In October 2012 I wrote a blog post about why I wanted to read my own electronic health records. In this post, I will try to give a very brief summary of what has happened since then when it comes to the introduction of patients’ online access to their electronic health records (EHRs) in Sweden.
In November 2012 all residents in the county council of Uppsala, where I happen to live, was given access to their EHR online through the e-service Journalen. Uppsala was truly a pioneer in this work in Sweden and really pushed the boundaries for giving patients’ full access to their health records [1]. Myself, I was in Thailand on vacation when the system was launched and I wrote this when I got home:
It finally happened! Last week the county council in Uppsala (the Swedish county I live in) made it possible for all residents in Uppsala to access their electronic health records online. I was on holiday in Thailand but couldn’t resist the temptation, and since I had my laptop with my e-legitimation installed with me I used the hotels WiFi to log-in and have a first look. Despite a warm ocean and palm trees waiting I had a hard time logging off.
Since then, I have myself been involved in the project “Mina Vårdflöden”, which ran in parallel with the work in Uppsala, developing e-services to give patients access to their health related data. Here the scope was somewhat different, much focus was put on building up an infrastructure to enable access to data from different source systems (i.e. different EHRs) [2], while also addressing the needs of different patient groups with respect to e-services [3], [4]. The two projects have been running in parallel for a few years, and as the committment to provide patients with online access to their EHR grew throughout Sweden, different care providers decided to adopt one of the two solutions. As the infrastructure developed within “Mina vårdflöden” was adopted nationally, the Uppsala e-service was migrated to this platform, making it possible to provide access to all EHRs connected to the national eHealth platform. This turn of events created a situation where “Journalen” – the e-service developed in Uppsala, and “Vårdhändelser” – the e-service developed in Stockholm within “Mina vårdflöden”, provided similar functionality with access to the same data (at least in theory). Some providers chose Journalen, others Vårdhändelser, and it was becoming hard to justify both the expenses of developing and maintaining two such national eHealth services and the fragmented view towards the patients who were recommended a different e-service depending on which care provider they visited. Now, February 2016, the battle between the e-services is officially over, as the e-service “Vårdhändelser” is discontinued and the decision has been made to introduce “Journalen” in all county councils.
Having worked for quite some time with the “Vårdhändelser”-service myself, it was not without sadness I was reached by the news. But as a user of “Journalen”, I can also conclude that some healthy competition has done wonders for the development of the service, which has improved greatly since it was first launched. I also believe that the competition actually sped up the development and implementation of the national eHealth infrastructure and the e-services as more and more county councils decided to connect and give their citizens access to their EHRs. Currently 9 county councils are providing access, and according to Inera’s plan all counties will be online by the end of 2017. Exctiting times to be a researcher in health informatics, and a patient in Sweden!
[1] Hägglund M, Koch S. Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care BMJ 2015;350:h359
[2] Lundberg N, Koch S, Hägglund M, Bolin P, Davoody N, Eltes J, Jarlman O, Perlich A, Vimarlund V, Winsnes C. My Care Pathways – creating open innovation in healthcare. Stud Health Technol Inform. 2013;192:687-91
[3] Hägglund M, Bolin P, Koch S. Living with Lung Cancer – Patients’ Experiences as Input eHealth Service Design. Stud Health Technol Inform. 2015;216, 391-395
[4] Hägglund M, Bolin P, Koch S. Experiences as input to eHealth design-a hip surgery patient journey case. Stud Health Technol Inform. 2015;210, 672-674
[post 1 in the #blogg100 challenge]
Participatory eHealth 
Where do we find out medical records…will this include all past medical history? Please tell where we can find this online…
You access your electronic health records through the site 1177.se – there’s a login-button in the top right corner. If you do not already have an account you create one. You need to have a bankID in order to log in, same as you use when you e.g. do your tax returns. If you don’t have one, you can usually get one through your bank.
Once you’ve logged in to 1177, you will find different e-services – you can book appointments, renew prescriptions etc. You can read more here: https://www.1177.se/Stockholm/Tema/E-tjanster/ Each county council have their own information site – this link goes to Stockholm, but it’s easy to choose a different one at 1177.se
So, when you are logged in – there’s a menu to the right of the screen called “övriga tjänster” and under it you find “journaltjänster”. Currently there’s two services listed there “Journalen” and “Vårdhändelser” – most likely you will find information in Journalen. The problem is that depending on WHERE in Sweden you have received care, you may or may not have access to your record yet (the plan is for all of Sweden to have access by the end of 2017), and depending on where you live you may also have access to past medical history or not. In Uppsala, we have access to records from 2005 (or is it 2006?) and onwards, but in many other county councils the decision has been made to give access only to records from the date they went online and forward in time.
So, my recommendation is set up an account in 1177, log in and see if you have access to your records and if so for what time period. If you want to, you can also find information in Journalen about what areas of Sweden are connected, and which information they give access to.
We still have some way to go before we have easy to access and fully accessible records all over Sweden, but at least it’s a start. I hope you find the information you’re looking for!