Enabling informed policymaking for chronic kidney disease with a registry: Initiatory steps in Iran and the path forward

Niazkhani, Zahra; Cheshmekaboodi, Mojgan; Pirnejad, Habibollah; Makhdoomi, Khadijeh; Nikibakhsh, Ahmad Ali; Abkhiz, Saeed; Mivefroshan, Azam; Jafari, Laleh; Zeynali, Javad; Mahmoodzadeh, Hashem; Afshari, Ali; Bal, Roland

doi:10.1016/j.hlpt.2018.01.004

Cited by 6 publications

(5 citation statements)

References 29 publications

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“…Lastly, the Delphi survey was used to reach an agreement on the MDS of corrosive ingestion. This technique has been proven to be fitting for the evaluation of the requirements of health information systems (HISs) [ 52 ]. However, by using this method most opinions are disregarded.…”

Section: Discussionmentioning

confidence: 99%

Developing the minimum data set of the corrosive ingestion registry system in Iran

Mahmoudvand

Yazdani

Shafiee

et al. 2022

BMC Health Serv Res

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Background Corrosive ingestion is still a major health problem, and its outcomes are often unpredicted. The implementation of a registry system for poisoning with corrosive substances may improve the quality of patient care and might be useful to manage this type of poisoning and its complications. Therefore, our study aimed to establish a minimum data set (MDS) for corrosive ingestion. Methods This was an applied study performed in 2022. First, a literature review was conducted to identify the potential data items to be included in the corrosive ingestion MDS. Then, a two-round Delphi survey was performed to attain an agreement among experts regarding the MDS content, and an additional Delphi step was used for confirming the final MDS by calculating the individual item content validity index (CVI) and content validity ratio (CVR) and by using other statistical tests. Results After the literature review, 285 data items were collected and sent to a two-round Delphi survey in the form of a questionnaire. In total, 75 experts participated in the Delphi stage, CVI, kappa, and CVR calculation. Finally, the MDS of the corrosive ingestion registry system was identified in two administrative and clinical sections with 21 and 152 data items, respectively. Conclusions The development of an MDS, as the first and most important step towards developing the corrosive ingestion registry, can become a standard basis for data collection, reporting, and analysis of corrosive ingestion. We hope this MDS will facilitate epidemiological surveys and assist policymakers by providing higher quality data capture to guide clinical practice and improve patient-centered outcomes.

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Section: Discussionmentioning

confidence: 99%

Developing the minimum data set of the corrosive ingestion registry system in Iran

Mahmoudvand

Yazdani

Shafiee

et al. 2022

BMC Health Serv Res

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“…Although our results provide a thorough overview of CKD care involving different stakeholders with an ePHR, its specific care requirements may not be generalizable to other nephrology settings. For example, our nephrology center was the pioneer in the design and implementation of a CKD registry in the country based on its care context [ 68 ]. Several universities have just started negotiations for this registry’s implementation.…”

Section: Discussionmentioning

confidence: 99%

Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease

Toni

Pirnejad

Makhdoomi

et al. 2021

BMC Med Inform Decis Mak

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Background To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient’s education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users’ needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use. Methods A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology. Results Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients’ conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use. Conclusions We focused on the ePHR’s content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients’ needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR’s adoption.

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“…On the other hand, manual data entry is timeconsuming and prone to documentation errors (such as inaccuracies and omissions). 25,26 Another important feature for any registry is the ability to interact with other health information systems that can be useful to prevent duplicate data entry 23,27 ; therefore, data coordination, uniform data definition, and uniform capture process of each item are of crucial importance. 28,29 In this review, the articles that described the COVID-19 electronic registry systems designed and launched in Iran were assessed.…”

Section: Discussionmentioning

confidence: 99%

COVID-19 Electronic Registry Systems in Iran: A Review

Mousavi‐Roknabadi

Safaei-Firouzabadi

Mousavi-Roknabadi

et al. 2021

Int J Travel Med Glob Health

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Introduction: Since the beginning of the COVID-19 epidemic in Iran, several electronic registration systems have been created to record the data of infected patients. This narrative review aimed to investigate the articles that described the COVID-19 electronic registry systems designed and implemented in Iran. Methods: In this review, four electronic databases [Medline (accessed from PubMed), Scopus, Science Direct, and Web of Science] were searched till June 22, 2020, using specific MeSH terms and related keywords in English language. Considering the titles and abstracts, unrelated studies were excluded. The full texts of the remained studies were evaluated by authors, independently. Then, their findings were assessed and reported. Results: Finally, four articles were enrolled, introducing four COVID-19 registries. These registries were designed and launched by Isfahan, Shiraz, Tehran, and Ilam Universities of Medical Sciences. They were different in design, the used algorithms for patients’ management, recorded data, and methods of quality assurance. Conclusion: Considering the differences between various registry systems designed for COVID-19 in Iran, it is recommended to develop a single web-based registry system by the Iran Ministry of Health and Medical Education to register and follow up the patients with COVID-19.

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Enabling informed policymaking for chronic kidney disease with a registry: Initiatory steps in Iran and the path forward

Cited by 6 publications

References 29 publications

Developing the minimum data set of the corrosive ingestion registry system in Iran

Developing the minimum data set of the corrosive ingestion registry system in Iran

Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease

COVID-19 Electronic Registry Systems in Iran: A Review

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