In a couple of ours I will be presenting a paper I’ve written together with Isabella Scandurra to an audience at MedInfo2017, a big international Medical and Health Informatics conference. This year the conference is held in Hangzhou, China and it’s really been an adventure! But more on that another time.

I had hoped that the online proceedings would be published by now, but it seems we’ll have to wait another two months for that, so I’ll give you a brief summary of the paper here.

Aim

The purpose of this paper is to present the current state of the
nation-wide PAEHR implementation in Sweden, to describe
the challenges in the implementation, and finally to discuss the
need for patient-centered evaluation of PAEHRs as proposed
in the PACESS project.

Since we have been following the progress in Sweden over the years from different research projects, we thought it was about time to share some insights and to identify some of the main challenges. But first – a status report!

The national patient portal has both an open part where anyone can search for health and care related information, and a part with eHealth services that require log-in. In June 2017, 41,4% of the Swedish population had activated their accounts in the national portal. That’s over 4 million users. Not all these are using the patient accessible EHR which you access through the national patient portal though, but the PAEHR currently has over 1,2 million users and the number of users is continuously growing.

All 21 regions in Sweden use the national patient portal as their main contact point for patients, and the goal is that all will also provide the PAEHR eHealth service to their inhabitants. So far, 19 of the 21 regions are making EHR information accessible to patients through the PAEHR, and the last two regions are planning to join. In addition, private care providers are also making their EHRs accessible. As the PAEHR service is built on a national Health Information Exchange platform to which most EHR systems currently in use in Sweden are connected, as a patient you do not need to worry about which EHR system was used by which care provider – you have one access point.

So, we’ve come a long way in Sweden, but there are still major issues that needs to be resolved. Apart from the legal challenges, which needed to be overcome in order for the work to be possible at all, we identified the following obstacles;

• Agreeing on a national regulatory framework
• Fragmented views of healthcare data
• Local initiatives
  • Different PAEHR services
  • Poor coverage
  • Uneguitable information provision
  • Overview of information
• Resistance from healthcare professionals
• Long-term assessments are not prioritized
• Limited support for patient participation and collaboration

Conclusion

The Swedish path to a nationally available PAEHR has been long and challenging, and still we’re not quite there yet. Challenges that remain have to do with local differences in the implementation that lead to fragmentation and inequal access
to information. Initiatives have been taken to reconcile some of the problems, e.g. an updated national regulatiory framework for PAEHR, but further efforts are needed to evaluate the implementation from a patient perspective.

I will write more about each of the challenges we highlight in the paper later, but now I need to head to the conference!