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]

Posted in #blogg100, Patient experience, Social media | Leave a comment

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):

Journalen with circles

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
  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]

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Transparency and behavioral change

I’m exhausted after a long day of discussions and meetings and debate. Emotional, engaging and inspiring.

We started the day with a great presentation of the OpenNotes initative in the US made by Jan Walker. The experience they have made of introducing patients’ online access to the medical records are very similar to what we see in Sweden, both with respect to concerns from healthcare professionals and the positive response from patients. If you are interested in research done on this topic in Sweden, check out the DOME-consortium’s web site where we try to post most of our publications.

This was followed by some excellent presentations on the topic of motivation and behavioural change. The discussion then revolved around the topic of transparency and behavioural change. My reflection on this was that I don’t believe that patients’ access to their medical records will create sudden changes in notoriously difficult areas such as weight loss, smoking cessation, or risky alcohol consumption. The problem here is not that people lack the knowledge or information – and if we just provide them with it they will change. Rather, behavioural change requires a whole different set of tools, and I’m not even sure that healthcare is up to the task to help patients achieve those changes. But that is my personal opinion.

However, that does not mean transparency and patients’ access to their medical record online is not useful – but we have to consider what the goals are! If healthcare professionals expect that this will be an amazing tool for behavioural change, I’m afraid that they will disappointed – and perhaps consider it as a failure. Patients on the other hand, may consider completely different things the main benefits of their access. Patient safety is one of the areas that are obvious to me (I’ve written about that before), but I’ve also written about some of the unexpected uses I’ve found of having access to my record online, which includes remembering names, and knowing what was actually documented during the last visit, so I know what I may have to repeat next time.

For healthcare professionals, this may not seem like the great benefits they were expecting, but I believe it’s a starting point for a more equal and trustworthy relationship between patient and healthcare professional. And last but not least, I believe it is a democratic issue of having the right to access information that will very likely influence your life and health in the future.

[post 10 in the #blogg100 challenge]

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Travelling with nasaline

So this is the first time I have travelled with a bowl, a bag of salt and a “nose rinser”. But rinsing your sinuses with salt water 2 times/day were the doctors orders – and who am I to argue, right? 

And now that the infection is gone, the yuck-factor of the rinsing has decreased significantly. Although I must say it was strangely satisfying rinsing all sorts of horrors out of my nose 🙂

[post 9 in the #blogg100 challenge – way behind again…]

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On respect and knowledge

So, I’ve spent my first afternoon at the Salzburg Global Seminar Session 553, at the beautiful Schloss Leopoldskron just outside Salzburg, Austria. In addition to listening to some interesting discussions and meeting a lot of amazing people, I have a head full of thoughts that I need to express.

My first thoughts after today’s discussion move around knowledge and respect – topics that was brought up repeatedly today.

With my health informatics students I talk about this a lot. They come from different backgrounds, some are clinicians (nurses, physicians, physiotherapists etc) and some have a technical background (IT-developers, designers, engineers), some have patient experience, others don’t. In addition, they come from all over the world. In the program, they get to work together from day 1 on different group work projects to explore problems and needs, design solutions and evaluate them. I try to imprint in the importance of recognizing the limits of their own knowledge and expertise, recognizing the importance of other peoples knowledge and expertise and staying curious at finding out what they do not know and learning to collaborate with those that possess the knowledge they lack.

Today we talked a lot about how patients have knowledge and expertise that healthcare professionals do not have, and how important it is for healthcare professionals to acknowledge this. Yet, I have a feeling that many still considered the knowledge possessed by healthcare professionals to be more or less unattainable by patients.

I’m certain we will continue to discuss this over the upcoming days, but I would like to state that sometimes patients or family carers know just as much or even more about an illness and it’s treatments than the healthcare professional they are facing. But this is where it often goes wrong – this is where problems arise. It is very clearly presented in the excellent publication by Rosamund Snow et al: What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study

“Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients’ ability to continue effective self-management.”

“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.” [1]

As long as patients stick to knowing their own “patient experience type knowledge”, it’s ok – but if you suggest that you know more about the diagnosis and/or treatment than the professionals – then you question the power balance and hierarchy healthcare is built upon.

I am looking very much forward to continuing to discuss this over the next 5 days. Stay tuned for more!

[1] Snow R, Humphrey C, Sandall J. What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study 

[post 8 in the #blogg100 challenge – way behind again…]

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MobEVAL meet HäPP

Yesterday I dared to battle the Swedish weather and went on slippery roads to Norrtälje together with Magnus Peterson. It’s not the first time, and will not be the last as we are now proud supervisors of Lovisa Jäderlund Hagstedt who was recently registered as a PhD student at the Health Informatics Centre. Lovisa’s “day job” is as a primary care physician in Norrtälje, and her research will focus on how mobile IT-solutions are used in homecare today, and what impact the introduction of new mobile IT-solutions will have. We refer to this research project as MobEVAL, and we hope that it will grow with more collaborations both within Sweden and internationally.

The electronic health record (EHR) Hälsa på plats (HäPP) is a mobile application for home care, that makes it possible to access the electronic health record by using a tablet, through the health innovation platform (HIP), thus enabling reading and writing health records on the tablet while on home visits. The application was developed in cooperation between the academic medical center in primary care (AVC) Norrtälje TioHundra AB, Innovationslussen in Stockholm County Counsil (SLL), Apple Sweden and Chorus AB. And now we get to evaluate it!

I will of course report further about our results as we move forward in the project.

[post 7 in the #blogg100 challenge]

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Salzburg Global Seminar

I am so excited it’s almost a little ridiculous. I’ve been invited to join session 553 at the Salzburg Global Seminar! The session is called Toward a Shared Culture of Health:Enriching and Charting the Patient-Clinician Relationship, and some of the most prominent researchers and activists in my field will be there. If you are not familiar with the Salzburg Global Seminar, you can read more about them online, but here’s their mission: 

The mission of Salzburg Global Seminar is to challenge current and future leaders to solve issues of global concern.

To do this we design, facilitate and host international strategic convening and multi-year programs to tackle systems challenges critical for the next generation.

Originally founded in 1947 to encourage the revival of intellectual dialogue in post-war Europe, we are a game-changing catalyst for global engagement on critical issues in education, health, environment, economics, governance, peace-building and more.

We work with carefully chosen partners to drive social change in the areas of imagination, sustainability, and justice.

Salzburg Global connects the most talented people and the most innovative ideas, challenging governments, institutions and individuals at all stages of development and all sectors to rethink their relationships and identify shared interests and goals. (

The session I will be attending begins already on Friday, and will last for five whole days. The schedule is intense, and I’m so looking forward to every minute of it. Key questions that will be adressed during the session are:

  • If fully transparent communication becomes a foundation for the future patient-clinician relationship, how will medical practice evolve?
  • Can open medical records become central vehicles for engaging individuals actively in maintaining and restoring health, and in managing illness?
  • How may such change in practice enhance equity and transform care, particularly for those at the lower end of the socio-economic gradient, among ageing populations and those with chronic or serious advancing illness?
  • How can patients and families contribute to their care in ways that help clinicians to manage larger populations of patients effectively
  • How might patient safety and the processes, outcomes and costs of care improve?
  • How may fully transparent communication help informal caregivers whose family members and loved ones are increasingly dependent on their care?
  • How might transparency and co-creation of medical records help people become better stewards of their own health outside the clinical setting?
  • How might greater transparency promote community engagement in designing systems to deliver care both needed and wanted?

Spot on, right? These are exactly the type of questions we are addressing in the DOME consortium, in my new research project PACESS, and precisely what I have been pondering as I’ve navigated healthcare myself as both a patient and a family member over the last years. I’m looking forward to engaging and inspiring discussions, to shared experiences of doing similar research and development work from all over the world, to new tools and arguments that I can bring with me back home, and hopefully to fruitful future collaborations!

So, starting Friday, expect reflections both here on the blog, on twitter and perhaps some pictures on Instagram. The fact that the seminar resides at Schloss Leopoldskron in Salzburg is of course just a bonus – but one I will thoroughly enjoy.

[post 6 in the #blogg100 challenge]

Posted in #blogg100, academic life, Consumer Health Informatics, Events | Tagged , , , | 1 Comment