An adventure will soon end…

or is this the start of something new?

I’ve now spent almost a whole year with the OpenNotes research group at Beth Israel Deaconess Medical Center in Boston. We had only planned for 6 months, but plans are made to be changed, and we decided to stay until the end of June instead.

Needless to say, the last 3 months were not exactly what we had hoped for… but what a learning experience. The children are now not only fluent in English, they are also fluent in Canvas, google classroom, online meetings and sharing documents online. I have learned that sometimes things cannot be controled, and you have to adapt to uncertainty. And we have learned as a family that yes, we can spend almost 24 hours a day in a small apartment for 3 months without killing each other. Which is a good thing to know I guess.

the OpenNotes coffee mug

It has also been a very productive year for me as a researcher. The main goal I had when coming here was to establish a more long-term collaboration with the OpenNotes team and to build a foundation that would enable an international platform for research around patients access to their electronic health records – or open notes. In the past two weeks, we have learned that we have been granted two major funding proposals that will enable us to do just this!

Therefore, although this time next week we will be on the train to Newark airport (an adventure in itself) I am very confident that this is not only the end of my stay here in Boston, but the start of something new and very exhiting!

A new adventure begins

It’s time to shake some life into this blog again. Why? After almost 2 years of silence? Well. The past two years have had their fair share of ups and downs, and life has simply been moving too fast for me to keep the blog active. I’ve left my job at Karolinska Institutet after 10 years, and returned to my roots at Uppsala University where I now hold a position as Senior Lecturer in implementation science. Exciting!

Even more exciting is the adventure I’m embarking on today. At 10.30, the taxi will pick up me and the family and take us on the first stretch of our journey overseas to Boston where I will be a visiting scientist for 6 months! I will join the OpenNotes research team at Beth Israel Deaconess Medical Center (BIDMC) and Harvard Medical School. This is of course related to my own work within the DOME consortium in Sweden and the research project PACESS in which we evaluate the effects of implementing patients online access to their electronic health records in Sweden. I will tell you more about the work I will be doing there in due time, and of course about all things related to moving a family to the other side of the world… but now, I have to finish packing the last bags. Wish me luck!

Burden of interacting with healthcare

Today I was at the MYiHealth conference in Stockholm. I gave a workshop together with Sara Riggare and Eskil Degsell and the topic was Digital Patients leading development of healthcare. We had a great time, and the discussions in our workshop was very inspiring.

I of course listened to many other interesting presentations, e.g. a fascinating discussion about Integrating genomics, proteomics and patient data input data between Jamie Heywood, CEO PatientLikeMe &  Mathias Uhlén, professor, KTH. The discussion focused on how much we can learn from mapping the human genome and proteom and how this can in the future be used not only to understand and diagnose illnesses, but also to target treatments to the individual – so called precision medicine. I’m in awe of what is done by these researchers and patient activists to advance our knowledge.

But I also sat there thinking about my father and the pain of loosing him much too soon to that awful kidney cancer tumour that spread through his whole body and killed him slowly and painfully. I thought of how great it could have been if his illness had been discovered earlier – something that may be possible in the future. And if the tumour had been discovered earlier, it would have been fantastic if targeted treatments could have been used to maximise his survival chances and minimize his pain. I really hope that this will be the case in a not too far off future.

In the mean time, I also wish we could use some of the brilliance, funding and enthusiasm to ensure that we support the patients that are here today, struggling today, dying today. It may not be fascinating rocket science, but there is so much we can do with eHealth to lighten the burden of trying to interact with healthcare. eHealth will never take away the profound pain and trauma of watching a loved one die slowly and painfully from cancer. But at least we should be able to ensure that the day-to-day communication with healthcare during such times does not add to the burden.

I have a few simple things on my wish list;

• No more anxious wait at the mail box (yes, the physical outdoor mail box) for days to find out when your next appointment is
• No more searching for contact information for healthcare units responsible for doing the next set of diagnostic examinations (or wondering what the next step is and who is involved)
• No more chasing referrals
• No more hovering over the telephone waiting for that important phonecall, since if you miss it you have no way of calling back but may have to wait another 24 painful hours
• No more anxiety wondering if two (or three or five) different care providers have communicated with each other so that everyone are aware of the latest news
• No more feeling lost in a healthcare system that is not built to ease the journey of patients and their families

It’s not rocket science or big data or artificial intelligence. It may not have a measurable impact on health outcomes or survival rates. But I’m certain it could lift a many unnecessary burdens from the shoulders of patients and their families. And I know we can fix this. So what are we waiting for?

Patients’ online access to Electronic Health Records – current status and experiences from the implementation in Sweden

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!

Medinfo 2017 – off to China!

In a couple of hours I’m heading to the airoport for a great adventure – almost three weeks in China culminating with the MedInfo conference in Hangzhou. My first mission at the conference will be to hold a workshop together with reserachers from Norway on Wednesday the 23rd of August.

The topic is of course related to my current research project PACESS and the DOME research consortium, but is focusing on approaches and methods to evaluate the implementation and use of patient accessible electronic health records (PAEHR).

The aim of this workshop is twofold;

To disseminate knowledge by presenting experiences from ongoing projects regarding development and deployment of e-health systems for citizens to access their patient information / health record (and similar e-health services) online.

To explore important factors to assess in evaluations of PAEHR, and discuss methods for capturing this information to ensure comparable results from international PAEHR projects.

The scientific objective of the workshop is to propose a first international framework for evaluating PAEHR based on experiences from current implementation and evaluation projects, as well as the expertise of the workshop participants and the discussions during the workshop.

Hopefully, we will be able to write a report or paper based on the results of the workshop, so stay tuned for more! Or join us if you happen to be in Hangzhou!

From Transparency to Collaboration

A couple of weeks ago, I finally had the time to sit down and write a reflection based on my participation in the Salzburg global seminar and my own experiences of using the the Swedish patient accessible electronic health record (PAEHR). I submitted it as an opinion piece to the BMJ, and on Friday it was published (find it here)! Since I (and everyone else in Sweden) was busy celebrating Midsummer I haven’t really had the time to share yet myself. But it’s a very nice feeling to see your name on the BMJ opinion front page. Please read, comment and share (if you like it).

I didn’t think an opinion piece would perhaps be worth the trouble – it doesn’t really give me the academic credit of my scientific publications – but I don’t think any of my previous publications have been shared on facebook or retweeted as many times! So beware, I might get a lot more opinionated in the future 🙂

Graduation!

It’s already been a few weeks now, but the 2nd of June we had the graduation ceremony for all international master students in Aula Medica at Karolinska Institutet. It’s always a very nice ceremony, but this year it was extra special for me. Since I’m now the programme director for the health informatics master programme, it’s my job to give a speach congratulating our graduates. I was surprisingly nervous about this. It’s such an important occasion in our students lives and I wanted to live up to their expectations. So I thought long and hard on what I wanted to say. Panicked. Asked for help. And finally decided to just go with what I want them to remember as they leave KI – why they are needed!

Dear Health Informatics graduates of 2017!

I am so very proud to see you all here today.

Two years ago, when we first met in Widerströmska huset, some of you were probably a bit nervous, wondering what you were getting yourselves into… what does it mean to be a health informatician? What will I be able to do with my degree?

I’d like to think that you have a somewhat clearer picture of what roles a health informatician can take today – but I bet some of you are still a little nervous. What happens next? And I want to reassure you – regardless of where you are heading as you leave us – you are needed!

Healthcare needs you – current and future health systems around the world (not just across the street at Nya Karolinska) are not sustainable anymore without eHealth.

Physicians, nurses, physiotherapists – all health and social care professionals – need you to design and implement eHealth that actually supports their daily work. eHealth should be Facilitating not Frustrating!

Industry needs you – vendors and developers of eHealth needs your insight into healthcare work processes, your knowledge of standards, information modeling, usability, project management and implementation.

Decision makers, managers and governing organizations need you to provide evidence on the impact and usefulness of eHealth interventions.

Finally, we patients need you. We family carers need you.  – we need flexible, usable and empowering eHealth tools to help us communicate, learn, navigate and manage not only our illnesses but also the complex and to be honest far from ideal healthcare systems.

So whether you aim to design, develop, implement, evaluate, research or educate – you are needed.

When you leave Karolinska Insitutet today, make sure you make a difference. Ok – you can take a couple of days (or weeks?) off to celebrate this important step in your life and career – but then I NEED you to take all the tools and knowledge and experience you have gained over the last two years – “your Health Informatics super powers” – and make sure that eHealth and health informatics of the future helps transform healthcare into a better, safer, more efficient and a little less frustrating place for all of us.

I challenge you to go out and make me even prouder than I am today!

Thank you!