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
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!
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!):
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.
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.
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!
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!
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?
Maria Hägglund is an Associate Professor in Health Informatics at Uppsala MedTech Science and Innovation, Uppsala University, Sweden. She has a PhD in Medical Informatics and worked at Karolinska Institutet 2009-2019 before returning home to Uppsala.