Abstract
Delivery of integrated care (IC) depends on accessing relevant patient information. The goal is for information to follow patient journeys, i.e., "one citizen - one health record". Today electronic solutions mirror the care silos they belong to. As a result, healthcare data is scattered across organizations and Electronic Health Record (EHR) systems. Thus, to create an overview of the patient journey across silos, EHR data from all relevant silos must be collected.
Aim: To describe the process of requesting, obtaining and transforming EHR data from many sources into one unified digital format. (“DigiTeam”).
Methods: This descriptive study, report on work from the research project Dignity care (
https://ehealthresearch.no/en/projects/dignity-care). The project acquired the consent from 10 patient partners with complex care needs to access and use their EHR data. They exercised their legal right to request a copy of their medical record from general practitioner(s) (GP), hospital(s) and home-nursing services. We report on the resulting process.
Results: The year-long process of obtaining Electronic Health Record (EHR) data faced numerous obstacles. Patients used various means such as the national patient portal, hospital websites, and direct contact to request EHR-copies from 28 healthcare providers. Seven patients successfully obtained data from all providers, while two received no response, and one was informed of data deletion. Data from 11 hospitals came in PDF format, while collaboration with IT staff enabled digital data transfer for five patients from one hospital. Eleven GPs provided paper copies, three had to be reminded several times. Two GPs struggled with secure digital formats, ultimately providing paper copies. GP data only covered the current GP, not previous ones, even if data from the previous GP had been transferred to them. Three patients received GP data on a memory stick. Among four patients with home care service, one received paper printouts, and three received PDF files.
None of the service providers used the current recommended standard HL7 FHIR for data export, nor did they have any other reusable digital format in place. The paper printout was scanned on an encrypted scanner with optical character recognition (OCR) into large machine-readable PDFs, which were converted to searchable text files. Each entry was then identified and copied to a separate text file and coded with meta-data (type of document, time and author). This was then imported into the demonstrator EHR module.
Conclusion: This study underscores the resource-intensive nature of accessing and transforming EHR data into one unified presentation due to the absence of standardized digital export solutions among service providers.
Research projects on IC that wish to utilise EHR data from many providers must allocate much time and resources but might still not get all the data. This is a good illustration of some complexities of reaching the goal of “one citizen one journal” and easy access to all relevant EHR data.