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?

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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!

 

How open are you?

A article with the title Whom Do You Tell When You’re Sick? Maybe Everyone You Know in the New York Times stirred up a little discussion when shared in my Facebook flow the other day.

One of the comments made by person sharing the article was that is was surprising that going public [with your disease] gives patients a sense of control over their lives at a time of often intense helplessness. Quickly a whole group of e-patients responded that this was not surprising at all – and I personally agree.

I’m known among my friends as a bit of an oversharer I think, sharing e.g. pictures of my nose before and after having a huge nasal polyp surgically removed from it, not to mention rather graphic stories of the procedure and the pains leading up to it. This is part of my way of handling this situation.

My reflection when reading the facebook post was that there are many degrees and aspects of sharing that needs to be considered. I’m a very open person, but whether I choose to share or not depends on the level of seriousness, who else is involved, where I am in time in relation to the illness/event, how scary it is etc. I realize that I tend not to share my depest, darkest fears in relation to the illness – but sharing practical details I have less of a problem with. Either way, I believe that the choices I make continuously in sharing (a new choice for every post I write) adds to my sense of control. The insecurity we face in illness is one of the most disempowering and frightening feelings I know – and any means to battle this and regain a sense of control (whether it is real or not) is positive. The key words here being control and choice.

When other people make choices regarding information sharing and openness for me, it takes away my sense of control. That is why I cringed a little in yesterdays session here at the Salzburg Global Seminar when the question was raised whether I would choose to link my facebook and other social media to my electronic health record so that others could analyse it and learn from it. I realize that my sense of control over what I post in social media is naïve and that this information is already analysed and used in all sorts of ways that I cannot predict – but still… Making a one time choice (in a quite vulnerable situation – when seeking help at a hospital) to connect every post I’ve ever written to all the information I have in my medical record? I wouldn’t mind being able to link the posts I choose from my facebook/instagram/blog/twitter to my EHR though – that would be excellent!

Anyway – what I wanted to say was that openness and sharing of my personal health information is not a on/off button. It’s a choice that I make everyday, and sometimes I choose not to share, or where and with whom to share. I may possibly regret later on sharing certain information, but that is a risk I take into consideration every time. How do you share?

[post 12 in the #blogg100 challenge]

Demo environment of Swedish patients’ EHR access

So, today I’ve been showing my own online access to my electronic health record (EHR) to lots of people from all around the world. I was asked if there’s a way to see the e-service “Journalen” even if you don’t have a Swedish log-in to the patient portal. And of course there is. There’s an open demo environment at the Inera website, and here’s a little instruction in English…

Unfortunately most of the information at Inera’s website is in Swedish, but there is a lot of interesting data available there on e.g. the national regulatory framework, what information different regions give access to and statistics about current use of the national eHealth services.

You find the demo environment here “Journalens demonstrationsmiljö”. You do not have to log in using your BankID (as in the real environment). Instead you have a list of test users to choose from. You can of course explore all of them, but I recommend Frida Kransstegen as she has most data in her EHR. As this is a demo environment, not all data is clinically relevant or correct, but you will at least be able to test the designs and functionality.

This is the view you will see after choosing a user (without the red circles of course):

The 4 circles in the picture above represents the four main menus or functional areas you have access to.

1. This is mainly administrative functions, except for “Journalen” which actually shows you the medical record (same as if you click on any of the functions in menu 2). In menu 1 you can e.g. see log reports, update your personal information (address, contact info etc), and find out more about the e-service Journalen.
2. This is the main functions or information types you have access to within Journalen. Whenever you click on one of the functions in this menu, a sub-menu will open up in menu 1 (under Journalen) showing the same alternatives, so that you can move between them without returning to the start page.
3. Here you can see what information is shown by different regions. Since the national regulatory framework is still very weak, the different regions have made very different decisions about what information to show. Here you can find out more about what information can be expected in different parts of Sweden
4. Since you can also have access to e.g. your children’s medical records, you can here switch between different persons’ records.

Hope this helps if you’re interested!

[post 11 in the #blogg100 challenge]