Patients’ Online Access to Their Primary Care Electronic Health Records and Linked Online Services: Implications for Research and Practice

Mold, Freda; Lusignan, Simon de

doi:10.3390/jpm5040452

Cited by 31 publications

(27 citation statements)

References 117 publications

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“…In addition, Table 3 reveals that respondents with certain conditions, such as cancer or a psychiatric condition, belong to the more frequent users. The highest rated reasons for using Journalen among respondents (getting an overview, follow up on visits, and becoming more involved in the care process) correspond with results from earlier interviews with patients in Sweden [ 22 ], as well as studies from other countries [ 11 , 30 , 31 ]. It is clear that searching for errors in the record is not the main reason to use the service and that most patients who answered the survey have not been worried of something they have read in Journalen ; this is also in line with earlier findings [ 22 ].…”

Section: Discussionsupporting

confidence: 74%

“…Blue Button is a similar initiative by the United States Department of Veteran Affairs, which enables Veteran Affairs patients to access data from their EHR through Web, such as clinical notes, Veteran Affairs appointments, test results, etc [ 4 , 5 ]. Similar schemes have been initiated in Australia [ 6 ], Finland [ 7 ], Canada [ 8 ], Denmark [ 9 ], Estonia [ 10 ], the United Kingdom [ 11 ], and Sweden [ 12 ]. However, different strategies and approaches have affected the uptake and impact.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Moll¹,

Rexhepi²,

Cajander³

et al. 2018

J Med Internet Res

145

178

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BackgroundInternationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.ObjectiveThe objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.MethodsA national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.ResultsOverall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.ConclusionsIn this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

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Section: Discussionsupporting

confidence: 74%

Section: Introductionmentioning

confidence: 99%

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Moll¹,

Rexhepi²,

Cajander³

et al. 2018

J Med Internet Res

145

178

View full text Add to dashboard Cite

show abstract

“…Similarly, a large data sharing database linking GP records with hospital data by the British National Health Service (NHS) was terminated due to lack of public confidence [26]. It does not appear to be a coincidence that public concerns on privacy coincide with patients' increasing access to their own medical data [27]. In response to these concerns, Healthdata.be requires that all clinical registries or trials that wish to use its platform, receive approval from the National Privacy Commission's Sector Committee for eHealth.…”

Section: Discussionmentioning

confidence: 99%

Health Data for Research Through a Nationwide Privacy-Proof System in Belgium: Design and Implementation (Preprint)

Delvaux¹,

Aertgeerts²,

Bussel³

et al. 2018

Preprint

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BACKGROUND Health data collected during routine care have important potential for reuse for other purposes, especially as part of a learning health system to advance the quality of care. Many sources of bias have been identified through the lifecycle of health data that could compromise the scientific integrity of these data. New data protection legislation requires research facilities to improve safety measures and, thus, ensure privacy. OBJECTIVE This study aims to address the question on how health data can be transferred from various sources and using multiple systems to a centralized platform, called Healthdata.be, while ensuring the accuracy, validity, safety, and privacy. In addition, the study demonstrates how these processes can be used in various research designs relevant for learning health systems. METHODS The Healthdata.be platform urges uniformity of the data registration at the primary source through the use of detailed clinical models. Data retrieval and transfer are organized through end-to-end encrypted electronic health channels, and data are encoded using token keys. In addition, patient identifiers are pseudonymized so that health data from the same patient collected across various sources can still be linked without compromising the deidentification. RESULTS The Healthdata.be platform currently collects data for >150 clinical registries in Belgium. We demonstrated how the data collection for the Belgian primary care morbidity register INTEGO is organized and how the Healthdata.be platform can be used for a cluster randomized trial. CONCLUSIONS Collecting health data in various sources and linking these data to a single patient is a promising feature that can potentially address important concerns on the validity and quality of health data. Safe methods of data transfer without compromising privacy are capable of transporting these data from the primary data provider or clinician to a research facility. More research is required to demonstrate that these methods improve the quality of data collection, allowing researchers to rely on electronic health records as a valid source for scientific data.

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“…The project started in 2010 and has since spread throughout the US [3]. Similar schemes have been initiated in Australia [4], Finland [5], Canada [6], Denmark [7], Estonia [8], UK [9], and in Sweden [10]. However different strategies and approaches affect uptake and impact.…”

Section: Introductionmentioning

confidence: 99%

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden (Preprint)

Moll¹,

Rexhepi²,

Cajander³

et al. 2017

Preprint

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Background: In 2012, Region Uppsala was the first county council in Sweden to introduce patient accessible electronic health records (PAEHRs). By summer 2016 all but four out of 21 county councils had given citizens the possibility to access their medical information online. Numerous studies on the effect of PAEHRs on the work environment of healthcare professionals have been carried out, but up until now no extensive studies have been carried out regarding the patient's experiences with using PAEHRs. Objective: The aim of the study was to investigate patients' experiences of accessing their online electronic health records through the Swedish national patient portal. In this paper, the focus is on describing user characteristics, usage, and attitudes towards the system. Methods: A national patient survey was designed, based on an earlier interview and survey studies with patients and healthcare professionals. Data was collected during a five months period, June-October 2016. The survey was made available online on the login page to the patient accessible electronic health record system (Journalen) in Sweden. Patients from all county councils in Sweden could reach the survey. Results: 2587 users answered the survey. Two participants were excluded from the analysis, since they had only received care in a county council which did not yet show any information in Journalen. The results show that the majority of the users are women (67%) and there is a clear indication that a large amount of the users work or have worked within healthcare. Most users use Journalen infrequently (72%) and the main reason for use is to get an overview of one's health status. Furthermore, lab results was shown to be the most important type of information to have access to. The majority of the respondents (69%) want access to new information within a day. A vast majority of the users are positive towards Journalen; 87% strongly agree and 8% agree to the statement "Getting access to Journalen is good for me". Conclusions:The respondents provide several important reasons for why they use Journalen and why it is important for them to be able to access information in this way -several relate to patient empowerment, involvement, and security. Also considering the overall positive attitude, we can conclude that Journalen -and most probably other similar systems as well -fill important needs for patients. It is clear that patients appreciate the possibilities that Journalen gives.

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Patients’ Online Access to Their Primary Care Electronic Health Records and Linked Online Services: Implications for Research and Practice

Cited by 31 publications

References 117 publications

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Health Data for Research Through a Nationwide Privacy-Proof System in Belgium: Design and Implementation (Preprint)

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden (Preprint)

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