Dataset Information

Members' of Parliament knowledge of and attitudes toward health research and funding.

ABSTRACT:

Background

Establishment of the Canadian Institutes of Health Research (CIHR) in 2000 resulted in increased funding for health research in Canada. Since 2001, the number of proposals submitted to CIHR that, following peer review, are judged to be of scientific merit to warrant funding, has grown by 77%. But many of these proposals do not receive funding because of budget constraints. Given the role of Members of Parliament in setting government funding priorities, we surveyed Members of Parliament about their knowledge of and attitudes toward health research, health research funding and CIHR.

Methods

All Members of Parliament were invited to participate, or to designate a senior aide to participate, in a 15-minute survey of knowledge of and attitudes toward health research, health research funding and CIHR. Interviews were conducted between July 15, 2006, and Dec. 20, 2006. Responses were analyzed by party affiliation, region and years of service as a Member of Parliament.

Results

A total of 101 of 308 Members of Parliament or their designated senior aides participated in the survey. Almost one-third of respondents were senior aides. Most of the respondents (84%) were aware of CIHR, but 32% knew nothing about its role. Participants believed that health research is a critical component of a strong health care system and that it is underfunded. Overall, 78% felt that the percentage of total government spending directed to health research funding was too low; 85% felt the same way about the percentage of government health care spending directed to health research. Fifty-four percent believed that the federal government should provide both funding and guidelines for health research, and 66% believed that the business sector should be the primary source of health research funding. Participants (57%) most frequently defined health research as study into cures or treatments of disease, and 22% of participants were aware that CIHR is the main federal government funding organization for health research. Participants perceived health research to be a low priority for Canadian voters (mean ranking 3.8/10, with 1 being unimportant and 10 being extremely important [SD 1.85]).

Interpretation

Our results highlight significant knowledge gaps among Members of Parliament regarding health research. Many of these knowledge gaps will need to be addressed if health research is to become a priority.

SUBMITTER: Clark DR

PROVIDER: S-EPMC2025626 | biostudies-literature | 2007 Oct

REPOSITORIES: biostudies-literature

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Publications

Members' of Parliament knowledge of and attitudes toward health research and funding.

Clark Daniel R DR McGrath Patrick J PJ MacDonald Noni N

CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20071001 9

<h4>Background</h4>Establishment of the Canadian Institutes of Health Research (CIHR) in 2000 resulted in increased funding for health research in Canada. Since 2001, the number of proposals submitted to CIHR that, following peer review, are judged to be of scientific merit to warrant funding, has grown by 77%. But many of these proposals do not receive funding because of budget constraints. Given the role of Members of Parliament in setting government funding priorities, we surveyed Members of ...[more]

PMID: 17954894

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Project description:Background Limited knowledge and unclear underlying biology of many rare diseases pose significant challenges to patients, clinicians, and scientists. To address these challenges, there is an urgent need to inspire and encourage scientists to propose and pursue innovative research studies that aim to uncover the genetic and molecular causes of more rare diseases and ultimately to identify effective therapeutic solutions. A clear understanding of current research efforts, knowledge/research gaps, and funding patterns as scientific evidence is crucial to systematically accelerate the pace of research discovery in rare diseases, which is an overarching goal of this study. Methods To semantically represent NIH funding data for rare diseases and advance its use of effectively promoting rare disease research, we identified NIH funded projects for rare diseases by mapping GARD diseases to the project based on project titles; subsequently we presented and managed those identified projects in a knowledge graph using Neo4j software, hosted at NCATS, based on a pre-defined data model that captures semantics among the data. With this developed knowledge graph, we were able to perform several case studies to demonstrate scientific evidence generation for supporting rare disease research discovery. Results Of 5001 rare diseases belonging to 32 distinct disease categories, we identified 1294 diseases that are mapped to 45,647 distinct, NIH-funded projects obtained from the NIH ExPORTER by implementing semantic annotation of project titles. To capture semantic relationships presenting amongst mapped research funding data, we defined a data model comprised of seven primary classes and corresponding object and data properties. A Neo4j knowledge graph based on this predefined data model has been developed, and we performed multiple case studies over this knowledge graph to demonstrate its use in directing and promoting rare disease research. Conclusion We developed an integrative knowledge graph with rare disease funding data and demonstrated its use as a source from where we can effectively identify and generate scientific evidence to support rare disease research. With the success of this preliminary study, we plan to implement advanced computational approaches for analyzing more funding related data, e.g., project abstracts and PubMed article abstracts, and linking to other types of biomedical data to perform more sophisticated research gap analysis and identify opportunities for future research in rare diseases. Supplementary Information The online version contains supplementary material available at 10.1186/s13023-021-02120-9.

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Dataset Information

Members' of Parliament knowledge of and attitudes toward health research and funding.

Background

Methods

Results

Interpretation

Publications

Members' of Parliament knowledge of and attitudes toward health research and funding.

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