Tag Archives: eHealth

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.

Why are Ambient Assisted Living Technologies so Difficult to Develop?

I was appointed as one of the external reviewer of Jean Hallewell Haslwanter´s PhD dissertation with the title “User-Centered Development of Sensor-based Systems for Older People”. I must say that this was indeed an interesting thesis to read and I strongly recommend it for anyone who is interested in healthcare technology and user-centered design.

Ambient Assisted Living (AAL) is a technology that has been proposed to help society with problems related to an ageing population, as it could support older people to live at home instead of moving into elderly homes. However, despite the fact that many IT projects and companies have been working with the development of this technology, and large amounts have been invested in AAL, few such technologies has reached the market. In her thesis, Jean Hallewell Haslwanter addresses the issue from a user-centered design perspective and her work aims at understanding why AAL technologies have proven so difficult to develop.

The thesis has a substantial empirical contribution as it studies the development of AAL systems. One interesting finding is that the complex and multifaceted descriptions of the users fade away as the project continues, and is replaced by stereotypes of older people. Other contributions include recommendations for practitioners working with development of AAL technology.

Jean Hallewell Haslwanter’s dissertation is a monograph, but she has 13 research papers that are previously published. Many of the papers are conference papers, of which many appear in highly ranked international conferences. There are also conference papers that have been turned into journal papers. If you are interested you can find these publications online at the link.

Meet Our Students at Vitalis 2017. They will present “Envisioning Technology in Healthcare in 2025”

The students of the IT and Society Class of 2017 will present their work at Vitalis 2017 in Gothenburg. I wrote about the start of this years’ course in this blog post. This years’ student project was lead by Mikaela Eriksson (who has a bright future ahead of her as a leader). She worked hard in the project, and togehter with a team of around 30 students they have reserached the future of technology in healthcare in 2025. They also produced a YouTube film. This project was a collaboration with the county council in Uppsala and the topic of the project was set by them.

If you are interested in our work with this course, we have written several papers about it, and constantly improve it.

Below is the abstract to the student presentation.

See you at Vitalis! 

As a part of an interdisciplinary course, students from Uppsala University, Gannon University (US) and Rose-Hulman Institute of Technology (US), have collaborated with the Uppsala university Hospital to work on a vision for how healthcare can look like in 2025. With a technical background, our work has a different view on the field of healthcare. Not being limited by the present boundaries of healthcare regulations, we will present technologies from various areas and how they can be applied in future healthcare. With the patient in mind, we will answer questions such as:

 

  • What are the possibilities provided by technologies such as drones and artificial intelligence?
  • Can technology from the retail and banking sector be used in healthcare?
  • How can the gaming industry influence the patient experience?

In order to explore healthcare services and understand the patient’s needs we made field visits, which included observing current ways of working and interviewing involved stakeholders. In order to summarise and conclude this research, we conducted vision seminars. As a method for participatory design, we invited healthcare professionals and patients to discuss the current situation and future visions together.

In our research we have observed a very scattered patient experience, involving long waiting times and misleading and/or limited information exchange between patient and healthcare professionals. Our research has shown that today’s healthcare could be improved by increasing patient involvement. Inefficient systems take time away from staff and current technology limits communication.
Based on our research regarding technology in healthcare, we will present different scenarios to describe our vision for how healthcare can look like in 2025. Using examples from chronic diseases (diabetes), temporary severe diseases (cancer), and accidents (head trauma), the goal was to cover multiple aspects of healthcare – before, during and after a hospital visit. Having real life situations allows us to illustrate how various kinds of technologies can improve the patient experience in different scenarios. The idea is to give examples of how future everyday life technology such as self-monitoring devices or virtual and augmented reality could be used to generate a more patient-centered and technology enhanced care.

PhD on Physician’s Development of Competence in Antibiotics Prescription

Lats week I was on the examination committee of a PhD defence at Karolinska Institutet in Stockholm. It was Arash Hadadgar who defended his PhD called “Electronic Continuing Medical Education, approaches to better understand the general practitioners’ intention to use eCME and assess their competence”

This time the PhD was in the area of physician’s development of professional competence in prescribing antibiotics. The topic is of urgent interest for society, as antibiotics prescription will result in bacteria that are resistant to treatment with antibiotics. This area was the topic for Uppsala Health Summit in 2015.

Professor David Topps was the opponent at the dissertation, and he first did a presentation of the background to the PhD, and also discussed very thoroughly with Arash Hadadgar.

In the introductory presentation David Topps mentioned some very interesting things from the background to the PhD thesis that I want to share with you:

  • We all have a tendency to learn more in areas that we are already interested in, and when choosing freely we often do not choose to learn more about things we know very little about.
  • We are generally not very good at self assessment. Experts underestimate their own knowledge, and the novices overestimate their skills.
  • In some areas we are really not very good at all at self assessment. For example: We all think that we are better than the average driver 😛
  •  There is very little research that tries to connect the real behavioural changes that are a result from educational activities. (Arash Hadadgar does this, however)
  • There are more cheaters in any kind of education than what we might think.

The discussion was very thorough, and also extremely interesting from a scientific point of view. As always it was a great learning experience for me 🙂

What is DOME? Some Words about the Background and the Consortium from My Perspective.

I have collaborated with the county council in Uppsala since 2003 as a part of the project course IT in Society. In this course I collaborate with my husband Mats Daniels who does research on learning environments for developing professional competencies related to IT systems development. The course is based on the teaching strategy of Open Ended Group Projects. Through this course we worked on the topic “Medical Records Online for Patients” a couple of three times between 2003 and 2011. The students did thorough research as a part of their course, and they also wrote one of the white papers that the county council sent to Brussels to get funding for the SUSTAINS project.

Around 2012/ 2012 the large EU project named SUSTAINS started and was coordinated by the county council in Uppsala. Mats Daniels and I were contacted by the project managers Benny Eklund and Leif Lyttkens (with whom we collaborated in the IT in Society course) who asked if we wanted to start a research project and do research on the implementation and consequences of putting medical records online in Uppsala county.

The SUSTAINS project had a meeting in Uppsala around new years eve in 2011/2012 and my husband and I set up a brief document describing the major ideas behind a research project and you still find these ideas in DOME today. These idead were presented at the meeting to see if there were other researchers interested:

  • Three work packages:
    • 1) patients & relatives
    • 2) health care professionals
    • 3) systems development and implementation
  • Multidisciplinary research
  • Studies on the effects of the implementation from different perspectives using both qualitative and quantitative research methods.

My main research areas are IT and work, and how we develop and implement IT for work. However, in DOME I have not only done this but also research looking at the implementation from the patient perspective.

After this initial meeting we organised a few start up meetings in Uppsala for researchers that would be interested in this work. We got help from the EU coordinators at the university to find people, and somehow the words spread and we became a group of around ten people very quickly. I had never met most of these researchers, but we had very open and creative discussions.

During the first years the DOME project had funding from VINNOVA, and the last few years it has changed into a research consortium that consists of  researchers with funding from different sources. This fall we have funding from AFA through the EPSA project, Forte through the DISA project as well as strategic research funding through Örebro University and Uppsala University. This spring there will also be some funding from NordForsk through a new centre for gender research, and from Forte through the PACESS project.

The number of active researchers in DOME has varied over the years, but we are around 12-15 people that participate in meetings and do studies on medical records online. We come from six different universities, and we meet using Skype every three weeks and have a conference every semester at one of the universities. The next DOME conference is organised in Skövde in March 2017. DOME has a small group of leaders, and I am the coordinator of the consortium.

DOME is an open consortium and the only criteria for joining us is that you want to do research in the area of medical records online for patients, and that you spend time with us in DOME.  You can come from any area of research, and any university. 🙂

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!

Patient Empowerment of the Future – Hälsa för mig by Helene Richardsson

Helene Rickardsson made a very interesting presentation about “Hälsa för mig” that I listened to the other day. Hälsa för mig is an eHealth service provided by the eHealth Authority in Sweden for patients. The service makes it possible for patients to securely store their data related to health, and patients can also use other services such as health apps to change, delete or create new information. The image for the blog post is not an image of the system as such, but more a general idea of what it could look like.

Hälsa för mig will also connect to the patients electronic health record Journalen, so that the patients can use this information in connection to other services such as applications about exercise, blood sugar, sleep and food. Hälsa för mig is a service provided from the authorities where information is securely stored (or as securely as possible), and where the national eID is used for logging in.

The system Hälsa för mig will start run as a pilot in 2017 with vaccinations and lab results in the counties Värmland and Jönköping. There will not be a big launch countrywide, but a stepwise implementation of the system to make sure that the system works properly.

Many of these new eHealth services such as Journalen and Hälsa för mig are made from the perspective of increasing patient empowerment, as research shows that having access to your own information is crucial for being in charge of your own health.

Helene Richardsson gave examples of how this service can be used for securely storing information about blood pressure, weight and data from activity bands such as UP Jawbone and similar.

In the discussions around this service some interesting points came up:

  • The business models for app development in relation to Hälsa för mig are not in place. Very few companies are interested in app development so far. Other countries have experienced the same problems. This is really interesting and a bit sad 🙁
  • The service is in many ways similar to the app Health that iPhone provides. The major difference lies in the storage of data. In the app the data is owned and sold in an anonymous way, in Hälsa för mig it is safely stored without being sold.
  • One can wonder if the autonomous county councils will have their own interpretations regarding the use of Hälsa för mig, just as they have had so far when it comes to Journalen.
  • Do users really think about security and the difference between Hälsa för mig and the iPhone app? Do they ever consider that he information in the app is not really securely stored, and that the anonymized information is sold to different coutries?

One final remark is the health care professionals perspectives on this, and in what way this will affect the work environment in health care. I know from our DOME studies that health care professionals often worry about the patients. They worry that patients will misinterpret information, be worried and not understand the holistic perspective, to give a few examples. In what way do health care professionals think about Hälsa för mig?

 

 

 

 

Please do not confuse your google search with my medical degree – workshop paper at NordiCHI 2016

Last week DOME presented a workshop paper called: “Please do not confuse your google search with my medical degree” at NordiCHI 2016. The paper presents a critical incident regarding relatives reading medical records online where a relative reads the medical record online and googled, and received, a cancer diagnosis.

The workshop included a poster presentation, and the fantastic poster by Hanife Rexhepi and Christiane Grünloh is the image of the blog post. During the workshop we worked very actively with writing post-it notes about the different posters, and it was many interesting learning opportunities found. I really enjoyed the workshop, and I was really impressed by the organisational skills of Christiane Grunloh who was keeping everything togehter in a very nice way.

The paper’s abstract is as follows: 

The availability of medical devices, health apps, and online resources of health data has led to concerns regarding how to identify the quality and validity of online health information. Concerns about patients’ health information seeking on the Web mainly come from the healthcare professionals, whereas patients often seem to be satisfied with the information they find online since they use it to improve the knowledge base about their health condition. This position paper aims to outline a critical incident that illustrates the patient perspective of searching online information in relation to the eHealth service Journalen where patients and relatives in Sweden can access their electronic health record online. The critical incident is based on a true story; it describes how Steve received his cancer diagnosis, and how his wife Tina googled to find out more about the diagnosis. This case illustrates how accessing your electronic health record and Google search can support information needs and increase the understanding of health data for patients and relatives, although the opposite is argued by many professionals in healthcare. Finally the critical incident is discussed in relation to the concept of eHealth literacy and patient empowerment.

A full text of the paper is found at Research Gate 

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.