“At Kavli Trust we constantly ask ourselves: How do we ensure that we support good causes that are guaranteed to be useful,” says General Manager of Kavli Trust, Inger Elise Iversen.
In 2016, she was present at a research conference at Dam Foundation (Stiftelsen Dam) where the foundation’s programme manager Jan-Ole Hesselberg spoke about wasted health research. Iversen was surprised to learn that 85 percent of all health research in the world has been wasted. According to a study, published in The Lancet in 2009, every year the world pours 100 billion USD into health research that adds nothing of value – neither for health professionals, patients or their relatives.
“The Kavli Trust Board has been very forward-thinking and wanted to learn more about how we could allocate research funds more purposefully and with better quality,” she says.
After the conference, Iversen contacted Dam Foundation and Hesselberg for advice on how Kavli Trust could best ensure that the foundation’s funds went to research that actually makes a difference.
Can be avoided
“Wasted health research can be avoided,” says Jan-Ole Hesselberg.
The contact with Dam Foundation resulted in a collaboration in 2017 named the Kavli Trust Programme on Health Research, under the leadership of Hesselberg and Head of Programme Development at Dam Foundation, Ida Svege.
“There are a variety of reasons why research is wasted,” according to Hesselberg:
The methods and planning may be poor, some results are never published, and some research is conducted in areas where the evidence is already good enough and further verification is unnecessary.
“In some cases it may not be useful to do further research on the effect of a drug, if patients are unable or unwilling to use it,” Hesselberg explains.
The structure of the Kavli Trust Health Research Programme is based on a model developed by the James Lind Alliance in the UK. The key was to develop a method for identifying evidence gaps, i.e. what evidence is lacking and where there is a particular need for more research.
“Two areas stood out as underfunded: mental health and musculoskeletal disorders,” says Hesselberg.
The Board of Kavli Trust thus decided to direct all allocations from the new health research programme to child and adolescent mental health in the years 2017-2022. The programme has a budget of NOK 200 million for the years 2017 to 2025.
Identifying the evidence gaps: Thorough process
Before each annual call for proposals, new evidence gaps within child and adolescent mental health are identified through a thorough process, involving both professionals and users.
“In this context, evidence gaps are meant as research questions where we do not yet have the answers,” explains Ida Svege.
The Kavli Trust Strategic Scientific Committee 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 Johan Siqveland, psychologist and senior adviser at Akershus University Hospital.
The committee makes systematic searches in the research literature to uncover research questions to which we have no answers. The searches often reveals dozens of evidence gaps.
“Patients, relatives and healthcare professionals are then invited to vote on which evidence gaps they believe should be prioritised. Those with the most votes will be part of the call, which outlines the evidence gaps researchers can apply for funding for,” explains Ida Svege.
This means that applicants’ projects must respond to one or more of the evidence gaps identified in the call.
Kavli Trust takes user involvement one step further than most funders by involving patients, relatives and health professionals in the work of finding evidence gaps. In addition, at least two user representatives must be involved in the research project itself.
“Kavli Trust will make sure that our research funds go to useful health research. To achieve this, we must involve those who will benefit from it as well as the experts,” says General Manager of Kavli Trust, Inger Elise Iversen.
THE TEAM: General Manager of Kavli Trust, Inger Elise Iversen, Senior Adviser Ida Charlotte Svege and Programme Manager Jan-Ole Hesselberg of the Kavli Trust Programme on Health Research. (Photo: Anne Elisabeth Næss / Kavli Trust)
A separate, international scientific committee screens the applications that are submitted.
“We started at the top of the list of the world’s most prominent experts, and did not get far down the list until we had recruited the number we needed,” Hesselberg says. He adds that the interest in joining the committee was greater than they thought.
“The competence is sky high and they screen the applications very thoroughly,” says Svege.
“We have mostly received positive feedback on the method, but some believe that our strict guidelines disrupt research integrity. Academic freedom is an important issue, one that we believe our work does not impact on,” she stresses.
Publication bias, i.e. when the result of a study influences the decision to publish it, is one of several reasons why research is often wasted.
“‘Exciting’ findings or findings that support the researcher’s hypothesis are often published to a greater extent, which gives a skewed picture,” Svege says. Therefore, Kavli Trust requires that the research projects’ hypotheses, designs and methods must be preregistered in open registers.
“That this is registered in advance, is essential. The reader of an article can check for themselves that the researchers did what they said they would do,” Hesselberg explains.
“Unrestricted open access to the published output is another requirement, so that anyone can access the results, not just those who have subscriptions to expensive journals. This is an important demand and a general trend in the research community,” says Svege.
“The evidence gaps that have been identified require ambitious and solid projects at the highest methodological level. So far, prominent research environments have applied and been allocated funds for the programme,” she continues.
Together, all stages of the call for proposals help to ensure that the funds eventually go to research that will make a difference.
“In some ways, our method is a bit exclusive. However, it does ensure high quality,” Hesselberg adds.
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.
“Of course, they have the formal power to interfere. But they have adopted a process that distributes power to patients, healthcare professionals and researchers, and they keep their fingers off the plate. This is rare and helps to raise the quality,” Hesselberg states.