Barriers and facilitators for disease registry systems: a mixed-method study

Lazem, Mina; Sheikhtaheri, Abbas

doi:10.1186/s12911-022-01840-7

Cited by 16 publications

(17 citation statements)

References 40 publications

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“…Data barriers remain common challenges in public health research, despite efforts to facilitate improvements [57, 58]. As Puducherry has the advantage of a relatively small size and well-connected healthcare facilities, efforts need to be taken to improve a central, disease specific data collection system, incorporating all the healthcare facilities in the State [59].…”

Section: Discussionmentioning

confidence: 99%

Barriers to climate change and health research in India: A qualitative study

Shrikhande

Merten

Cambaco

et al. 2023

Preprint

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Almost a quarter of the global burden of disease and mortalities is attributable to environmental causes, the magnitude of which is projected to increase in the near future. Evidence informed policies and interventions are a key element in the adaptation response for countries. However, in many low- and middle-income settings, there remains a large gap in the synthesis of evidence on climate-sensitive health outcomes. In India, now the worlds most populous country, little remains known about the impacts of climate change on various health outcomes. In light of Indias vulnerability to climate change, the growing population and the high burden of disease, it is imperative to understand the challenges faced in conducting environmental health research. In this study, we employed key informant interviews to understand the perceived research barriers amongst health professionals, including medical researchers, and professionals involved in environmental policies and planning in Puducherry, India. The findings were analysed using data driven qualitative thematic analysis to elaborate the major perceived barriers to conducting environmental health research. Challenges in data collection systems and accessing data was the major barrier along with the need for strengthening technical and methodological research capacity. Participants described working in the backdrop of insufficient prioritization and knowledge on the wide range of impacts of climate change on health, both in the policy context and amongst scientists, which was also perceived to be a challenge in conducting environmental health research. Finally, limited resources to conduct research and the tendency to focus on conventional climate related health outcomes were also seen as challenges to advancing research on this topic. In the context of the paucity of data on environmental health from India, despite recognised climate change related health vulnerabilities, these findings could contribute to the development and improvement of interventions conducive to a strong research environment.

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Section: Discussionmentioning

confidence: 99%

Barriers to climate change and health research in India: A qualitative study

Shrikhande

Merten

Cambaco

et al. 2023

Preprint

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“…First, we have demonstrated a large variability in data collection processes, inclusion criteria, and definitions of parameters. Data harmonisation (i.e., merging data with varying formats and definitions) and recoding would be necessary, although it would result in less specific data and probably the loss of information ( 3 , 19 ). The balance between comprehensiveness and feasibility remains challenging.…”

Section: Discussionmentioning

confidence: 99%

The strengths and complexities of European registries concerning paediatric kidney transplantation health care

et al. 2023

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IntroductionPatient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.MethodsA list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.ResultsIn total, 109 PKT centres performing PKT surgery were identified in the 27 EU Member States. Currently, five European PKT registries are actively collecting data. In 39% of these centres, no data were registered within any of these five existing international registries. A large variety was observed in the number of patients, centres, and countries involved in the registries. Furthermore, variability existed regarding the inclusion criteria, definitions used, and parameters collected. Collection of perioperative urologic data are currently underrepresented in the registries.DiscussionCurrently, multiple registries are collecting valuable information in the field of PKT, covering the majority of PKT centres in Europe. Due to a large variety in the parameters collected as well as different focuses, data collection is currently fragmented and suboptimal; therefore, the current existing data are incomplete. In addition, a considerable proportion of the transplantation centres do not enter data in any international registry. Combining available information and harmonising future data collection could empower the aim of these registries—namely increasing insights into the strengths and potential of current care and therefore improve healthcare

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“…Evaluating data quality, giving feedback and correcting data is time consuming. Other studies have reported similar problems related to data quality evaluation [57,58]. In this case, hiring a qualified person for these functions will be required.…”

Section: Limitationsmentioning

confidence: 90%

“…Furthermore, the organization of variables in different questionnaires was not approved by experts in some cases. According to previous studies [57,58], other registries also faced such limitations and this could cause problems in a registry. Therefore, during the pilot, by holding various meetings, the minimum mandatory data and their organization were finalized with the participation of nephrologists.…”

Section: Limitationsmentioning

confidence: 99%

Development and pilot implementation of Iranian Hemolytic Uremic Syndrome Registry

Lazem

Hooman

Sheikhtaheri

2022

Orphanet J Rare Dis

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Background Patients with Hemolytic Uremic Syndrome (HUS) face late diagnosis and lack of appropriate treatment because of a lack of knowledge and experience in this field. A prerequisite for such knowledge is the development of research infrastructures such as a registry system. Therefore, this study aimed to develop and describe the HUS registry in accordance with the Iranian health system and implement its software system. Methods We first interviewed 10 pediatric nephrologists and after analyzing the interviews, we identified the features and requirements and the data related to HUS. Then, during two rounds of the Delphi technique (the first round with 23 participants and the second round with 18 participants), the model of this registry was finalized based on the agreement of at least 75% of specialists. At the next step, based on the agreed requirements, IRI.HUS.Reg (Iranian Hemolytic Uremic Syndrome Registry) software was developed and implemented in a pediatric hospital. Results We classified 369 meaning units of interviews in 41 codes and 7 final themes including purposes of the registry (10 codes), inclusion criteria (7 codes), data collection method (4 codes), data quality control (6 codes), data sources (4 codes), data analysis (3 codes) and software features (7 codes). These 7 feature groups (67 subgroups) and 12 data classes (138 data elements) include demographic data, referrals, examinations, clinical signs, causes, laboratory tests, medical histories, paraclinical measures, treatments, outcomes, patient’s status at discharge, and follow-up data were reviewed by the Delphi panelists, and finally, 64 features and 131 data elements were accepted by at least 78% agreement. Then, we developed and implemented a registry software system in a hospital. Conclusion We implemented IRI.HUS.Reg based on related features, 12 data classes agreed by specialists, literature review, and comparison with other existing registries. Therefore, the data collected in this registry can be compared with other data from existing registries in other countries.

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Barriers and facilitators for disease registry systems: a mixed-method study

Cited by 16 publications

References 40 publications

Barriers to climate change and health research in India: A qualitative study

Barriers to climate change and health research in India: A qualitative study

The strengths and complexities of European registries concerning paediatric kidney transplantation health care

Development and pilot implementation of Iranian Hemolytic Uremic Syndrome Registry

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