{"title":"The minimum data set of electronic personal health records for Alzheimer's disease using design science methodology","authors":"Parastoo Amiri , Zahra Niazkhani , Habibollah Pirnejad , Kambiz Bahaadinbeigy , Mahdie Shojaei Baghini","doi":"10.1016/j.hlpt.2023.100785","DOIUrl":null,"url":null,"abstract":"<div><h3>Objective</h3><p>Long-term management of healthcare information for chronic patients such as Alzheimer's is complex and tedious. An electronic Personal Health Record (ePHR) can help patients by maintaining a history of healthcare data from various centers. The purposes of this research were to develop a minimum data set (MDS) to design an ePHR for caregivers of patients with Alzheimer's disease (AD) using design science methodology and to identify the necessary measures for a smooth ePHR implementation in Iran.</p></div><div><h3>Methods</h3><p>This study was performed in Kerman from February 2020 to October 2021. To inform caregivers about ePHRs, information sessions were held and a pictorial method was used. Then, 20 semi-structured interviews were conducted with seven physicians and 13 caregivers involved in the care of Alzheimer's patients. Using thematic analysis based on the Information System Research (ISR) framework, the data were encoded and analyzed.</p></div><div><h3>Results</h3><p>The MDS of an ePHR for AD contained 178 data elements, categorized into six main sections. The participants considered the use of an ePHR essential to achieve quality care. Using an ePHR can serve as the main method of collecting accurate histories of each Alzheimer's patient in different disease stages and monitoring their behavioral changes. Data confidentiality and security were considered as one of the main measures for AD ePHR implementation.</p></div><div><h3>Conclusion</h3><p>This study identified an AD-specific MDS, as the first major step in launching ePHRs for Alzheimer's patients in the future. The MDS was developed based on the requirements of neurologists and caregivers.</p></div>","PeriodicalId":48672,"journal":{"name":"Health Policy and Technology","volume":null,"pages":null},"PeriodicalIF":3.4000,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Policy and Technology","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2211883723000618","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Objective
Long-term management of healthcare information for chronic patients such as Alzheimer's is complex and tedious. An electronic Personal Health Record (ePHR) can help patients by maintaining a history of healthcare data from various centers. The purposes of this research were to develop a minimum data set (MDS) to design an ePHR for caregivers of patients with Alzheimer's disease (AD) using design science methodology and to identify the necessary measures for a smooth ePHR implementation in Iran.
Methods
This study was performed in Kerman from February 2020 to October 2021. To inform caregivers about ePHRs, information sessions were held and a pictorial method was used. Then, 20 semi-structured interviews were conducted with seven physicians and 13 caregivers involved in the care of Alzheimer's patients. Using thematic analysis based on the Information System Research (ISR) framework, the data were encoded and analyzed.
Results
The MDS of an ePHR for AD contained 178 data elements, categorized into six main sections. The participants considered the use of an ePHR essential to achieve quality care. Using an ePHR can serve as the main method of collecting accurate histories of each Alzheimer's patient in different disease stages and monitoring their behavioral changes. Data confidentiality and security were considered as one of the main measures for AD ePHR implementation.
Conclusion
This study identified an AD-specific MDS, as the first major step in launching ePHRs for Alzheimer's patients in the future. The MDS was developed based on the requirements of neurologists and caregivers.
期刊介绍：
Health Policy and Technology (HPT), is the official journal of the Fellowship of Postgraduate Medicine (FPM), a cross-disciplinary journal, which focuses on past, present and future health policy and the role of technology in clinical and non-clinical national and international health environments.
HPT provides a further excellent way for the FPM to continue to make important national and international contributions to development of policy and practice within medicine and related disciplines. The aim of HPT is to publish relevant, timely and accessible articles and commentaries to support policy-makers, health professionals, health technology providers, patient groups and academia interested in health policy and technology.
Topics covered by HPT will include:
- Health technology, including drug discovery, diagnostics, medicines, devices, therapeutic delivery and eHealth systems
- Cross-national comparisons on health policy using evidence-based approaches
- National studies on health policy to determine the outcomes of technology-driven initiatives
- Cross-border eHealth including health tourism
- The digital divide in mobility, access and affordability of healthcare
- Health technology assessment (HTA) methods and tools for evaluating the effectiveness of clinical and non-clinical health technologies
- Health and eHealth indicators and benchmarks (measure/metrics) for understanding the adoption and diffusion of health technologies
- Health and eHealth models and frameworks to support policy-makers and other stakeholders in decision-making
- Stakeholder engagement with health technologies (clinical and patient/citizen buy-in)
- Regulation and health economics
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