Tag Archives: eHealth

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!

Welcome to my Key note at the “Forum for district nurses”, Stockholm 6-7 December 2016″

Welcome to two stimulating days where we focus on the challenges that you as district nurses encounter in your daily work. Together with colleagues from across the country, you will update you on the latest research, take note of successful case studies and learn methods to streamline your administrative work and reduce stress.

I will have a key note at the conference where I present recent research from the DOME project together with other interesting studies related to work as a nurse.

For more information and bookings see: http: //www.conductive.se/konferens-forum-distriktsskoterskor.html#program=talare

If you add the code Talare 10 you will get a lower price at the conference.

Interviews with Cancer Patients Reading their Medical Records Online

When medical records online was launched in Uppsala County Council a few years back many health care professionals were concerned, to say the least. There were for example some very upset discussions especially regarding cancer patients and medical records online, and the possibility to get bad news through a web page.

There were also critical incidents regarding patients reading their test results and getting a cancer diagnosis online, as in the screen shot that is the featured image in this blog post. The article is a Google translation from Swedish, and the original article can be found here.  The news article describes the story of a woman who got to know about her the return (?) of her breast cancer through logging in at a web service. This specific critical incident occurred in 2015.

So the question is:

Is reading your medical records online really a good idea for patients with diseases such as cancer? What do cancer patients in general think about the system? Is it useful for them?

As a result of this turbulence around medical records online and cancer patients DOME did an  interesting study with interviews with 30 cancer patients. I did this study together with my PhD student Hanife Rexhepi (I’m co-supervisor), Associate Professor Rose-Mharie Åhlfeldt and Professor Isto Huvila. We presented this study at Vitalis, and you can see the presentation here (in Swedish), we wrote a Swedish white paper on the study found here and also a journal paper in the Health Informatics Journal.

In the study we found that some cancer patients use the system on a daily or weekly basis for several reasons:

  • They are curious about what it says in the text, and in the test results.
  • To prepare for the next appointment with a physician.
  • To get a feeling of being in control when it comes to their decease.
  • As a memory aid when looking at what has happened so far with their decease.
  • To be able to understand what the physician said in the meeting.
  • To read up on the latest test results, and to compare to previous results.
  • To get the exact information, and not an interpreted oral version.
  • To decrease the waiting times in health care

One of the worries that health care professionals have is that patients would become worried, and some patients said that of course it is worrying to read about the decease sometimes.

“If we can handle to live with all these deceases- we can handle to read about them too”

In our study almost all patients choose the option to see everything at once in the system and not to wait until the information is signed by a doctor. This is also confirmed by statistics that say that 98% of all patients want to read as soon as possible, and do not want to wait for the information to be signed by a doctor. Many patients in our study describe the waiting for results as the most difficult part of being ill, as one patient said:

“For me it is good to read. It is much worse to go around and wait. No one wants to tell you anything.”

One of the more controversial results from the study was that some patients preferred to read about negative development in their cancer, or the occurence of cancer online, as in this quote:

I personally want to know. Even though it is tough. It is not less tough to get to know it a few days later, or by someone who wraps the bad message inside mumbo jumbo words to soften it and says that it is not too bad and so forth. No, I want straight answers.

One should note that all 30 patients in the study thought that being able to read the medical records online is a good reform, and that the system should exist as a possibility for those patients who want it.

I have had a meeting the Oncology department at the hospital to discuss the possibility of doing a follow-up study on patients reading their medical records online. Some of the things we want to understand is the use and non-use of the system, and how it affects patient empowerment. We also need to do a follow up study because there is a risk that the people that we interviewed were early adopters of the system, and we want to find out what the mature users think.

So there are more studies to come in this interesting area!

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!

Robots Instead of Health Care Professionals??

I listened to the introductory key note from the conference Human Centred Software Engineering by the very inspiring Danica Kragic on social robotics.

Clearly robots such as avatars of humans will influence work very much in the future. One of the areas of application is health care. Danica Kragic mentioned health care services such as Cognitive Behavioural Therapy, and research has indicated that this might be a possible future avenue. Physicians would collaborate with robots in their work, and part of the work would be replaced by robots such as some part of the therapy.

Hmm. One can wonder what the reactions from physicians would be if we start doing research on replacing them with robots or machines? And how would the patients react to robots? Perhaps not as negative as one could think?

One can also wonder how the professional competence of health care professionals can be transfered to robots?  Is this possible?

BTW: If you haven’t listened to Danica Kragic’s Sommar, I highly recommend it (in Swedish only, though) ?

Patient Empowerment – from what to how

One of the buzzwords in health care is surely patient empowerment. However, as with many words there is no consensus of what it means, and what good practices are connected to it, even though it it widely used both in discussions, in media and in research. This weeks I have been working on an interesting paper on physicians view of this concept “patient empowerment”, and I have also discussed the concept in relation to a workshop dress rehearsal as a part of Uppsala Health Summit. The workshop that I am co-organising there is called “Empowering Towards Healthy Behaviours”. This blog will be about the concept, and the ideas surrounding it with patient centred care and a paradigm shift in health care.

There are numerous definitions to the concept, and it is closely connected to the patient centred world view. Some define empowerment as a process in which we should make individuals think critically and make informed decisions. Some see it as a state that you either have, or don’t have. Some discuss patient empowerment in relation to compliance, and to following the doctor’s instructions even though others see empowerment as the “antithesis of compliance”. 

I am very aware that the ideas of patient empowerment is not always embraced by health care professionals. Some of the professionals that I have talked to, and interviewed feel threatened by the concept. Notably this feeling was more common among young female doctors in this study, but that might have beed only coincidence.

My opinion is:

We need to move away from defining what patient empowerment is, and make a more reflected discussion on how we make it happen. What are the good examples of practices that lead to patient empowerment?  What are the actions needed on all levels of society to make this paradigm shift real? What behaviours from doctors and patients lead to the possibility of patient empowerment? How do we end the silence in communication between physicians and doctors, as described in the book “The silent world of doctors and patients” by Jay Katz. How can technology play a part in this change?

This is an interesting topic, and I will surely come back to it in my blog


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 🙂