The review, conducted by a team of researchers based primarily in Australia and the United States, followed the PRISMA-ScR framework for scoping reviews. The authors searched four major databases—Google Scholar, PsycINFO, PubMed, and EMBASE—for peer-reviewed, English-language publications from 2015 to 2025 that described lived experience involvement going beyond standard consultative or participatory methods. After screening 5,228 records and confirming the lived experience credentials of authors where necessary, only twelve publications met the stringent inclusion criteria. That small yield is itself one of the most telling results: in a decade of intense policy attention on patient and public involvement, credible accounts of people with cancer actually leading research are vanishingly rare.

Geographically, the eligible publications came overwhelmingly from high-income countries, with four from the United Kingdom, three from the United States, two from the Netherlands, and one each from Australia, Sweden, and Switzerland. Nearly all—83 percent—focused on adult cancer, with just two addressing adolescents and young adults, a population that faces distinct survivorship challenges. Most of the included papers were editorials or commentaries rather than empirical studies, and five were original research articles. The majority concentrated on survivorship care, psychosocial experiences, and quality-of-life research rather than on biological, epidemiological, or clinical trial research, suggesting that lived experience leadership, where it exists at all, has been confined largely to the psychosocial end of the cancer research spectrum.

The conceptual picture that emerged was one of a continuum. At the most common end, lived experience leadership was framed as a co-researcher or research partner model, in which an adult with cancer or a caregiver joins the research team with equal membership alongside academic and clinical investigators. But equal membership, the authors note, does not equal authority. In most described initiatives, the responsibilities of lived experience researchers centered on providing feedback on documents drafted by others. When they did lead document development, it was typically limited to public-facing materials related to recruitment and dissemination—never to the research questions themselves, the study methods, or the interpretation of findings. Decision-making authority, in other words, remained with academic investigators without lived experience.

Only four of the twelve publications described what the reviewers considered true lived experience research leadership, meaning that a person with both academic credentials and lived experience of cancer held responsibility for the research questions, the methodology, or the writing of the publication. Two publications invoked the concept of the embodied researcher—a figure who draws deliberately on both lived and academic expertise to lead research rather than serving as a source of consultation alongside principal investigators without lived experience. Crucially, the embodied researcher framework treats experiential knowledge not as something to be bracketed or suppressed in the name of objectivity, but as a reflexively integrated source of empirical insight across every stage of the research process.

Only three publications were led by researchers who identified as having lived experience of cancer, and just one explicitly used the embodied research framing. The review also found that lived experience leadership was nearly absent from article titles, mentioned in all but one case only within methods sections under the familiar umbrellas of patient and public involvement or consumer engagement. Five publications did have a first author with lived experience, and four acknowledged that experience in the text or affiliations, but authorship position alone did not reliably signal substantive leadership in study conceptualization, design, or decision-making. Notably, the review found no examples of research leadership by family members or caregivers of people with cancer, who appeared mainly as minority members of larger advisory groups.

The barrier most consistently cited across the literature was funding. If funding were acquired, publications noted, it could provide salaries or reimbursement of participation costs such as travel and time for lived experience researchers—a basic prerequisite for anyone hoping to lead rather than volunteer intermittently. Enablers included tailored training programs matched to the nature and duration of the leadership role and the research focus, whether psychosocial or biomedical, as well as formal terms of reference or strategy documents that clearly specify the roles, responsibilities, and boundaries of lived experience experts. The authors argue that these practical mechanisms, while necessary, are insufficient without deeper structural change in how research institutions conceptualize expertise.

A provocative thread running through the review concerns the relationship between lived experience and scientific objectivity. The authors push back against the concern that research led by people with lived experience introduces unacceptable subjectivity, pointing out that subjectivity is a universal feature of all scientific inquiry. Every scientist, they argue, enters a study with preconceived notions, disciplinary biases, and social positions that shape how questions are framed, how outcomes are defined, and how findings are interpreted. The critical distinction, supported by established methodological principles, lies in whether subjectivity is left unexamined or rigorously engaged through reflexivity and transparency. By that standard, a researcher who has survived cancer and discloses and reflects on that positionality is arguably on firmer methodological ground than one whose relevant experiences go unacknowledged.

The WHO estimates that one in five people will develop cancer in their lifetime, which implies that a significant portion of the existing cancer research workforce already carries direct or indirect experience of the disease—as patients, survivors, family members, or caregivers. Yet very few cancer researchers report or acknowledge such experience in their scientific outputs, and it remains unclear why the field differs so markedly from mental health research, where an emerging lived experience workforce leads embodied research and where the field has begun confronting academic ableism and the stigma, stress, and disclosure dilemmas that early-career lived experience researchers face.

The review closes with three recommendations. First, the field needs clearer conceptual frameworks and positionality guidance that distinguish academic researchers with lived experience who lead embodied research from part-time or voluntary co-researchers and from advisory panel members. Second, institutions should build a sustainable pipeline of embodied researchers through protected funding, tailored training, mentorship, and equitable remuneration, with genuine leadership defined as authority over agenda setting, methodological decisions, interpretation, and dissemination. Third, journals and funding bodies should strengthen reporting guidelines to require detailed descriptions of leadership structures, decision-making authority, and resourcing, enabling comparability across studies. The authors, all of whom have lived experience of cancer diagnosed in childhood or young adulthood, acknowledge limitations including the English-language restriction and the small team, but they argue the direction is clear: cancer research must move beyond binary distinctions between researchers and patients toward a model that recognizes and empowers those who stand in both worlds, transforming symbolic inclusion into accountable, lived experience–led science.

Subject of Research: Lived experience leadership in academic cancer research

Article Title: Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts

Article References: Schilstra, C. E., Glinatsis, A., Emery, M., Zebrack, B., Cheung, C. K., Smith, A., & Sansom-Daly, U. M. (2026). Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02119-w

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02119-w

Keywords: cancer research, lived experience, embodied researcher, patient and public involvement, scoping review, research leadership, cancer survivors, co-researchers, psycho-oncology, research methodology, health equity, Journal of Cancer Survivorship