The minimum data set of electronic personal health records for Alzheimer's disease using design science methodology

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.