World Health Organization Report on Dementia Research Priorities Sparks Debate
A report supported by the World Health Organization lists 59 research priorities the authors believe would reduce the burden of dementia in the coming decade.
A commentary in the same issue of The Lancet Neurology ripped the report’s positions, however, touching off a back-and-forth between the sides.
The report, “Research priorities to reduce the global burden of dementia by 2025,” listed priorities in dementia prevention, diagnosis, treatment, and care.
The University of Southern California researcher who wrote the commentary contended that the priorities amounted to a plea for continued funding of research that has had a poor track record of success.
The critique led to a lengthy correspondence in which WHO representatives, supported by researchers from Oxford University and Sweden’s Karolinska Institutet, defended the report’s positions.
The authors of the report described their list of research priorities as an opportunity to create a “global dementia action plan” to reduce the worldwide burden of the disorder.
WHO asked an advisory board that included internationally recognized dementia experts to come up with a way to identify research priorities. Others on the board included policy makers, researchers, representatives of organizations who fund research, patients’ representatives, and advocates of research funding and support.
The group decided to adopt the Child Health and Nutrition Research Initiative’s method of determining research priorities. It asked more than 2,000 researchers and others for research ideas, in the form of research questions that should be answered. Ten percent, or 201, responded.
Twenty-three of the 33 nations the respondents represented were developed countries. The others were developing countries.
The 201 experts came up with 863 research ideas, which the advisory board organized into 59 research avenues. The research ideas covered seven themes: Prevention, identification, and reduction of risk; diagnosis, biomarker development, and disease monitoring; pharmacological and non-pharmacological clinical–translation research; quality of care for people with dementia and their care-givers; delivery of care and services for people with dementia and their care givers; physiology and progression of normal aging and disease processes; and public awareness and understanding.
The research avenues were then ranked by 162 experts, including 82 of the 201 who provided research ideas. An important factor in the scoring was whether scientists could complete the research stemming from each idea in the next decade and, if so, whether the research could reduce the burden of dementia. Ideas were also ranked by their potential to produce a conceptual breakthrough in the field.
Several of those ranking the ideas expressed concern that some of the research avenues would not be a fair means of helping those at risk of dementia, patients and their families.
Six of the top 10 priorities covered prevention, identification, and reduction of dementia risk, and delivering and ensuring quality of care for people with dementia and their care givers. Diagnosis, biomarker and treatment development, basic research into disease mechanisms, and public awareness were also high on the priorities list.
Researchers said the research avenues should inform policy in a way that allowed resources and investments to be allocated on a global scale.
The report prompted Dr. Lon S. Schneider of the University of South California’s Keck School of Medicine to write a biting commentary called “WHO’s dementia research priorities: a prescription for failure?”
He questioned the entire priority-drafting exercise.
To start with, he said, the group consisted mainly of researchers and others from developed countries. He also said that since many of the prioritization participants had submitted research ideas, it was likely they would give high scores to those ideas.
He also quarreled with what he considered the group’s pessimism about the possibility of a paradigm shift in dementia research in the coming decade.
Given that dementia is a complex condition, he argued that WHO’s research priorities were “curiously simple and prescriptive.” In fact, they were more research techniques than priorities, he said.
He maintained that if WHO had come up with a differently composed group, including geriatricians, care givers, social service agencies, and hospitals, the research priorities could have been different.
Government support of the priorities will create a barrier to other research as well as to critical thinking, sound science, and creativity, he asserted. And he contended the priorities would do little to reduce redundancy, particularly in drug development.
“Research priorities as a matter of policy should not be generated by the people doing the research,” he wrote. The priorities that WHO came up with were “driven by advocacy, opinion, and popular and corporate considerations, while based on scant evidence,” he contended.
WHO representatives issued a reply defending the priorities and the method used to arrive at them. They said the “range of priorities is broad, multidisciplinary, and truly novel, going beyond the quest for a cure for dementia—from prevention and care, to issues of policy and health systems.” They also insisted that undeveloped countries were included in the process.
WHO said the method it used captured “the wisdom of the crowd” — a contention that prompted Schneider to reply that “the crowd” in this case was working to prioritize its own view of research. Telling policy makers that these are the areas that should be funded without offering evidence risks money being wasted, he added.
Researchers from Oxford University and the Karolinska Institutet hailed WHO’s effort, saying it was refreshing to see that the report had prioritized prevention research. They did agree with Schneider that dementia is a complex issue, one that is part of what they labeled a geriatric syndrome. Current research methods often overlook the complexity, they said.
Their views further invigorated Schneider, who said their comments illustrated the constraints of WHO’s approach. “ Commenting on WHO’s contention that dementia risk factors should be investigated, he said that “as a matter of policy, we should embark on public health efforts to mitigate known risks.”
While some trials of treatments that could prevent dementia are needed, he argued, testing what is already known is “not a priority.”
WHO had a different view of the Oxford-Karolinska group’s contribution to the debate. It agreed that the academics emphasized the need to contextualize research priorities. But the university researchers also underscored that prevention should not be the sole focus of research — that it should also include ways to mitigate the effects of dementia once it occurs.
Surprisingly, the WHO representatives said the safety profiles of immunotherapies that researchers are using against amyloid-beta deposition in the brain — a hallmark of Alzheimer’s disease — appear “to have re-galvanised our hopes that a cure might be found in the next two decades.”
While there is no evidence that this approach prevents or treats dementia, the comment indicated that WHO assumes it will work. The WHO representatives suggested that cost-effectiveness and global access to such treatments will depend on healthcare and health systems research.
Although WHO’s research-prioritization effort sparked criticism, it represents one of the most comprehensive attempts ever to gather information about what people with an interest in dementia care about. Whether WHO’s optimism that research aimed at preventing and treating dementia can lead to a reduction in the global burden of the condition in the coming decade remains to be seen.