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]

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Academic writing report

Remember I challenged myself last week to increase my academic writing? So, how did this week go? Well, I was aiming to write 1000 words/day for 5 of the 6 days of the week, but would be happy with 500. Here are the numbers:

Date Blog Academic writing
2017-03-01 443 300
2017-03-02 342 100
2017-03-03 0 0
2017-03-04 171 1700
2017-03-05 557 3400

As you can see, I did a ridiculous amount of academic writing over the weekend. I just simply can’t seem to fit it into my work days… I will try to work on that this week. The past week was a bit special though. I had a deadline for a paper yesterday and I was not feeling well on Friday (haunted by some complications after a surgery I had a couple of weeks ago).

But overall, quite a good first week I would say! 5500 words written (not counting the blog posts). Way to go!

I ended up not submitting the paper with the deadline yesterday though… I’m not entirely happy with it, but it’s off to a flying start.

[post 5 in the #blogg100 challenge – still behind…]

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Pokémon Go and physical activity

Today I’m working against a deadline. I have an article that needs to be submitted tonight, and a pile of exams to grade. Despite this, the urge to Catch ‘Em All drove me (and the rest of the family out on a 1 hour walk before lunch.


Look out for the Spinarak! 

We had learnt online that there was a Girafarig nest not too far from our home, and since non of us had caught a Girafarig nest it was not difficult to convince the family to go for a walk (although the 10-yearold started complaining halfway there and wanted us to turn around).

Needless to say, we caught some Girafarigs before heading home, and we even made a detour to take over a gym and earn some gold coins. Now, a 1-hour walk on a sunny winter day may not sound so impressive to some of you, but for me and my family it is actually a great improvement. I have never been a very physically active person and neither is my husband – and not surprisingly our children seem to take after us. Being interested in behavioural change and new technology, I have used numerous health apps and activity trackers to try to increase my physcial activity, but none has managed to create sustainable effect – it remains a struggle to motivate myself. Pokémon Go however, I have continued to use since it’s launch in July 2016, and the competitive aspects (trying to find more pokémons than my husband) and the recurring special events keeps it fun! The agony of not being able to go for long walks when the next generation was released a few weaks ago due to having had surgery… I think that one of the most compelling things about Pokémon Go is that it is not at all aimed at being a health app – it’s just a good side effect. Margaret McCartney made similar reflections in her comment in BMJ [1];

Most health appsthat promote physical activity tend to get users who want to be healthy. Pokémon Go isn’t marketed as a health app, but players still end up doing a lot of walking. The possibilities for apps to make the streets an active, reclaimed playground in which to have interconnected fun are boundless. Increased physical activity is a tantalising side effect. [1]

Professor Enrico Coiera also commented on the Pokémon Go phenomenon in August last year, stating that “if we can believe what we are seeing, Pokemon GO is the world’s most effective, and most widespread, population weight loss intervention” [2]. I’m however not so sure about the weight loss part. So far, Pokémon Go has not managed to make me loose weight – but it has probably increased my daily activity which should have health benefits. Weight loss is such a complex issue, and simply “moving more” will probably not help many of us to loose weight. But perhaps even more importantly, Pokémon Go has created social interactions and common interests that stretches across generations. Even my mother has started playing (at 61), and one of the first things she discusses with her grandchildren when they meet is “Have you caught anything good?”.

[1] McCartney, Margaret. Game on for Pokémon Go BMJ : British Medical Journal (Online); London354 (Aug 9, 2016).

[2] Coiera, Enrico. GottaCureEmAll – Pokémon Go teaches healthcare a big lesson

[post 4 in the #blogg100 challenge – still behind…]


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