Cargando…

Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example

In 2008 the National Institutes of Health established the Research, Condition and Disease Categorization Database (RCDC) that reports the amount spent by NIH institutes for each disease. Its goal is to allow the public “to know how the NIH spends their tax dollars,” but it has been little used. The...

Descripción completa

Detalles Bibliográficos
Autores principales: Torrey, E. Fuller, Knable, Michael B., Rush, A. John, Simmons, Wendy W., Snook, John, Jaffe, D. J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7676683/
https://www.ncbi.nlm.nih.gov/pubmed/33211693
http://dx.doi.org/10.1371/journal.pone.0241062
_version_ 1783611821929791488
author Torrey, E. Fuller
Knable, Michael B.
Rush, A. John
Simmons, Wendy W.
Snook, John
Jaffe, D. J.
author_facet Torrey, E. Fuller
Knable, Michael B.
Rush, A. John
Simmons, Wendy W.
Snook, John
Jaffe, D. J.
author_sort Torrey, E. Fuller
collection PubMed
description In 2008 the National Institutes of Health established the Research, Condition and Disease Categorization Database (RCDC) that reports the amount spent by NIH institutes for each disease. Its goal is to allow the public “to know how the NIH spends their tax dollars,” but it has been little used. The RCDC for 2018 was used to assess 428 schizophrenia-related research projects funded by the National Institute of Mental Health. Three senior psychiatrists independently rated each on its likelihood (“likely”, “possible”, “very unlikely”) of improving the symptoms and/or quality of life for individuals with schizophrenia within 20 years. At least one reviewer rated 386 (90%), and all three reviewers rated 302 (71%), of the research projects as very unlikely to provide clinical improvement within 20 years. Reviewer agreement for the “very unlikely” category was good; for the “possible” category was intermediate; and for the “likely” category was poor. At least one reviewer rated 30 (7%) of the research projects as likely to provide clinical improvement within 20 years. The cost of the 30 projects was 5.5% of the total NIMH schizophrenia-related portfolio or 0.6% of the total NIMH budget. Study results confirm previous 2016 criticisms that the NIMH schizophrenia-related research portfolio disproportionately underfunds clinical research that might help people currently affected. Although the results are preliminary, since the RCDC database has not previously been used in this manner and because of the subjective nature of the assessment, the database would appear to be a useful tool for disease advocates who wish to ascertain how NIH spends its public funds.
format Online
Article
Text
id pubmed-7676683
institution National Center for Biotechnology Information
language English
publishDate 2020
publisher Public Library of Science
record_format MEDLINE/PubMed
spelling pubmed-76766832020-12-02 Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example Torrey, E. Fuller Knable, Michael B. Rush, A. John Simmons, Wendy W. Snook, John Jaffe, D. J. PLoS One Research Article In 2008 the National Institutes of Health established the Research, Condition and Disease Categorization Database (RCDC) that reports the amount spent by NIH institutes for each disease. Its goal is to allow the public “to know how the NIH spends their tax dollars,” but it has been little used. The RCDC for 2018 was used to assess 428 schizophrenia-related research projects funded by the National Institute of Mental Health. Three senior psychiatrists independently rated each on its likelihood (“likely”, “possible”, “very unlikely”) of improving the symptoms and/or quality of life for individuals with schizophrenia within 20 years. At least one reviewer rated 386 (90%), and all three reviewers rated 302 (71%), of the research projects as very unlikely to provide clinical improvement within 20 years. Reviewer agreement for the “very unlikely” category was good; for the “possible” category was intermediate; and for the “likely” category was poor. At least one reviewer rated 30 (7%) of the research projects as likely to provide clinical improvement within 20 years. The cost of the 30 projects was 5.5% of the total NIMH schizophrenia-related portfolio or 0.6% of the total NIMH budget. Study results confirm previous 2016 criticisms that the NIMH schizophrenia-related research portfolio disproportionately underfunds clinical research that might help people currently affected. Although the results are preliminary, since the RCDC database has not previously been used in this manner and because of the subjective nature of the assessment, the database would appear to be a useful tool for disease advocates who wish to ascertain how NIH spends its public funds. Public Library of Science 2020-11-19 /pmc/articles/PMC7676683/ /pubmed/33211693 http://dx.doi.org/10.1371/journal.pone.0241062 Text en © 2020 Torrey et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Torrey, E. Fuller
Knable, Michael B.
Rush, A. John
Simmons, Wendy W.
Snook, John
Jaffe, D. J.
Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title_full Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title_fullStr Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title_full_unstemmed Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title_short Using the NIH Research, Condition and Disease Categorization Database for research advocacy: Schizophrenia research at NIMH as an example
title_sort using the nih research, condition and disease categorization database for research advocacy: schizophrenia research at nimh as an example
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7676683/
https://www.ncbi.nlm.nih.gov/pubmed/33211693
http://dx.doi.org/10.1371/journal.pone.0241062
work_keys_str_mv AT torreyefuller usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample
AT knablemichaelb usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample
AT rushajohn usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample
AT simmonswendyw usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample
AT snookjohn usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample
AT jaffedj usingthenihresearchconditionanddiseasecategorizationdatabaseforresearchadvocacyschizophreniaresearchatnimhasanexample