Before Christmas Jonas Moll and I were interviewed in a pod cast at about our research on medical records online. The pod cast was produced by department of media technology at Södertörn högskola.
You can find the pod at the MT web page: http://www.mttalks.se/pod/
There seem to be many very interesting pods at this pod cast, and I will make sure to listen to them all in the near future!
Last week Gerolf Nauwerck and I did a presentation about Digital Work Environment at the Swedish Ergonomic Society’s yearly meeting. This blog post will shortly describe this presentation. It was the first time that Gerolf and I presented together, but despite limited time for preparing it went really well much thanks to Gerolf and an enthusiastic audience.
Gerolf started off the presentation by discussing the term Digital Work Environment that is used by for example Digitaliseringskommissionen, Prevent and Vision. For example Digitaliseringskommisionen defines it as:
“The work environment in the digital economy”.
There is no scientific definition of the word, and in research other terms are used such as work engagement and healthy work.
Twenty years ago there were numerous different professions that worked with different tools, but working life has changed and today most work is done using a computer or an iPad, or other ICT technology, see image below:
When looking at the digital work environment there are numerous alarm reports from health care such as Isabella Scandurras “Disturbing or Facilitating“. Most health care professionals use around 25 different computer systems in their work, and these are often not connected or made to work well together even though they spend much of their time working through these systems. Physicians spend around 50% of their time working with the computer, and around 50% doing other things such as meeting patients. There are numerous media articles about the problems with ICT in health care, see the picture of the blog post. The problems are alarming, and health care professionals are as a consequence not always positive to changes related to IT.
One example of digitalisation in health care is medical records online for patients. Most physicians and nurses are very worried of the effects of this system. Mostly they are worried about the effects on the patient, but they are also worried about the effects on their work environment through the following changes:
Health care is not the only area where the digital work environment is problematic. Unionen (one of the largest Swedish unions) distribute a yearly or biannual survey to their members to investigate the digital work environment. The sub-titles of their reports called “The digital work environment of white-collar workers” tell us about the results from the survey:
2008: Why doesn’t it get better?
2010: A system error?
2011: Always online – never relaxed
2012: One step forward and two steps back
2014: No lightning ahead
In the seminar we continued with discussing what is known about software development and success factors, and we presented the results from the CHAOS report and research reports that show that one of the most important things when developing good IT for work is user involvement. But I guess that you already knew that 🙂
The DOME consortium presented a paper at the conference Medical Informatics Europe (MIE 2016), in conjunction with Health – Exploring Complexity: An Interdisciplinary Systems Approach (HEC 2016), At Munich, Germany this summer.
The paper contrasts the perspectives of physicians and nurses when it comes to putting medical records online for patients to read and discusses how patient empowerment (which is one of the goals of putting medical records online) meets concerns for patients.
The presentation at the conference was made by the very professional Christiane Grünloh and Hanife Rexhepi, and the paper was written by then and other DOME researchers: Rose-Mhaire Åhlfeldt, Gunilla Myreteg, Isto Huvila and me.
The paper addresses the difference in perspective between physicians and patients that we have seen in our studies.
It is a paper well worth reading, and the presentation has excellent slides presenting the difference. Read it!
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:
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. 🙂
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!
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:
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?
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
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.
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 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.