Participatory eHealth

Do you miss travelling to conferences? I do.

Of course I see the benefits of less travelling too – for environmental reasons not the least! We can meet online, it’s easier to squeeze into busy schedules, more people will have the opportunity to attend etc. But I still miss the travel experiences, this is often where colleagues becomes good friends.

At times, it has also been possible to combine conference travel with family travel. Above are pictures from Hangzhou in China, where MedInfo 2017 took place. My family joined me on this trip and spent time exploring the West Lake – an amazing place.

The West Lake Cultural Landscape of Hangzhou is in fact a UNESCO World Heritage! Over the years, we have created a challenge to visit as many world heritage sites as possible. So far, I’ve visited 127 of 1154 – and I hope to visit many more. Pandemics and global warming will however continue to impact on our travel plans, but I cherish all the wonderful memories from around the world. For now, I will explore local wonders instead – but I do hope that we will be able to travel the world again in the future, in sustainable and responsible ways.

Until then, I will have to make do with adding “old” travel to my list. When UNESCO published their 2021 additions to the list, I was happy to see I had already visited a few; Nice (pure family vacation), the Porticoes of Bologna (for the wedding of a friend), and Bath (as part of the Great Spa Towns of Europe). Travel done continues to bring joy!

If it’s one thing I’m struggling with that has been even more difficult during the pandemic, it’s finding the balance between work and rest. As I’ve been working exclusively from home for the past year, this has been increasingly challenging. When there’s not much else to do – work has taken over most of my time. Even now, in the middle of summer, last week of my vacation – I can’t help but planning for activities starting up in August…

It doesn’t help of course when that long overdue paper finally gets accepted and you need to do proof reading within two days… and then again a week or so later. Or funding applications with deadlines. Or a thesis arriving in the mail that have agreed to review. But I’m also blessed with work that feels really rewarding and fun – I just don’t want it to take over EVERYTHING.

So, my plan for this week includes:

• baking a pie (or two)
• visiting my mother-in-law
• possibly take the kids to Furuvik
• cinema (just need to decide on which movie(s))
• long walks with the dog
• and a bit of online teaching + finalizing a paper… or two. And those overdue ethical review applications…

See you in August! 🙂

As of April 5th 2021, a new US policy is requiring immediate release of records to patients. The rule require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.

In Sweden, we can access most of the information from our electronic health records through the national patient portal 1177.se – and there are national recommendations stating that all citizens should have immediate online access to all the information documented about them in healthcare, but the recommendations are not enforced and it’s up to each healthcare provider to decide what patients have access to and not. Still, Swedish patients probably have access to a lot more than many others, but it is at the goodwill of healthcare providers.

The new US rule will make it possible to fine healthcare providers or EHR vendors that block patients from access information. This of course sharpens the rule and hopefully will speed up the implementation.

Another major difference between the Swedish context and the US is that the new legislation also stipulates that people should be able to download their data to third party digital applications (apps) and aggregate all their health records into their digital platform of choice. This should be implemented by October 2022, allowing people to share health information with anyone involved in their care. In Sweden, this is out of the question. Similar solutions have be proposed, but have consistently been deemed not secure enough by the Swedish Authority for Privacy Protection. In fact, a function that would allow patients to add a person of their own choosing to have access to parts or all of their EHR was implemented in the Swedish “Journalen”, but removed after the Swedish Authority for Privacy Protection found it illegal. It will be interesting to follow the evolution in Sweden and internationally as patients are increasingly demanding and gaining access to their health information.

Earlier this year, I was one of the co-authors for a BMJ editorial on the new US regulation:

Salmi, L., Blease, C., Hägglund, M., Walker, J., DesRoches, C. (2021). US policy requires immediate release of records to patients. BMJ. British Medical Journal, 372

During 2020, I had the pleasure to work together with Åsa Cajander, Isabella Scandurra and Axel Wolf on a book chapter for a revised version of THE Swedish book on medical informatics; “Medicinsk Informatik”.

The book is written in Swedish, and consists of 31 chapters that cover everything from terminologies and interoperability, to ethics and sustainability. Our chapter focuses on person-centered care (PCC) and the relationship with eHealth in general and patients access to the electronic health record specifically. PCC aims optimize the care process and its goals by starting from what is important and important to the patient regarding their health, quality of life and goals, as well as healthcare professionals’ expertise, experience and guidelines / procedures regarding evidence-based care and treatment. Key components in PCC includes that information and knowledge is shared by all stakeholders (including the patient), and that the patient can actively participate in their care, decision-making, and documentation.

We discuss how patients access to their records (including ‘open notes’), has potential to support – or may even be pre-requisits to – PCC, but that the technical tools themselves are not enough. Patients who have access to information often report positive outcomes, but PCC requires that healthcare professionals are also engaged in a dialogue and shared decision making. This requires a change in practice too, and a willingness to collaborate in new ways.

During 2020, I joined forces with researchers all over Sweden with a special interest in digital care, specifically online consultations. We started a research network to exchange experiences, coordinate research and share results, both within the network and to other interested.

It’s really rewarding to bounce ideas, hear what others are working on and get feedback on your own work. The network is very interdisciplinary and with perspectives ranging from patient empowerment, to usability, to reimbursement and financial aspects it’s discussions are always very challenging and exciting. 2021 we will start a series of lunch webinars, where researchers presents interesting studies. Most will be held in Swedish.

19th of February 12.45-13.00 is our first webinar, where professor Åsa Cajander, Uppsala University, will present a study on how a chat function affected the work environment of healthcare professionals at 1177. The webinar will be held in Swedish, and is open for anyone to join. Find out more and sign up here.

Cajander, Å., Larusdottir, M. & Hedström, G., The effects of automation of a patient-centric service in primary care on the work engagement and exhaustion of nurse.  Qual User Exp 5, 9 (2020). (open Accesshttps://doi.org/10.1007/s41233-020-00038-x)

2020 was a year like no other. It’s been tough. I’ve managed to stay clear of the virus myself (and my closest family), but the necessary restrictions have been hard on us all. At the same time, it’s been a great year for me professionally and personally. It started off with renting out our house in Sweden and returning to Boston for a second semester in Brookline and at OpenNotes. Little did we know then that just a few months later we’d be confined to our small apartment, homeschooling and going for daily walks around the parks of the Emerald Necklace – pondering whether we would be able to safely return to Sweden as planned in July.

But everything worked out and we have now been back home in Uppsala for 6 months. So, what happened professionally during this 2020?

A lot of hard work writing funding applications paid off and two new international research projects were funded!

• NORDeHEALTH
• Beyond Implementation of eHealth

We started the Swedish research project ePrIm, focusing on how the implementation of ehealth in primary care affects the work environment of healthcare professionals.

We published some great research focusing on patients access to their electronic health records:

• Blease, C., Delbanco, T., Torous, J., Ponten, M., DesRoches, C. et al.(2020). Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?. Journal of Health Psychology Epub ahead of print
• Blease, C., O’Neill, S., Walker, J., Hägglund, M., Torous, J.(2020). Sharing notes with mental health patients: balancing risks with respect. Lancet psychiatry, 7(11): 924-925
• Blease, C., Torous, J., Hägglund, M.(2020). Does Patient Access to Clinical Notes Change Documentation?. Frontiers In Public Health, 8
• Hägglund, M., Blease, C., Scandurra, I.(2020). Mobile Access and Adoption of the Swedish National Patient Portal. Studies in Health Technology and Informatics, 275: 82-86
• Hägglund, M., Helsing, E., Scandurra, I.(2020). Personalized Communication – People with Hearing Loss’ Experiences of Using a National Patient Portal. Studies in Health Technology and Informatics, 270: 1031-1035
• Peute, L., Lichtner, V., Baysari, M., Hägglund, M., Homco, J. et al.(2020). Challenges and Best Practices in Ethical Review of Human and Organizational Factors Studies in Health Technology: a Synthesis of Testimonies. IMIA Yearbook of Medical Informatics

We transformed courses to online teaching and I’ve been the course director for two new courses at Uppsala University (and I was awarded the title Excellent Teacher!):

• (3HI003) Health Innovation and Entrepreneurship in Practice, 5.0 credits – Course director
• (3PE051) Implementation of Medical Technology, 5.0 credits – Course director

I also recruited two new PhD students (Annika Bärkås and Irene Muli) who will be working with us in our ongoing research projects around patients access to their electronic health records and online consultations in primary care. The latter topic is also the focus in our new research network where researchers from all over Sweden exchange ideas and collaborate.