What happens when the patient portal does NOT give full record access?

[This text is re-posted from the NORDeHEALTH project website]

We have recently published a new paper analyzing data from the Swedish 2016 survey to users of the Swedish patient accessible electronic health record (PAEHR) “Journalen”:

Hägglund M, Scandurra I. Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study JMIR Hum Factors 2022;9(2):e37192

A survey study was conducted to elicit opinions and experiences of patients using Journalen. Data were collected from June to October 2016. The questionnaire included a free-text question regarding the usability of the system, and the responses were analyzed using content analysis with a socio-technical framework as guidance when grouping identified usability issues.

2587 users of Journalen completed the survey. Of the 2587 respondents, 186 (7.19%) provided free-text comments on the usability questions. The analysis resulted in 19 categories, which could be grouped under 7 of the 8 dimensions in the socio-technical framework of Sittig and Singh [1]. The most frequently mentioned problems were related to regional access limitations, structure and navigation of the patient portal, and language and understanding.

Although the survey respondents, who were also end users of the PAEHR Journalen, were overall satisfied with its usability [2], they also experienced important challenges when accessing their records. Some quotes that really resonated with me are;

I would use Journalen more if the whole record was included. The fact that the psychiatric notes are not included makes me feel discriminated and fragmented as a person. Body and mind affect each other and somatic care needs to consider what happens in psychiatry and vice versa.

I wish the doctor took the initiative and discussed the information in the record with me. When I’m in the office with the physician my mind goes blank and it’s difficult to talk about everything you’d like to, you realize after, and it feels like the doctor only gets a fragmented view of who you are. To discuss or add to the record could perhaps give us both a more complete picture.

For all patients to be able to reap the benefits of record access, it is essential to understand both the usability challenges they encounter and, more broadly, how policies, regulations, and technical implementation decisions affect the usefulness of record access. The results presented in the paper are specific to the Swedish PAEHR Journalen but also provide important insights into how design and implementation of record access can be improved in any context. We plan to compare these results with the responses from the 2022 NORDeHEALTH survey, and are very excited to report back to you what we find (hopefully some of the problems from 2016 have been removed)!

[1] Sittig DF, Singh H. A new sociotechnical model for studying health information technology in complex adaptive healthcare systems. Qual Saf Health Care 2010 Oct;19 Suppl 3:i68-i74

[2] Hägglund M, Scandurra I. User evaluation of the Swedish patient accessible electronic health record: system usability scale. JMIR Hum Factors 2021 Jul 27;8(3):e24927

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Scoping review on patients access to mental health records

My PhD student Annika Bärkås shares first authorship for the first systematic scoping review study collating existing evidence about sharing EHRs or clinical notes with people treated for mental health conditions. It’s an excellent study, that I’m very proud to have co-authored!

The study aimed to map available evidence on patient accessible electronic health records in mental healthcare. Thirty-one scientific articles from the USA, Sweden, Norway, Netherlands, Canada, the UK, and Australia were included in the review. The study results indicate that patients were mostly positive, such as increased feelings of validation and a sense of control, while healthcare professionals frequently expressed a perceived burden and concerns. This is very similar to previous studies in general medical settings. This study also reports the experiences of care partners, such as family members and friends, and views of policy stakeholders and experts. There is a major research gap on the evidence of sharing EHRs or clinical notes with people affected by mental health conditions and further research is needed.

Within the NORDeHEALTH research project, and Annika’s PhD project, we plan to perform several studies related to patients access to their mental health records. NORDeHEALTH is an international project, and data will be collected in Sweden, Norway, Finland, and Estonia. Make sure to follow the project website for updates when we have new results to report!

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Recording from European Patient Forum 2021

BMJ session at the EPF Congress

I was very happy and proud to be invited by the BMJ to give an international overview of how patients’ are given online access to their health data (specifically the electronic health records). We had a great discussion, and the recording is now available!

If you have more examples of countries giving patients online access to their health records – please write in the comments!

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BMJ webbinar series

Tonight at 6 pm (Swedish time), I will the speaking in the fourth and last of a series of webinars organized by the BMJ on patients access to their health records. I will be giving an international overview and discuss some of the implementation challenges we have identified in research studies in Sweden and internationally.

Implementation Challenges when giving Patients Online Access to their Health Records

Don’t hesitate to sign up and listen! Register here.

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Plenary Session at the European Patient Forum Congress

In a few weeks time, I will deliver a Keynote speech as part of a Plenary Session organized by the BMJ at the EPF Congress. The session is scheduled for October 26th 13.00-14.00 CET.

Patients’ access, control and ownership of health data remains key topics to address to harness health data for better patients’ care. This plenary session will focus on discussing these three topics in terms of pros, cons, challenges and impact on patients’ lives. 

I’m very excited about this, I think it’s time we as patients in Europe demand equal rights when it comes to accessing our own health data from our healthcare providers. Of course, challenges and difficulties may be different in different countries, but from what I’ve seen over the years we are more similar than we think. The resistance to giving patients this access is almost identical across international settings, as are the benefits experienced by patients as they gain access.

For more information about the congress; please visit the conference website.

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Swedish patients’ access to their psychiatric notes

I’m very thrilled that my PhD student Annika Bärkås has published the first paper for her PhD thesis! For a thesis in our field in Sweden, it is expected to have at list 4 papers in your PhD thesis, and at least two of them should be published at the time of the PhD defense (2 can be in manuscript form or submitted). Annika was registered late last year, and needless to say, having a publication already is quite impressive! The paper is published open access and you can find it here:

Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden. Int J Environ Res Public Health. 2021 Aug 30; 18(17):9140. 

In this study, Annika researched how psychiatric records (and specifically the notes in them) are shared throughout Sweden. Giving patients online access to their records have been a long journey, but since 2018 all Swedish regions are sharing. Psychiatric records have however been controversial and in the early days only a few regions gave their patients online access to these records. Here we explore if this has changed and how patients today can access these records.

Overview of how psychiatric notes are shared in Sweden (from https://www.mdpi.com/1660-4601/18/17/9140/htm)

As you can see, 4 regions are still not sharing psychiatric records with patients, but according to the answers given to Annika in this study, the all plan to do so in the near future. We found this highly interesting, not the least considering the controversy remaining (within Sweden and internationally) regarding potential risks of sharing health records from psychiatric care with patients. This study does not give us much insight into the benefits or risks of this practice, but this will be further explored in Annika’s PhD thesis where she will (within the NORDeHEALTH project) explore both patient’s and healthcare professional’s experiences more in-depth.

So keep a look out for further results from Annika Bärkås in the near future!

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Academic tourism and World Heritages

Do you miss travelling to conferences? I do.

Of course I see the benefits of less travelling too – for environmental reasons not the least! We can meet online, it’s easier to squeeze into busy schedules, more people will have the opportunity to attend etc. But I still miss the travel experiences, this is often where colleagues becomes good friends.

Hangzou, China – Medinfo 2017

At times, it has also been possible to combine conference travel with family travel. Above are pictures from Hangzhou in China, where MedInfo 2017 took place. My family joined me on this trip and spent time exploring the West Lake – an amazing place.

The West Lake Cultural Landscape of Hangzhou is in fact a UNESCO World Heritage! Over the years, we have created a challenge to visit as many world heritage sites as possible. So far, I’ve visited 127 of 1154 – and I hope to visit many more. Pandemics and global warming will however continue to impact on our travel plans, but I cherish all the wonderful memories from around the world. For now, I will explore local wonders instead – but I do hope that we will be able to travel the world again in the future, in sustainable and responsible ways.

Until then, I will have to make do with adding “old” travel to my list. When UNESCO published their 2021 additions to the list, I was happy to see I had already visited a few; Nice (pure family vacation), the Porticoes of Bologna (for the wedding of a friend), and Bath (as part of the Great Spa Towns of Europe). Travel done continues to bring joy!

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