Tag Archives: workshop

Care for Cancer – Reflections on Uppsala Health Summit 2018

This summer I participate in and organised Uppsala Health summit together with lots of other people. For me the theme of the Health summit was indeed top priority as I have many friends and family with cancer. I have seen how cancer treatment work at close hand through my husband who was diagnosed and treated with cancer a few years ago. Since I have done studies on patients and health care professionals, this experience gave me another depth in my understanding of cancer. It is difficult to imagine living with the uncertainty of treating cancer, and also the change of adapting your whole life to cancer treatments. Luckily my husband has had few side effects from the cancer, and everything has gone very well so far.

As a part of organizing the Uppsala Health Summit we wrote a debate article that was published in Dagens Samhälle, found here. Some of the things we say in this debate article are:

  • We need to work with the infrastructure so that IT systems can share information and data. I have seen this at close hand, and the computer systems are sometimes like black holes in health care. The system at the different departments did not talk to each other, so there was little coordination between radiation and chemotherapeutic treatment for example.
  • Physical treatment needs to be an integrated part of all cancer treatment, and also a part of what is recommended as a part of life for cancer survivors. No one mentioned that physical activity was so crucual during my husband’s treatment and we didn’t understand that it was that important.
  • Cancer treatment needs to be more equal across the world. During the Uppsala Health Summit it was shocking to hear the circumstances in other parts of the world, and to listen to the presentations made about the understanding of cancer. This is an area that I would like to get involved more in and to try to help!

I hope that the Uppsala Health Summit has contributed to some steps being taken towards better cancer care.

Experiences from an Expert Workshop in the Area of Medical Records Online for Patients

Last week I organised an expert workshop in the area of medical records online for patients. The workshop was organised in conjunction with the EHiN and International Conference of Telemedicine. Around thirty people attended the workshop, mostly from the different regions in Norway. The workshop information was distributed by us and by INERA who coordinate the introduction of medical records online in Sweden.

The photo for the blog post is from Jonas Moll’s Twitter stream and is a photo of the very cool and well organised conference.

Jonas Moll and me from Uppsala University organised the workshop with Norwegian colleagues: Tove Sørensen and Monika A Johansen from the Norwegian Centre for E-health Research, and also with the excellent Isabella Scandurra, who is a Health Informatics Researcher from Örebro University

The workshop started with a description of the service “Patients’ digital access to their health record”: How much information, which type of journal documents, to how many people, for how long time? with a comparison between the different implementations that exist in Sweden and in Norway. One difference is for example that the primary care notes are not shared online in Norway, and another difference is that Norway do share psychiatry medical records online which we don’t do in Sweden.
We continued with a role play to start up the discussion about who should have access. Jonas Moll did the role play together with Isabella Scandurra and me, and the aim was to present the problematic situation that exists for patients since the information that is shown varies very much between counties. Jonas presented his view as a patient and asked about what could be seen online. I pretended to be Uppsala County Council and tried to make Jonas move to our county. During the role play my best argument to him as a patient was the possibility to see the test results online in our county, and to have graphs made that represent the fluctuation of the test results over time.
We then discussed what type of journal documents should be provided. There has been long discussions in Sweden regarding the children’s medical records, and in Norway they have also had discussions about the appropriateness of showing the medical records online for people with cognitive disabilities.

Most probably we will arrange a similar workshop at Vitalis together with INERA to facilitate the discussion around what should be shown and to whom. See you there!

DOME conference in Uppsala

Last week we had a conference in Uppsala about the research done on medical records online for patients. We were fifteen people attending the conference, and a few listening in on Skype on the second day. During these days there were many nice discussions and presentations, and this blog will only highlight a few. There will be a separate blog on a presentation about psychiatry care online and research on this launch in Skåne.

Leif Lyttkens talked about the importance of having researchers collaborating with the eHealth developers when launching medical records online for patients. The research consortium has been independent and funded by Vinnova and other research organisations, but we have collaborated with the development project to study for example the problems with cancer patients reading their medical records online (see previous blog post).

Mia Pettersson presented the work with medical records online from INERA’s perspective. She described that the service is mostly used Monday morning, and not during the weekend (see the picture from Mia’s presentation attached to the blog). She also said that there is now around 800 000 users of the system in Sweden, and that there will be even more in the future. INERA gets around 400 questions from patients regarding the functionality of the system, and many questions are about what information can be found, and why some pieces of information is missing. These questions are a result of the very varied implementation in the different county councils. Mia also mentioned that patients in Skåne has a substantial larger amount of questions than people in other counties.

We also presented and discussed the different research projects that we have in DOME and possible collaborations and synergies so that we get the most useful knowledge out of them. Isto Huvila presented the HIBA project, Maria Hägglund and Isabella Scandurra presented their new project, and I presented the Forte project.

We plan to have our next meeting in the spring 2017 in Skövde, and there we will discuss the future work in DOME.


Invitation to Participate in Workshop about Medical Records Online in Conjunction with the EHiN – ETC conference in Osto the 14th of November 2016

Patients’ digital access to their health record: A service for all?

To increase patients’ empowerment and involvement in their own health, several countries have decided to provide patients with digital access to their health record. The approaches differ between and within countries; in some regions most of the journal is digital accessible for patients and in other regions, only a subset of the journal is available online. Based on the experience with patients’ digital access to their health record, the workshop will explore the rationale for designing the service: Is the ambition a digital copy of the full journal for all patients, and if not, what is the rationale for excluding certain groups or types of documents? The workshop aims to increase the knowledge in Europe regarding the patients’ access to their health record by discussing technical, legal, organizational, practical and cultural barriers for a service for all, as well as investigating possibilities for the future.

The workshop is targeting everyone who has experience with using, planning, implementing, or researching a service for patients’ digital access to their health record. The workshop, which is dependent on active participation in discussions, is open for EHIN-participants by special registration on a first come first served basis as there is a maximum number of places. Deadline for registration is 7 November. Participants will receive material prior to the workshop to read as a preparation for the workshop. The workshop is organized by the Norwegian Centre for e-health research and the DOME research consortium, coordinated by Uppsala University, Sweden.

For further information and registration, see:  http://www.ehin.no/sessions/workshop-patients-digital-access-to-their-health-record-a-service-for-all/

See you at the workshop!

The Future of Health Care: Student eHealth Project Kick off with the County Council in Uppsala

Now we have had a kick off day for this year’s project course in the IT in Society Class at Uppsala University. This is a collaborative class with students from thee different universities: Uppsala University, Gannon University and Rose-Hulman Institute of Technology.  Their project course is based on a student-centric learning philosophy, and open ended group work. Previous years the students have worked on various topics that are related to eHealth systems. 

We are constantly working on improving the course and the learning experience, and we have published some papers on the collaboration in the area of Computer Science Education.
This year 20 Uppsala University students will collaborate with 12 Americans on the topic:

Health systems in the future and possibilities with digitalization- Integrating systems

During the kick off day, there were a large number of people presenting their perspective of this years’ project. Annemieke Åhlenius who is the head of IT at the hospital was first and presented the Uppsala County Council’s . Some of the challenges that Annemieke and the county council face are in relation to:

  • co-ordination and interoperability
  • usable to whom?
  • integrity
  • prioritisation

This was an interesting presentation with some of the ideas similar as in this YouTube film, ending with “We need your help!” and some topics that the County Council would like the students to work on are:

  • Best in breed or best in sweet? (Standard systems or uniquely designed software)
  • For whom are we documenting in the Electronic Medical Records (EMR)?
  • How to archive one EMR instead of several professional-based ERM:s in one system?

Åke Nilsson who is a senior advisor at the County Council, was the second presenter, and he presented the national services that we have in Sweden. The most striking part of his presentation was the dependency map that he showed that clearly illustrated the complexities of eHealth. He also mentioned “the double work” that is a result of all these dependencies. People add the same information in many different systems.

Gustaf Hedström works with computer based decision support and Birgitta Wallgren who nowadays works with IT,  also did a very motivating presentation for the students. Gustaf presented how the work as a health care professional has changed, and the history of Electronic Medical Records (EMR).

Birgitta Wallgren describes that health care professionals want to work with patients, and they do not want to do the documentation. She presents the problem of documentation during surgery where one person documents what happens. Today they have many systems where they need to document, and there is very little integration between the systems.

Gustaf Hedström continued by describing the complexity of being a health care professional and being up to date, and that 1.244.252 papers were published in the Life Science area. Today it takes about 17 years for research in these papers to be implemented in the health care systems, according to Gustaf Hedström. And this is of course too long!

He also continued describing the health care system in the US, and had a fantastic quote from a physician that he had met:

There is no way I can summarize the health care system in the US, it is chaos

I am really looking forward to this years’ project, and for sure will blog about it some more.

The Uppsala Health Summit Pre Conference Report is Now Out

I am one of the co-organizers of this year’s Uppsala Health Summit. Now the pre conference report is out and available for everyone that is interested in this year’s topic: Ending Childhood obesity.

Surely this year’s summit addresses a very relevant topic, and I am sure that it will attract people from all over the world to join in the discussion and learn.

Please spread the word about this Health Summit that is an international arena for dialogue and an enabler for change. At the summit one can lay an arena for long-term relationships and insights that can help us improve health outcomes in the world.

You find the pre conference report online here.

See you at the health summit!

Uppsala Health Summit on “Empowering positive behaviour changes in complex food environments”


I am co-organising a workshop at Uppsala Health Summit this year. I am organising it together with professor Isto Huvila from DOME , and some new acquaintances from the university:

  • Dr. Meena Daivadanam, Post Doc, Dept. of Food, Nutrition and Dietitics, Uppsala University
  • Professor JoAnne Dahl, Licensed Psychologist and Psychotherapist, Professor of Psychology, Department of Psychology, Uppsala University

The workshop is about behaviour change, technology and child obesity. The title is: “Empowering positive behaviour changes in complex food environments”

Efforts to reduce childhood obesity rates must take the child´s immediate environment into close account. To grow, thrive, avoid the risk of becoming obese, a child needs support by his or her caregivers, who in turn need support by the community and society at large. How can we empower children and their families to navigate the complex world around them and develop healthy food and exercise behaviours?
The discussion will be introduced by Dr Pilvikki Absetz, Associate professor and CEO from the social innovations entreprise Collaborative Care Systems in Finland, and Michael Quarshie, founder and CEO of Wellness foundry.

During the workshop we will use the fishbowl technique which will be extremely interesting to organise, and learn to use!

-See you there 🙂 


Workshop on Critical Incidents when Designing, Developing and Deploying eHealth Systems

Welcome to a very interesting workshop on critical incidents when designing, developing and deploying eHealth Systems. The workshop is organised in conjunction with NordiCHI 2016 in Gothenburg. I am organising the workshop together with several other DOME researchers


Call for participation