This article is published in Kavli Trust’s annual report 2023.
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“We want to ensure our profits support health research that makes a real difference in society,” says General Manager of Kavli Trust, Ingrid Paasche. “That’s why our programme was carefully designed.”
Inspired
It began in 2016 at a Dam Foundation research conference. Program manager Jan-Ole Hesselberg revealed a startling fact: 85% of global health research is wasted. Citing a 2009 Lancet study, he explained that an estimated NOK 850 million is invested annually in research that ultimately fails to benefit patients, families or healthcare professionals.
This revelation sparked action. Former Kavli Trust General Manager, Inger Elise Iversen, sought advice from Dam Foundation and Hesselberg. Determined to support research with real-world impact, the Kavli Trust board was eager to explore more targeted, quality-driven funding strategies.
“This was the catalyst for Kavli Trust’s unique and renowned health research programme,” says Ingrid Paasche.
Preventing wasted research
“Wasted health research is preventable,” declares Jan-Ole Hesselberg. His collaboration with Dam Foundation, which continues today, led to the Kavli Trust programme on health research in 2017, developed under Hesselberg’s leadership alongside former Head of Programme Development at Dam Foundation, Ida Svege.
“Poor methodology, unpublished findings or duplicated research all contribute to waste,” Hesselberg explains. “Further research into a treatment’s effect is pointless if patients can’t or won’t ultimately use it.”
A UK model
The programme adopts a model from the UK non-profit James Lind Alliance, prioritising identification of “knowledge gaps” – areas needing urgent research.
“Early on, mental health and musculoskeletal disorders emerged as two underfunded areas in need of greater research,” says Hesselberg.
Thus, the Kavli Trust board initially focused on underfunded child and adolescent mental health (2017-2022), a focus renewed until 2025 with a budget of NOK 215 million.
Identifying research needs
Each year, a thorough process involving both experts and users identifies new knowledge gaps in child and adolescent mental health.
“By knowledge gaps,” clarifies Program Manager Jan-Ole Hesselberg, “we mean unanswered research questions.”
The Kavli Trust Strategic Scientific Committee currently consists of public health professional and former Director Arne Bjørndal and Senior Adviser Karianne Hammerstrøm Nilsen at the Regional Centre for Child and Youth Mental Health and Child Welfare (RBUP Region
East and South), and psychologist and Senior Adviser at Akershus University Hospital Johan Siqveland.
The committee makes systematic searches in the research literature to uncover research questions to which we have no answers. The committee often reveals dozens of evidence gaps.
PROGRAM MANAGER: Jan-Ole Hesselberg. Photo: Hege Bjørnsdatter Braaten/ Dam Foundation
User input
Patients, families, and healthcare professionals then vote on the most critical evidence gaps. “Those with the most votes are included in funding announcements,” says Hesselberg. “Applicants must address one or more of these prioritised gaps.”
This user participation goes beyond typical funding practices, as Hesselberg highlights. The programme further requires funded projects to include at least two user representatives.
Kavli Trust General Manager, Ingrid Paasche, emphasises the importance of user involvement: “To ensure our funding supports valuable research, we must involve those who will ultimately benefit from it, alongside experts.”
All proposals undergo evaluation by a separate, international scientific committee.
“We aimed to recruit the world’s leading specialists,” says Hesselberg, “and the interest and expertise exceeded expectations.”
Combating publication bias
Publication bias, where research is selectively published based on positive results, is another factor contributing to wasted research.
“‘Exciting’ findings or findings that support the researcher’s hypothesis are often published to a greater extent, which distorts the overall picture,” explains Hesselberg. Kavli Trust therefore requires pre-registration of research hypotheses, design and methods in open registries.
“Pre-registration allows readers to verify what researchers planned to do,” clarifies Hesselberg.
“Kavli Trust requires open access publishing,” Hesselberg continues, “ensuring anyone can benefit from the research results, not just those with costly journal subscriptions. This aligns with a broader movement within the research community, prioritising wider knowledge access.”
High standards
The identified evidence gaps require ambitious, well-designed projects with strong methodology. “This ensures funding goes to research that delivers real benefits for users,” says Jan-Ole Hesselberg.
“Our approach may seem exclusionary at times, but it guarantees high-quality research,” Hesselberg clarifies.
He praises the Board of Kavli Trust, which to a greater extent than most donors has relinquished power over which projects the foundation will support.
“While Kavli Trust retains ultimate authority, they’ve adopted a unique process that empowers patients, healthcare professionals and researchers. This hands-off approach is rare and ensures high-quality research,” Hesselberg explains.
“The response to the Kavli Trust programme on health research has surpassed all expectations,” concludes Hesselberg. “Many find it impressive that such a small programme has meticulously systematised the entire process, demonstrating clear thinking from board priorities to project selection.”