Shared Care Records Show Promise for Young Mental Health Patients, but Clinicians Remain Hesitant

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The systematic review by Neve Jones, Roe and Holland arrives at a moment when health systems across high-income countries are rethinking what a clinical record is for. Historically, the medical record has been treated as a professional artifact, written by clinicians for clinicians, with patients granted at best a retrospective viewing window. The idea examined in this review—that young people and their parents or carers might hold, edit and co-produce the document that describes their care—represents a meaningful departure from that tradition. It reframes documentation not as a static archive but as a living, shared workspace in which the perspectives of the young person, the family and the professional are all visible and negotiable.

One of the useful contributions of the review is its international scope. By drawing together studies from the Netherlands, the United States and Norway, the authors capture three quite different implementation philosophies. The Dutch systems described, such as EPR-Youth and Iuvenelis, sit within a national tradition of integrated youth records, where child health, education and social care information has long been coordinated across agencies. The Norwegian adolescent-accessible electronic health record portals reflect a Scandinavian policy emphasis on patient autonomy and digital infrastructure, with adolescents granted direct portal access to their records as a matter of entitlement. The American shared plans of care and patient portals, by contrast, emerged largely from patient-centered medical home models and pediatric chronic disease management, where the plan of care is deliberately written with the family rather than about them. That these three traditions converge on similar design principles—transparency, contribution, and communication—suggests that jointly held documentation answers a need that transcends any single health system’s organization.

The developmental framing that the authors emphasize deserves particular attention. In adult mental health care, shared documentation can be introduced on the assumption that the service user is the primary, and often sole, stakeholder in their record. Childhood and adolescence complicate this considerably. Decision-making capacity is not a fixed attribute but something that matures gradually, and legal frameworks such as those governing consent and confidentiality in the United Kingdom recognize graduated autonomy rather than a single age threshold. A jointly held document must therefore navigate a moving boundary: what a thirteen-year-old consents to share with parents may differ from what a sixteen-year-old chooses, and both may differ from what the parents themselves feel entitled to see. The review’s finding that young people and parents generally view these documents positively, while professionals remain ambivalent, may partly reflect this unresolved boundary work. Professionals worry, with some justification, about information that could distress a young person if read directly, about third-party information contributed by family members, and about the medico-legal status of text that multiple parties can edit.

The professional ambivalence identified in the review also connects to a broader literature on clinical documentation and defensive practice. Clinicians in adult services have historically expressed concerns that open records could inhibit their candor in writing, lead to sanitized notes, or generate additional workload. Yet studies in adult open-notes initiatives, such as those following the widespread adoption of patient portal access to clinical notes in the United States, have largely found these fears to be overstated in practice, with most clinicians reporting minimal changes to their writing habits and patients reporting benefits in recall, understanding and trust. Whether that experience transfers to child and adolescent mental health is precisely the kind of question the review’s evidence base is too thin to answer definitively, and the authors are appropriately cautious on this point. The seven included studies used a range of methodologies—qualitative interviews, surveys, and evaluations of acceptability and engagement—rather than controlled trials of clinical outcomes, which means the field currently knows more about what people think of jointly held documents than about what those documents actually change.

This gap between acceptability and effectiveness is a recurring feature of digital health innovation in mental health. Interventions that improve satisfaction and perceived transparency do not automatically improve symptoms, engagement or outcomes, and the mechanisms linking them remain poorly specified. A plausible causal chain runs from transparency through trust to engagement to better adherence and outcomes, but each link requires empirical testing. The review’s narrative synthesis, rather than meta-analysis, reflects the heterogeneity of the available studies, and this is a reasonable methodological choice given that the interventions themselves differ substantially in structure, access permissions and the degree of genuine co-creation involved. A portal that merely allows a young person to read their clinician’s notes is a different intervention from one that requires the care plan to be drafted jointly in session, and the review is careful to encompass both under its umbrella term.

The multi-agency dimension highlighted in the background section is particularly relevant to the United Kingdom context, where young people’s care often spans health, education and social care. A young person with emotional difficulties may simultaneously be known to CAMHS, a school counselor, a social worker and their general practitioner, each holding separate records that may contradict one another. Fragmentation of this kind is repeatedly cited in policy reviews as a source of distress for families, who must repeat their story to each new professional and reconcile conflicting advice. A jointly held document, in principle, offers a single narrative that travels with the young person, reducing duplication and giving the young person some authorship over how their story is told. The review’s observation that transitions—between clinicians, teams, and from child to adult services—are common vulnerability points in CAMHS gives this function added weight, since continuity of information at transition is a well-documented weakness of current systems.

The methodological rigor of the review itself merits comment. The authors searched thirteen databases alongside grey literature sources, including think tank and policy organization repositories, which is appropriate for a field where implementation learning often appears in reports rather than journals. The use of an adapted Hawker critical appraisal tool, chosen specifically because it accommodates non-traditional study designs and qualitative work, is a sensible fit for a literature dominated by small qualitative and mixed-methods studies. The dual independent screening, extraction and appraisal, with third-reviewer arbitration for disagreements, follows established good practice, and the prospective registration with PROSPERO in February 2025 provides transparency about the review’s intended scope. The screening funnel—from 2,715 initial results down to seven included studies—is steep but not unusual for a narrowly defined intervention in a specialized population, and the authors note that no studies were excluded at full text after initially appearing eligible, which suggests the inclusion criteria were applied consistently.

The finding that barriers concentrate among professionals rather than families has practical implications for implementation. If young people and parents are ready and willing to engage with shared documents, then the limiting factor is professional training, workflow design and organizational culture. This mirrors experience from adult shared decision-making initiatives, where the evidence consistently identifies clinician attitudes, time pressures and uncertainty about medico-legal boundaries as the principal obstacles, rather than patient reluctance. For CAMHS, this suggests that implementation efforts should focus on clinician education, clear governance guidance about what can and cannot be shared, and electronic record systems designed so that co-creation is easy rather than burdensome. The practicalities of co-creation mentioned in the review—how and when a document is drafted jointly, who mediates disagreements between a young person’s and a parent’s preferences, and how the document is updated over time—are precisely the operational questions that future implementation research should address.

The review also sits within a wider policy trajectory. The NHS Long Term Plan and the Topol Review, both cited by the authors, have positioned digital access to records as a core expectation of modern health care, and patient portal access is now standard across much of the National Health Service for adults. Extending meaningful access and co-creation rights to young people is a logical next step, but the review makes clear that it cannot simply be a matter of switching on existing adult infrastructure. Developmental considerations, parental involvement, safeguarding responsibilities and the multi-agency character of child health care all demand youth-specific design. The authors’ identification of this as the first systematic review in the area means that their map of the existing evidence, sparse as it is, will likely serve as the reference point against which future studies position themselves.

For researchers, the review implicitly sets an agenda. The field needs controlled or at least longitudinal evaluations of clinical and service outcomes, studies that disaggregate effects by age and developmental stage, investigations of how confidentiality and information governance frameworks interact with shared documents, and implementation studies that document what happens when jointly held documentation is introduced into real CAMHS teams. For clinicians and service leaders, the immediate message is more modest but actionable: young people and families are receptive, the international experience suggests feasibility, and the obstacles are organizational rather than attitudinal on the service user side. As digital record systems continue to evolve, the question is less whether young people will eventually hold their care documents jointly with professionals, and more how quickly the evidence base can mature enough to guide that transition safely and well.

Subject of Research: Jointly held care documents in child and adolescent mental health services

Article Title: Jointly held care documents in child and adolescent mental health services: a systematic review

Article References: Jones, N., Roe, J., & Holland, J. (2026). Jointly held care documents in child and adolescent mental health services: a systematic review. Frontiers in Child and Adolescent Psychiatry, 5, Article 1863944. https://doi.org/10.3389/frcha.2026.1863944

Image Credits: AI Generated

DOI: 10.3389/frcha.2026.1863944

Keywords: CAMHS, jointly held care documents, systematic review, shared decision-making, patient portals, electronic health records, adolescent mental health, digital health, care planning, youth mental health, Jointly, held