses on peer support service providers, likely reflects such involvement, although this is not very explicitly stated in depth.3

This absence of lived experience positionality reflects a broader pattern in the literature and points to an opportunity for journals to more consistently embrace and articulate reflexive practices.

The importance of reflexivity

Reflexivity is a critical component of rigorous research. It emphasises self-awareness, critical reflection, and ethical responsibility throughout the research process. As Olmos-Vega and colleagues [29, p. 242] describe, reflexivity involves “…a set of continuous, collaborative, and multifaceted practices through which researchers self-consciously critique, appraise, and evaluate how their subjectivity and context influence the research processes.”

Reflexivity is grounded in the recognition that subjectivity is valuable [29–31]. Rather than viewing subjectivity as a threat to validity, these authors suggest that acknowledging it strengthens transparency.

In qualitative research, researchers are encouraged to make their positionality visible at the different stages of the research process [29, 30]. For example, in the methods section of a manuscript, decisions such as sample selection should not only be justified in terms of research aims but also contextualised in terms of the researcher’s background, assumptions, and relationships to the subject matter [30].

Reflexivity is also gaining recognition in quantitative research. It is suggested that incorporating reflexivity in quantitative studies helps address unconscious biases that may affect participant responses and supports transparency around how researchers’ positions and assumptions influence data collection and analysis [31].

It is suggested that subjectivity cannot, and should not, be removed from research [29–31]. Instead, it should be acknowledged and integrated into the research process as a strength. Reflexivity, therefore, underscores the importance of journals of explicitly acknowledging the contributions of researchers and authors with lived experience in manuscripts.

In line with this, we acknowledge that alongside Snita’s lived experience expertise, our perspectives in this commentary are shaped by our wider positionalities, including our disciplinary and academic backgrounds (lived experience-led research and education, philosophy, social work, therapy, and medicine), our roles within mental health institutions, and our cultural location in Aotearoa New Zealand. These positionalities inform the questions we ask, the literature we draw on, and how we interpret co-writing practices. We articulate these influences not as biases to be eliminated, but as contextual standpoints that shape our engagement with this topic.

Conclusion: a call for action

We suggest that there are benefits to co-writing notes in mental health services. However, further research is needed to evaluate, for example, how co-writing impacts outcomes and, importantly, the satisfaction of those accessing services. The current research is limited. In particular, research that is led or co-created with those with lived experience expertise is inadequate. If research focused on those who access services, it could uncover, for example, how they perceive their involvement in co-writing, how it influences their sense of agency, and how it shapes their relationship with providers. Understanding these perspectives would offer valuable insights into the personal and emotional dimensions of co-writing, contributing to a wider understanding of its impact.

Furthermore, we suggest that effective integration of co-writing into mental health services will require clear policies, appropriate infrastructure, and wide training. This would include creating policies that explicitly define the roles and responsibilities of both providers and individuals accessing services in the co-writing process. We suggest that these policies should also address important ethical issues such as consent, confidentiality, and the handling of disagreements over content. Co-writing notes represents a transformative shift in mental health services that holds significant ethical and practical potential. By involving those who access services, not only in the documentation process itself, but also in the creation of policy surrounding it, we empower them to reclaim their narratives, challenge power dynamics, and engage more actively in recovery.

We call on the likes of lived experience researchers and experts, mental health service developers, policymakers, and educators to prioritise research, policy development, and training that will support the wider implementation of co-writing.

Author contributions

SA-K (patient involvement) developed the idea, project managed, and was the major contributor to writing the manuscript. HW searched and analysed the co-writing literature in preparation for the manuscript. HW contributed to writing the introduction, ‘Lived experience-led or co-created co-writing research’ section, and conclusion. SA-K wrote the response to peer review comments and made the revisions. HW searched for the majority of the material for the revisions. Both authors read and approved the final response to peer review comments and manuscript.

Funding

HW was funded by the World of Difference | He Ao Whakatoihara kore Research Student Stipend Award for this project.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.