US policy requires immediate release of records to patients

Salmi, Liz; Blease, Charlotte; Hägglund, Maria; Walker, Jan; DesRoches, Catherine M.

doi:10.1136/bmj.n426

Cited by 44 publications

(35 citation statements)

References 6 publications

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“…Secondly, recognising the digital and data driven world we live in, we will advocate more strongly in support of a key principle: that healthcare systems should provide patients with real time online access to all their health information and data. In the US a new law has just mandated this, and evidence of the benefit it brings to both patients and health systems is growing 14. Access to personal health records, and their use to promote self-management and improve communication with health professionals, will entail clearing substantial cultural and educational hurdles as well as technological and organisational ones.…”

Section: Next Stepsmentioning

confidence: 99%

Healthcare decision making should be democratised

Richards¹,

Scowcroft²,

Doble³

et al. 2021

BMJ

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The covid-19 pandemic has precipitated radical changes in healthcare practices and highlighted outdated ways of working that are not fit for purpose in the digital age. It also stalled progress on shared decision making and patient and public involvement in healthcare. Early in the pandemic, well embedded structures for involvement were suddenly disrupted 1 at a time when the concerns of patients and the public could scarcely have been greater.

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Section: Next Stepsmentioning

confidence: 99%

Healthcare decision making should be democratised

Richards¹,

Scowcroft²,

Doble³

et al. 2021

BMJ

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“…The initiative started in 2010 and has since spread throughout the United States [ 10 ]. On April 5, 2021, a new federal rule required US health care providers to allow patients access to all the health information in their EHR [ 11 , 12 ]. This new rule mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, by request.…”

Section: Introductionmentioning

confidence: 99%

User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale

Hägglund¹,

Scandurra²

2021

JMIR Hum Factors

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Background Transparency is increasingly called for in health care, especially, when it comes to patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient accessible electronic health record (PAEHR), accessible online via the national patient portal. User characteristics and perceived benefits of using a PAEHR influence behavioral intention for use and adoption, but poor usability that increases the effort expectancy can have a negative impact. It is, therefore, of interest to explore how users of the PAEHR Journalen perceive its usability and usefulness. Objective The aim of this study was to explore how the users of the Swedish PAEHR experience the usability of the system and to identify differences in these experiences based on the level of transparency of the region. Methods A survey study was conducted to elicit opinions and experiences of patients using Journalen. The data were collected from June to October 2016. The questionnaire included questions regarding the usability of the system from the System Usability Scale (SUS). The SUS analysis was the focus of this paper. Analysis was performed on different levels: nationally looking at the whole data set and breaking it down by focusing on 2 different regions to explore differences in experienced usability based on the level of transparency. Results During the survey period, 423,141 users logged into Journalen, of which 2587 unique users completed the survey (response rate 0.61%). The total mean score for all respondents to the SUS items was 79.81 (SD 14.25), which corresponds to a system with good usability. To further explore whether the level of transparency in a region would affect the user’s experience of the usability of the system, we analyzed the 2 regions with the most respondents: Region Uppsala (the first to launch, with a high level of transparency), and Region Skåne (an early implementer, with a low level of transparency at the time of the survey). Of the participants who responded to at least 1 SUS statement, 520 stated that they had received care in Region Skåne, whereas 331 participants had received care in Region Uppsala. Uppsala’s mean SUS score was 80.71 (SD 13.41), compared with Skåne’s mean of 79.37 (SD 13.78). Conclusions The Swedish national PAEHR Journalen has a reasonably good usability (mean SUS score 79.81, SD 14.25); however, further research into more specific usability areas are needed to ensure usefulness and ease of use in the future. A somewhat higher SUS score for the region with high transparency compared with the region with low transparency could indicate a relationship between the perceived usability of a PAEHR and the level of transparency offered, but further research on the relationship between transparency and usability is required.

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“…Another potential solution to HCP resistance that was mentioned in both countries was enforcing stricter rules or regulations regarding the PAEHR. This is being done, e.g., in the USA, where from April 5, 2021, new federal laws will mandate that providers must extend open notes to all patients, with a few permitted exemptions ( 31 ). In Sweden, this could have reduced the inequality in access between regions and let the PAEHR Journalen meet citizens' preferences better.…”

Section: Discussionmentioning

confidence: 99%

Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records—A Comparative Study of Sweden and the Netherlands

Cijvat

Cornet

Hägglund

2021

Front. Public Health

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Background: Patient-accessible electronic health records (PAEHRs) and associated national policies have increasingly been set up over the past two decades. Still little is known about the most effective strategy for developing and implementing PAEHRs. There are many stakeholders to take into account, and previous research focuses on the viewpoints of patients and healthcare professionals. Many known barriers and challenges could be solved by involving end-users in the development and implementation process. This study therefore compares barriers and facilitators for PAEHR development and implementation, both general and specific for patient involvement, that were present in Sweden and the Netherlands.Methods: There were a total of 14 semi-structured interviews with 16 key informants from both countries, on which content analysis was performed. The Consolidated Framework for Implementation Research was used to guide both the construction of the interview guides and the content analysis.Outcomes: The main barriers present in both countries are resistance from healthcare professionals and technical barriers regarding electronic health record systems and vendors. Facilitators varied across the two contexts, where the national infrastructure and program management were highlighted as facilitators in Sweden and stakeholder engagement (including patients and healthcare professionals) was described as a facilitator in both contexts. Strong leadership was also described as a critical success factor, especially when faced with healthcare professional resistance.Conclusion: Most of the major barriers and facilitators from both countries are covered in existing literature. This study, however, identified factors that can be seen as more practical and that would not have arisen from interviews with patients or physicians. Recommendations for policymakers include keeping the mentioned barriers in mind from the start of development and paving the way for facilitators, mainly strict policies, learning from peer implementers, and patient involvement, when possible. Implementers should focus on strong decision-making and project management and on preparing the healthcare organization for the PAEHR.

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US policy requires immediate release of records to patients

Abstract: Patients and clinicians should embrace the opportunities

Cited by 44 publications

References 6 publications

Healthcare decision making should be democratised

Healthcare decision making should be democratised

User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale

Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records—A Comparative Study of Sweden and the Netherlands

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