12,000 patients participated in wasted research

Is there less wasted health research in Norway and the Nordic countries compared to the rest of the world? This is a question that the Dam Foundation has investigated. The answer is simple: No. A survey shows that 12 000 patients in Norway have participated in research that has remained unpublished.

This article is published in Kavli Trust’s annual report 2023.

”We like to think we’re exceptional in Norway, but the truth is, we also waste medical research,” says Jan-Ole Hesselberg of Dam Foundation and program manager of the Kavli Trust Programme on Health Research.

A Dam Foundation survey of 474 clinical studies across the Nordic countries – involving 84,000 people – found 22% were never published. Norway ranked worst: 29% of studies, with 12,000 patient participants, remained unpublished. Even top institutions like NTNU (one-third of studies unpublished) and the University of Oslo (2,000 wasted patient involvements) are not immune.

Shocking results

”These results are deeply concerning,” says Hesselberg. ”Unpublished research is a major problem. We knew it existed in the Nordics, but not to this extent.”

Reasons vary: not enough participants, analysis difficulties or simply lack of time. Hesselberg notes that research without obvious benefit to commercial sectors or researchers’ careers is especially likely to go unpublished.

Patients at risk

Patients participate in studies to access experimental treatments or aid scientific progress, often both.

”Knowing their efforts may end in a drawer would likely be upsetting,” says Hesselberg. ”Thousands needlessly faced potential risk, and this can damage trust in health research.”

Some argue against publicly airing these issues. Hesselberg disagrees:

”To build trust, we must be open about challenges and address them.”

Science suffers

Beyond the ethical implications for patients, unpublished studies deprive science of vital data. ”All results, even incomplete ones, have value,” emphasises Hesselberg.

Partial results can be foundational or included in larger meta-analyses. Errors revealed in one study can prevent them in future attempts. Seemingly isolated, incomplete studies might hold the answers researchers across the globe are seeking.

”Even a failed study, due to an unworkable treatment, offers crucial insights for other researchers,” Hesselberg stresses. ”Unpublished work also means studies might be unnecessarily replicated, due to researchers being unaware of similar efforts.”

Legal solutions?

The UK is moving towards legally mandating timely publication of results, barring non-compliant researchers from undertaking new work. Hesselberg supports a similar approach in Norway.

While Europe has regulations for drug and device research, and Norway aligns with the World Health Organization’s call for publication within a year, Hesselberg notes a crucial point: ”Enforcement is lacking. Publishing doesn’t have to mean a journal article. Making datasets available, even without analysis, clears a low bar and delivers immense value.”