The policy landscape the authors describe has transformed rapidly. In 2016, Australia’s National Health and Medical Research Council issued its Statement on Consumer and Community Involvement in Health and Medical Research, formally endorsing the participation of patients and community members in shaping research. Seven years later, the World Health Organization published its Framework on the Meaningful Engagement of People with Lived Experience, extending that logic to a global stage. Taken together, these documents represent an exponential growth in recognition that people who have lived through illness possess knowledge that clinical training alone cannot provide. Yet, as Sansom-Daly and Schilstra point out, even funding bodies can unwittingly entrench the divide, with grant guidelines requiring applicants to apply as either a researcher or a lived experience expert—but never both. The authors describe the resulting predicament in almost existential terms: for researchers whose lived experience is simultaneously a layer in their track record of expertise and a deeply personal endeavour, there is simply no guidance on whether, or how, to weave their survivor identities into their research contributions.

The two authors arrived at this in-between territory by strikingly different routes. Sansom-Daly was diagnosed with an ependymoma, a type of brain tumour, at age 21. Just weeks after finishing cranial radiotherapy, she began her psychology Honours year. During a laboratory lunch, she shared her story—a moment she recalls as both cathartic and uncomfortable. Her professor’s response, however well-intentioned, made her shrink inward: he called her a hero, an inspiration. She remembers wondering whether her diagnosis was bad enough to warrant such admiration, noting she had not even received chemotherapy. Across her research career, she describes feeling like a survivor-by-stealth. Asked repeatedly how she came to study adolescent and young adult cancer, she would pause, deciding how far back to peel the onion. For years she offered a part-truth, attributing her career direction to her experience as a research assistant on projects concerning onco-fertility and young people’s healthcare experiences, keeping her own patient history out of the account.

Her comfort with disclosure evolved only gradually. As a student, she feared that colleagues would misread her focus on young cancer patients’ psychological needs as a personal agenda rather than a scientific one. Looking back with what she calls 2025 eyes, she can see how her story might have added power to her projects—but she is candid about the confounds. She has since completed a PhD and clinical training, published extensively, and been promoted to Associate Professor, and she acknowledges she cannot be certain how much of her recent ease in sharing stems from the privilege and protection of academic status, and how much reflects a genuine cultural shift toward respecting lived experience in 2025. A telling moment arrived recently after a research workshop, when a young adult approached her and asked whether it was true that she was a survivor. She paused, and something clicked into place. Yes, she said, it was.

Schilstra’s trajectory could hardly have been more different. Born in the United States, she was diagnosed with acute lymphoblastic leukaemia at two and a half years old and relapsed at thirteen. Treatment as a teenager shaped much of her career path. Afterward, she became a patient ambassador for the paediatric oncology department where she was treated, supporting its fundraising efforts, and discovered that sharing her story in written and spoken form exponentially increased her confidence in disclosure—she saw firsthand how her experience could produce positive outcomes for the hospital and the patients she cared about. She initially believed becoming a physician was the only way to help other young people with cancer, but treatment-related cognitive effects, including slowed processing speed and memory difficulties, caused her to fail most of her first-year mathematics and science classes. Her academic advisor told her she had little chance of passing the pre-medicine program, so she switched to psychology and found a new mentor: a clinical psychology professor specialising in childhood chronic illness who guided her through a thesis on social support and quality of life in adolescents with chronic illness, and who explicitly encouraged her to leverage her lived experiences in her research.

That mentorship changed the course of her career. In 2017, after moving to Sydney, she joined Professor Claire Wakefield’s team, where her lived experience was welcomed in her job application and actively sought as a source of insight in her research assistant role. Her PhD supervisor, Dr Joanna Fardell, and her co-supervisor, Sansom-Daly, helped her build a meaningful program of work on that foundation. She has since been invited to serve as a lived experience advisor on multiple national and international research projects, steadily building her capacity as a survivor-scientist. Where Sansom-Daly’s early experiences taught her that disclosure carried professional risk, Schilstra’s taught her the opposite: that lived experience, when actively valued by mentors, could be a gateway to research engagement and leadership rather than a liability to be concealed.

The contrast between these two narratives is not merely anecdotal. The authors situate their reflections within an established psycho-oncology literature showing that adolescent and young adult cancer survivors routinely struggle to decide if and how to disclose their survivor identities to peers, colleagues, romantic partners, and new acquaintances. Despite rising survival rates, young survivors continue to face stigma, social anxiety, negative reactions, and uncomfortable responses like the hero framing Sansom-Daly encountered. What the commentary adds is the observation that these identity negotiations are intensified within academic and healthcare settings, where questions of motivation and bias layer new complexity onto the imposter syndrome already common among early-career researchers. Would the influence of lived experience on one’s research be seen as too strong? Might it overshadow professional expertise, introduce perceived bias, and detract from scientific credibility? Without policy guidance, the authors found, the extent to which each of them disclosed was shaped less by principle than by the specific people and opportunities they happened to encounter along the way.

An intriguing generational thread runs through their analysis. With nearly a decade between them in age, the two authors bracketed a major shift in how the research community treats experiential knowledge. Sansom-Daly’s career began before most of that shift, in an era when lived experience seemed relevant only to advocacy and fundraising—she recalls observing a passionate, outspoken young survivor at a workshop and noting the visible discomfort and distancing of the researchers in the room. The lesson she drew was that identifying as a survivor in professional settings would reduce perceived credibility, and that it was safer, and more professionally advantageous, to simply identify as a researcher. Schilstra’s career, by contrast, developed largely alongside the shift, as policies and funders began calling for lived experience engagement in the design, conduct, and even leadership of research. Her advocacy experience translated directly into research opportunities, allowing her to be respected as both survivor and scientist simultaneously.

The authors see a model for change in a neighbouring field. Mental health researchers have begun generating evidence on the value of lived experience research leadership, in which complementary research and experiential expertise are equally valued. That scholarship has prompted difficult self-reflection about the fact that mental health researchers frequently lead projects about lived experience without having any direct experience themselves, and it frames lived experience leadership as a way of rebalancing epistemic disparities stemming from historical failures to fully and equitably include those with lived experience. Cancer research, the authors argue, would benefit from a similar reckoning. But one key ingredient is missing: training and guidance. They call for practical instruction in how to train individuals with lived experience to effectively, ethically, and safely leverage their experience alongside their research expertise—a need they emphasise is especially acute for early-career survivor-scientists who lack the protective shield of a PhD or professorial title.

Beyond culture change, the authors point to methodological tools already available. Embodied research methods, which involve intersectional reflexivity and explicitly acknowledge how social identities shape research interactions, have been shown to enhance research quality and inclusivity, enabling a holistic understanding of complex health phenomena for marginalised and minoritised patients. The deeper demand, however, is conceptual: policy documents and funding structures must move from a binary of researcher versus lived experience expert toward a continuum of expertise, recognising the varied ways that survivors, researchers, and dual survivor-scientists can contribute along that spectrum. The authors’ message is ultimately one of reframing. Lived experience of cancer, they argue, should never undermine the credibility of an academic cancer researcher. With better guidance and genuine cultural change, the secret can become the superpower—enriching the inclusivity, relevance, and quality of cancer research for the next generation of patients and the scientists who once were among them.

Subject of Research: Dual identity navigation among cancer survivor-scientists and the integration of lived experience expertise into cancer research

Article Title: Secret or superpower? A narrative reflection on navigating dual identities as cancer survivors and cancer scientists

Article References: Sansom-Daly, U. M., & Schilstra, C. E. (2026). Secret or superpower? A narrative reflection on navigating dual identities as cancer survivors and cancer scientists. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02110-5

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02110-5

Keywords: cancer survivors, lived experience, psycho-oncology, survivor-scientists, identity disclosure, adolescent and young adult cancer, research policy, mentorship, epistemic expertise, imposter syndrome, research culture, Journal of Cancer Survivorship

The core premise is straightforward: science produces knowledge, but the way that knowledge circulates is governed by conventions that were established in an era of print journals, small laboratories, and slow communication. Those conventions persist even though the underlying infrastructure has been transformed. Preprint servers, open-access repositories, collaborative platforms, and data-sharing mandates have removed many of the technical barriers to rapid, transparent dissemination. Yet, as the commentary emphasizes, the cultural expectations surrounding credit, career advancement, and publication have not kept pace. Researchers still face powerful incentives to hoard data, to slice findings into the least publishable units, and to prioritize novelty over rigor, because those behaviors are what traditional evaluation systems reward.

Knowledge sharing sits at the center of the argument. The authors contend that openness should not be framed as an additional burden placed on already stretched researchers, but as a redesign of the default workflow. When data, code, protocols, and negative results are shared as a matter of routine, the entire enterprise becomes more efficient and more trustworthy. Other teams can verify findings, reuse materials, and avoid duplicating failed experiments. Systematic reviews and meta-analyses become more complete because the file drawer problem, in which unflattering results disappear from the literature, is mitigated at the source. The commentary suggests that institutions can accelerate this shift by embedding sharing requirements into grant conditions, laboratory onboarding, and graduate training, so that open practices become habitual rather than heroic.

Training emerges as a recurring theme throughout the piece. Cultural change in research, the authors argue, cannot be imposed from the top down alone; it must be cultivated in the next generation of scientists. Doctoral programs and early-career mentoring shape the professional identities of researchers more powerfully than any policy document. If mentorship continues to signal that impact factors and first-author papers in prestigious venues are the only currency that matters, then open-science mandates will remain symbolic. Conversely, when senior researchers model transparent practices, discuss failures openly, and reward careful replication work, junior scientists receive a coherent message about what constitutes good science. The commentary calls for structured programs that teach not only technical skills but also the norms of collaborative, reproducible research.

Evaluation reform receives equally sustained attention. The piece situates its argument within the broader international movement, exemplified by initiatives such as the San Francisco Declaration on Research Assessment and the Leiden Manifesto, that seeks to move institutions away from crude journal-level metrics as proxies for individual quality. The authors argue that evaluation systems function as the immune system of research culture: they determine which behaviors are accepted and which are rejected. As long as hiring, promotion, and funding decisions hinge on publication counts and journal prestige, researchers will rationally optimize for those signals, even at the expense of rigor, openness, and collegiality. Alternative approaches, including narrative curricula vitae, portfolio-based assessment, and explicit weighting of contributions such as peer review, mentoring, data curation, and community service, are presented as practical mechanisms for broadening the definition of scientific merit.

The commentary is careful to acknowledge that evaluation reform is difficult precisely because metrics are convenient. Quantitative indicators allow committees to compare large numbers of candidates quickly and appear objective. Replacing them with qualitative judgment requires time, training, and trust in evaluators. The authors respond that the apparent objectivity of citation counts conceals well-documented distortions, including field differences, self-reinforcing citation networks, and susceptibility to gaming. A more honest system, they suggest, would combine structured qualitative assessment with responsible use of quantitative evidence, applied at the level of individual contributions rather than journal brands. Several funding agencies and universities have already begun experimenting with such frameworks, and the commentary argues that these experiments should be evaluated with the same empirical rigor that scientists demand in their own research.

Community engagement forms the third pillar of the proposed cultural transformation. The authors argue that research culture is not confined to the walls of academia; it extends to how scientists relate to the public, to practitioners, and to the communities affected by their work. Participatory research models, citizen science, and co-design approaches are highlighted as strategies that both improve the relevance of research and redistribute epistemic authority. When patients, teachers, policymakers, or community members help formulate research questions, the resulting studies are more likely to address genuine needs, and the findings are more likely to be trusted and used. Engagement, in this framing, is not a dissemination afterthought but a constitutive part of the scientific process that begins at the stage of question selection.

The piece also addresses the structural conditions that make cultural change possible. Individual researchers, however motivated, operate within systems shaped by institutions, funders, publishers, and learned societies. The commentary therefore advocates coordinated action across these actors: funders can align grant criteria with open practices; institutions can reform promotion guidelines; publishers can support transparent peer review and registered reports; and societies can convene communities to develop shared norms. The authors emphasize that partial, fragmented reforms risk producing cynicism, since researchers asked to adopt new practices without corresponding changes in evaluation will experience openness as a cost with no return. Alignment across the system is presented as the decisive factor separating genuine transformation from superficial compliance.

Importantly, the commentary treats research culture as an empirically tractable subject. Rather than exhortation alone, the authors call for studying cultural interventions themselves: measuring whether particular mentoring programs, assessment reforms, or engagement strategies actually change behavior, improve reproducibility, or increase public trust. This meta-scientific stance reflects the broader movement toward the science of science, in which the research enterprise becomes an object of systematic investigation. By applying the same standards of evidence to cultural interventions that are applied to laboratory experiments, the field can learn which strategies work, under what conditions, and for whom, and can avoid investing in well-intentioned initiatives that fail in practice.

The appearance of this argument in npj Science of Learning is itself significant, since the journal sits at the intersection of education, psychology, and neuroscience, fields that have confronted reproducibility challenges directly and that depend heavily on public trust to justify their societal value. The commentary’s message is ultimately one of cautious optimism: research culture is not an immutable inheritance but a set of practices that scientists themselves created and can therefore remake. By aligning knowledge sharing, evaluation, and community engagement, the authors contend, the research enterprise can become more rigorous, more equitable, and more responsive to the societies that sustain it, provided that institutions, funders, and individual researchers act together rather than waiting for others to move first.

Subject of Research: Strategies for fostering cultural change in the research enterprise through knowledge sharing, research evaluation reform, and community engagement

Article Title: Fostering cultural change in research through innovative knowledge sharing, evaluation, and community engagement strategies

Article References: Rho, J., Sheu, J.-K., Forbes, A., Tsai, D. P., Alú, A., Li, W., Brongersma, M. L., Choi, J., Garcia de Abajo, F. J., Na Liu, L., Szameit, A., Schloemer, T., Tittl, A., Chemnitz, M., Wang, C., Zhang, J., Kivshar, Y., Cui, T. J., Ma, R.-M., … Matricardi, C. (2026). Fostering cultural change in research through innovative knowledge sharing, evaluation, and community engagement strategies. npj Science of Learning, 11(1), Article 49. https://doi.org/10.1038/s41539-026-00449-z

Image Credits: AI Generated

DOI: 10.1038/s41539-026-00449-z

Keywords: research culture, open science, knowledge sharing, research evaluation, research assessment, community engagement, reproducibility, npj Science of Learning, academic incentives, citizen science, narrative CV, meta-science