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!
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!
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.
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.
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:
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.
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!
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.
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!
Data for this study was collected years ago, but we just never had the time to sit down and analyze it properly until last year. But we somehow managed to squeeze it into the pandemic schedule at last, and now it’s published!
The data was collected through an oline survey which was accessible to everyone who logged into the Swedish patient accessible electronic health record (PAEHR) Journalen. The survey had lots of questions, and part of it was the 10 System Usability Scale (SUS) items. We had 2587 unique users complete the survey.
Questions in Swedish
I think that I would like to use this system frequently.
I think that I would like to use Journalen regularly
Jag tror att jag vill använda ”Journalen” regelbundet
I found the system unnecessarily complex.
I found Journalen unnecessarily complex
Jag anser att ”Journalen” är mer komplicerad än vad den behöver vara
I thought the system was easy to use.
I thought Journalen was easy to use
Jag anser att ”Journalen” är lätt att använda
I think that I would need the support of a technical person to be able to use this system.
I think that I would need the support of a technical person to be able to use Journalen
Jag tror att jag skulle behöva personlig teknisk support för att kunna använda ”Journalen”
I found the various functions in this system were well integrated.
I found the various functions in the system were well integrated
Jag anser att de olika funktionerna i ”Journalen” fungerar väl tillsammans
I thought there was too much inconsistency in this system.
I thought there was too much inconsistency in this system
Jag anser att det finns många delar i ”Journalen” som inte är konsekventa
I would imagine that most people would learn to use this system very quickly.
I would imagine that most people would learn to use Journalen very quickly
Jag tror att de flesta skulle kunna lära sig att använda ”Journalen” ganska snabbt
I found the system very cumbersome to use.
I found Journalen very cumbersome to use
Jag anser att ”Journalen” är besvärlig att använda
I felt very confident using the system.
I felt very confident using Journalen
Jag känner mig väldigt säker och trygg (på vad jag gör) när jag använder ”Journalen”
I needed to learn a lot of things before I could get going with this system.
I needed to learn a lot things before I could get going with Journalen
Jag behöver lära mig ganska mycket innan jag kan börja använda ”Journalen”
The SUS questions and our modifications
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. According to Bangor and colleagues’ thorough evaluation of the SUS, a system needs to score above 70 to be considered at least passable. Better systems will score in the high 70s to high 80s, and scores over 90 indicate a truly superior system.
Now, the SUS scale will give you an indication of how good or bad a system is, but it will not tell you much about what usability problems your users are actually struggling with. Therefore, we also asked the study participants to comment on the usability in a free-text answer. We are currently working on finalizing the analysis of these answers, and they are VERY interesting!
Maria Hägglund is an Associate Professor in Health Informatics at Uppsala MedTech Science and Innovation, Uppsala University, Sweden. She has a PhD in Medical Informatics and worked at Karolinska Institutet 2009-2019 before returning home to Uppsala.