Research Paper
Development a national minimum data set (MDS) of the information management system for disability in Iran

https://doi.org/10.1016/j.dhjo.2019.05.008Get rights and content

Abstract

Background

Disability management and policymaking require complete and valid data on disability.

Objective

Development of a minimum data set (MDS) of the information management system for disability in Iran.

Methods

This descriptive, cross-sectional study was performed in 2017. Data were collected from the documents of persons with disabilities data bank of the State Welfare Organization of Iran available at “payment.behzisti.net”, and data elements of the Ministry of Health and Medical Education (MOHME) resources, in addition to the Internet and library. A checklist was used for data collection. The Delphi technique was applied to reach a consensus about the data elements using a questionnaire. The content validity and reliability of the questionnaire were assessed by experts’ opinions and the test-retest method, respectively.

Results

An MDS of disability was developed including administrative and clinical categories with 130 and 345 data elements, respectively. Two hundred and thirty eight data elements were mandatory elements (administrative: 60, clinical: 178) and the rest were optional elements.

Conclusions

An MDS can be a starting point for standardizing the disability data. A minimum data set has the potential to standardize the data and overcome the problem of low-quality disability data in Iran through providing consistent, complete and uniform data elements. Thus, the use of this MDS is useful in determination of the level of disability and its benefits, and in policy-making and effective planning for providing persons with disabilities with more efficient and cost-effective services.

Section snippets

Objective

This study was conducted to develop a national MDS for disability to facilitate the development of a national EDR for Iran.

Methods

The disability MDS was developed in five steps. In the first step, data were collected from the people with disabilities data bank of the State Welfare Organization of Iran available at “payment.behzisti.net” and the data elements of the Iranian Ministry of Health and Medical Education (MOHME) sources such as the national electronic health records system (abbreviated as SEPAS in Persian) and the integrated health system (abbreviated as SIB in Persian). The sources were continuously reviewed at

Results

The MDS of disability was divided into an administrative category with eight sections and a clinical category with 10 sections. The total number of data elements for administrative and clinical categories were 133 and 355, respectively. After applying two rounds of the decision Delphi technique, the final data elements for administrative and clinical categories were 130 and 345, respectively (Table 1, Table 2), of which 238 were mandatory (administrative: 60 and clinical: 178) and the rest were

Discussion

According to a WHO report in 2018, over a billion people in the world suffer from at least one form of disability and this rate is increasing because of population aging and rises in chronic health conditions.27 According to the United Nations reports in 2015, the prevalence of disability in the Iranian population is estimated at 1.5% (1.9% in males versus 1.1% in females), and physical disorders (48.3%), mental disorders (25.8%), voice and speech disorders (10.1%), blindness (7.9%), and

Conclusions

This study showed lack of comprehensive and uniform data elements of disability in Iran. Therefore, a MDS was developed for disability in Iran as a starting point for standardizing the disability data and developing an EDR. A minimum data set has the potential to standardize the data and overcome the problem of low-quality disability data in Iran through providing consistent, complete and uniform data elements. Thus, this MDS is useful in determining of disability and benefits and in

Funding

This study was supported by Grant No. IUMS/SHMIS_1395/9311304009 from Vice Chancellor for Research and Technology of Iran University of Medical Sciences.

Competing interests

The authors declare that they have no competing interests.

Acknowledgments

The authors wish to thank the Vice Chancellor for Research and Technology of Iran University of Medical Sciences for supporting the project.

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