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The Need for Open-Access, Structured Data in Clinical Brain Research

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The Need for Open-Access, Structured Data in Clinical Brain Research Bunevicius A. Biomed Data J. 2015;1(1): 27-32 http://dx.doi.org/10.11610/bmdj.01104 ISSN 2367-5322 datajournals.eu: The European Open Data portal Policy Paper The Need for Open-access, Structured Data in Clinical Brain Research Adomas Bunevicius Neuroscience Institute and Department of Neurosurgery, Lithuanian University of Health Sciences, Kaunas, Lithuania http://lsmuni.lt/en/structure/medical-academy-/neuroscience-institute/ ARTICLE INFO : A B S T R A C T RECEIVED: 22 Sep 2014 Neurological and psychiatric disorders are considered major public health prob- REVISED: 02 Nov 2014 lems associated with a significant number of suffering patients and an enormous ACCEPTED: 14 Nov 2014 socioeconomic burden to societies. Therefore, significant research funds have ONLINE: 04 Jan 2015 been allocated towards improving outcomes of patients suffering from brain disorders. In recent years, researchers have been facing a constantly growing worldwide pressure to make their datasets freely and readily available to other K E Y W O R D S: researchers and the public. The major goal of this movement is to allow re-use of already collected data in order to facilitate medical progress. There are numer- Open Access ous ways that clinical neuroscience researchers and research organizations Dataset commonly employ to make their databases available. Institutional databases and Brain Diseases publicly available research and clinical data repositories and registries are the Disease Models most common ways to share data among researchers and organizations in order Data Sharing to facilitate collaboration. In addition, numerous traditional neuroscience peer reviewed journals have implemented various data sharing policies. Furthermore, a few traditional clinical neuroscience peer review journals have recently started accepting dataset papers. Finally, there is a constantly growing number of data- base journals which accept clinical neuroscience research datasets for publica- tion. Potential for improving of citation metrics is among the important ad- vantages for authors considering publishing their databases in dataset journals. Creative Commons BY-NC-SA 4.0 © 2015 Hosting by Procon Ltd. All rights reserved. The human brain is a susceptible organ to numer- brovascular diseases, nervous system malignan- ous disorders that may be attributed to both ex- cies, infections, trauma and functional disorders. ternal and internal causes and develop across a Neurological disorders affect more than 1 billion lifespan. Brain disorders comprise a vast and het- people worldwide and account for 6.8 million erogeneous group of diseases affecting both cen- deaths, which is 12 percent of total deaths.1 Pop- tral and peripheral nervous systems at both struc- ulation based studies carried out in Western soci- tural and functional levels. Neurological disorders eties have estimated that more than one quarter and mental illness are considered two major of individuals met the diagnostic criteria for at groups of brain disorders. Neurological disorders least one mental disorder within a 12-month pe- include but are not limited to neurodevelopmen- riod.2,3 tal disorders, neurodegenerative disorders, cere- Corresponding Author: Eiveniugatve 2, LT-50009, Kaunas, Lithuania; E-mail: [email protected] Bunevicius A. Biomed Data J. 2015; 1(1): 27-32 From an individual patient perspective, neuro- search funding agencies 10 and political and li- logical and psychiatric disorders are considered censing authorities 11 to make their raw structured among the most serious and debilitating condi- scholarly research data openly and readily acces- tions and are often associated with severe func- sible for other researchers and public. For many tional disability, significant reduction of health researchers and research organizations it is no related quality of life and poor prognosis. Due to longer a question whether scientific data should the lack of effective treatment modalities, brain be shared and that the amount of shared data will disorders are often incurable disorders resulting in increase exponentially in the nearest future. Aside gradual and progressive functional decline. From a from well expected benefits to society via acceler- public health perspective, neurological and psy- ated improvement of outcomes of patients suf- chiatric disorders are considered the major public fering from brain disorders, other potentially im- health problem associated with significant socio- portant advantages of data sharing for individual economic burden for societies that are mainly at- researchers and/or research organizations should tributed to significant financial efforts required for be acknowledged. Importantly, data sharing is as- treatment of patients with brain disorders and sociated with greater citation count. For instance, progressive decline in patient productivity. For ex- it has been demonstrated that papers with pub- ample, the economic cost of brain disorders was licly available data have received significantly estimated at about 798 billion Euros in 2010 in Eu- greater number of citations relative to papers rope.4 According to the World Health Organiza- without publicly available datasets.12 Further- tion, neurological and neuropsychiatric disorders more, data sharing is expected to increase visibil- should be considered among the most serious ity of researcher and institutional research output, public health problems causing greater disability improve publication and data quality and trans- than infectious disorders, malignancies, ischemic parency, increase collaboration opportunities heart disease, respiratory diseases and digestive among researchers and research organizations, diseases.5 It has been estimated that neurological reduce research costs allowing to re-use already disorders contributed to 92 million of disability- collected data and fulfil data sharing requirements adjusted life years (DALYs) lost in 2005.5 The same imposed by certain funding agencies and peer-re- study has projected a 12% increase of DALYs ac- viewed journals. Also, data sharing can have an counted by neurological disorders in 2030. The important moral benefit making each individual global burden of neurological and psychiatric dis- member of the scientific community feel more as orders is expected to increase significantly in the a team player of a scientific community with an ul- future mainly due to increased longevity and im- timate goal of more expedited advancement of proved patient survival.5 As a result, studies aim- research progress that would eventually translate ing to elucidate the underlying biological mecha- into reduced disease burden and patient suffering. nisms of brain disorders and to improve outcomes However, data sharing is still in its infancy of patients suffering from neurological and psy- stage facing numerous technical, institutional, chiatric conditions remain an important research ethical and cultural hurdles that preclude from funding priority.6,7 universal implementation of data sharing cul- These research efforts have significantly ad- ture.13 From an individual researcher perspective, vanced our understanding about underlying bio- a paucity of peer-reviewed journals accepting raw logical mechanisms of brain disorders and im- scientific biomedical research datasets for publica- proved outcomes of patients suffering from neu- tion, lack of knowledge on how the raw data rological and psychiatric disorders. Nevertheless, should be handled and presented, and uncertainty much more remains to be done in order to im- about potential uses and/or misuses of the data prove recognition and expand treatment option of can be considered as important obstacles for data patients suffering from brain disorders. To this sharing. In addition, lack of knowledge of univer- end, there is a rising worldwide movement en- sally accepted ethical guidelines and policies re- couraging sharing of scholarly research data with garding raw research data sharing, especially investigators and other interested parties.8 Data when considering studies involving human sub- sharing is expected to be the next giant step al- jects, is another important barrier for data shar- lowing re-using already collected scholarly data in ing. Furthermore, storage of large datasets can order to re-validate current knowledge and gen- impose significant challenges to traditional pub- erate new hypotheses leading towards improved lishers since data storage and sharing is associated patient outcomes. Researchers as well as aca- with a need to improve technological infrastruc- demic research institutions are facing a consist- ture that can consequentially increase publishing ently growing worldwide push from societies,9 re- costs to the journal. 28 The Need for Open-access, Structured Data in Clinical Brain Research To date, there are numerous ways that re- download under the Open Data Commons Attrib- searchers and clinicians working in the field of ution License. Finally, a number of psychiatry clini- neuroscience employ to share their research and cal trial datasets are available from the NIMH after clinical data (see Table 1). Deployment of clinical completion of required documentation. and research databases in institutional data re- There are numerous national and international positories is the most commonly employed way by clinical registries that prospectively collect clinical researchers and research organizations to store and outcome data of patients suffering from brain research data. Importantly, some organizations
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