Workshop at Uppsala Health Summit 2018: Using Data for Better Cancer Treatments

The international Uppsala Health Summit is an annual meeting for dialogue on challenges for health and healthcare. The summit is a collaborative effort between eleven Swedish public and not-for-profit partners, led by Uppsala University. Each year, the summit focuses on one challenge for health and healthcare and the question on how to overcome obstacles from implementing knowledge from research and innovations. Around 200 personally invited experts from all over the world and from different sectors come together to engage in dialogues in plenum sessions and in solution-oriented workshops. Last year, delegates came from 39 different countries.

Summit 2018: Care for Cancer

This year’s summit takes place form 14-15 June 2018 is themed Care for Cancer. Patients today have more opportunities than ever to survive and even to recover from cancer. However, the world is facing growing incidence and prevalence of cancer and preventive actions (e.g., adopting a healthy life-style) can only solve some parts of the problem. The provision of financial resources as well as equal access to treatments is challenging for healthcare systems around the world, despite growing treatment opportunities.

Uppsala Health Summit 2018 focuses on how we can open up these opportunities for a growing number of patients, by making better use of data and technologies and on how such use can pave way for a more equitable access to the best possible treatment and diagnostics within any given context.

The programme is available here and addresses a broad range of topics in workshops and plenum sessions. Some of these are: precision medicine in cancer care, patients as a driving force to develop care, long term care for cancer survivors, access to treatments and diagnosis, implementing physical exercise in cancer care, and many more.

Our Workshop: Using Data for Better Cancer Treatments

HTO group members Åsa Cajander, Christiane Grünloh, and Jonas Moll are also organising a workshop on Using Data for Better Cancer Treatments.  In our workshop, we will make use of the Critical Incidents workshop format we have used before at other venues (e.g., at NordiCHI 2016, which is described in more detail in this paper, and at Medical Informatics Europe 2018, which Jonas wrote about on his blog).

A critical incident is an event that has happened to a person and that this person regards as important or significant in some way. Such an incident can be very useful to learn from, and thus it can be an event that is perceived as positive or as negative. Critical incidents have been used a lot for critical reflection in areas such as aviation (e.g., to analyse failures or human errors), health, education and social work.

For our workshop we reached out to experts and asked for incidents we could use in our workshop to inspire discussion in the group work. Kelechi Eguzo, Marije Wolvers, and Isabella Scandurra will present their critical incidents, which have been illustrated by Maja Larsson.

As the aim of our workshop is to develop Visions of the Future, we are very happy that Prof. Bengt Sandblad will give a keynote on Future Workshops, which is a well established method that has been used in various domains (e.g., healthcare, traffic control, administrative work). Making use of the instructions for a future workshop, we will then develop visions of the future from different perspectives: researcher, physician, nurse, or patient.

Together with more than 60 delegates who signed up for our workshop, we will sketch A Day In a Life in 2050. As workshops at the Uppsala Health Summit are solution-oriented, we are including answers to questions such as:

  • Who must be involved?
  • Who can take the first step?
  • How will this contribute to more efficient cancer care?
  • How will this contribute to more equal cancer care?
  • Improve to the individual patient’s quality of life
  • How can this influence which health decisions the patient and her kin can make?

We are really looking forward to the Health Summit and will also attend other workshops and plenary sessions. You can read the pre-conference report where all workshops are outlined here.

ECSCW–the Rise of the Machines?

ECSCW 2018 took place in the beautiful French town Nancy and was hosted by Inria. As always there was a friendly atmosphere and a nice mix of presentations. I was there to present an exploratory paper by Rebecka Cowen Forssell and myself, on the Digital Work Environment. (A presentation most likely to remembered mainly for the art nouveau homage to Nancy, I’m afraid). However, there were a lot of interesting presentations, and here I will highlight just a few topics that I personally found interesting.*

The initial keynote by Antonio Casilli on the micro work behind AI was worth the trip alone. It was a great presentation on a very important topic. Indeed, this dispelling of the myth of AI was a theme that came up in a number of talks, not least in relation to the promises of automation in Industry 4.0. I also had the opportunity in one of the breaks to listen to Edgar Daylight’s historical perspective on this–AI being notoriously famous for recurring hypes.

The presentations covered a wide range of topics, from the Tatbeer ritual (Majdah Alshehri) over socio-technical heuristics (Alexander Nolte) to digital sticky notes (Sarah-Kristin Thiel) but somehow it all fitted together. I guess part of this can be explained by some of the traditions of the ECSCW community.  Here, Stuart Geiger’s presentation of documentation work was a fine example of the ever present ethnographic perspective. The humanistic values were evident in Renwen Zhang’s talk on online support groups for depression in China as well as in Isaac Holeman’s plea for Silence.

There were quite a few presentations that were more directly relevant for my own work, including Luigina Colfini on work-life balance, Nina Boulus-Rødje on supporting knowledge workers and Pernille Bjørn on variations in oncology consultations. I also found Yuri Lima’s poster on a tool for assessment of disruptive ICT in the workplace very promising. In their study on collaborative design projects in school contexts Netta Ilvari and her colleagues used service research as a theoretical lense, a theory I have been considering using myself. 

However, the conference had a special focus on computer support for qualified industrial work—Industry 4.0/the industrial internet of things—and the challenges were well summarised by Thomas Ludwig from Siegen. The Siegen crowd was as always strong in quality as well as in quantity. There is a lot of interesting research going on there that seems to touch on many of the same topics we are studying, although in an industrial setting. As proven by the panel discussion, similar studies are of course taking place in other countries as well, examples were given from Austria and France.

Speaking of Austria, ECSCW 2019 will take place in Salzburg and we got a glimpse of the venu and the playful new facilities that Verena Fuchsberger and her colleagues are enjoying.

Who knows, maybe I’ll be back…

*A formal note: I refer just to the presenter here, in most cases there were co-authors, see the Eusset proceedings for full information.

Article in Interactions Highlighing the SIGCHI/EIT Health Summer School

Last summer many from the HTO group joined the SIGCHI/EIT Health Summer School that was organised in Dublin and in Uppsala/Stockholm. The photo in the blog post is from the amazing library at Trinity Colleague.

The magazine Interactions highlighted the summer school in their latest edition.

The article highlights some of the learning experiences from organising such a summer school, such as that demand is high for such summer courses, patient participation is very valuable and that it was easy to recruit contributors to the summer school.

I know that the other organisers of the summer school thought that it was a lot of administration, but all agreed that it was also great fun!

Interactions also highlighted some of the HTO groups’ blog posts about the summer school found here:

Jonas Moll: https://molljonas.wordpress.com/2017/07/01/ehealth-summer-school-in-dublin-day-5/

Christiane Grünloh: https://www.htogroup.org/2017/07/08/behaviour-change-social-practice-theory-and-learned-helplessness/

Diane Golay: http://dianegolay.ch/2017/07/05/on-humans-computers-and-why-users-should-not-be-blamed-for-struggling-with-computerized-systems/

 

Another Excellent Teacher in the HTO group!!

Now the HTO group has two excellent teachers as Åsa Cajander was awarded the title last week joining Lars Oestreicher who was awarded the title several years ago.

Uppsala University has a formal process for awarding skilled teachers the title “Excellent teacher”, and the title is connected to a salary raise. There is a board that appoints excellent teachers at each faculty, and the faculty of science and technology has one Board for Appointment of Excellent Teachers that meet every semester.

The curious reader find the guidelines for admittance of excellent teachers online in this pdf document. 

The trees that hide in the forest

Sometimes when we make studies on a work environment, e.g., as a preparation for software development, there seems to be a tendency to overlook the smaller things; things that actually have a greater effect on the work situation than we might think at a first glance. There is, of course, never any doubt that big software systems will play a big role in a person’s work over the day. When there are problems with these, this often causes large breaks in the workflow and are (hopefully) sorted out fairly quickly. But there are also many small things; those annoying nuances that might not be causing disasters, but merely make a person frustrated in the long run. These smaller inconveniences are often not detected or considered in the cognitive workspace design.

The idea of a cognitive, ergonomic work context was widely discussed in the 1980’s. (c.f., Hagert, Hansson and Oestreicher, 1987, Wærn 1988) . However, the overall combination of software systems as a work environment seems today to be stressed mostly as an issue of incompatibility, e.g. causing unnecessary copying and processing of data and similar issues. Even if we manage to make the systems compatible and exchanging the data between themselves there are many other environmental factors that will still be affecting the cognitive work context negatively. These factors are sometimes well hidden in the work procedures and may be difficult to assess for software designers, and sometimes they are actually not even software issues but rather involving advanced hardware solutions.

During our previous study visits at a hospital, there were many small things happening that were hardly noticeable, but which at the same time constituted important factors in the work situation. In some cases, these small things were not directly concerned with the software systems used (although it is possible to see some of them as relevant to the overall software systems design), but proper workspace design might actually include these parts in the larger software network.

Just after Easter, in 2018, I was hospitalised for a week with an evil strand of pneumonia. Apart from being sick it also meant an interesting and close view of the nurses’ work context and the tools that they used. Since I was actually a real patient (albeit of an observing kind) I think that the nurses were more relaxed than during the earlier study visit. So, I started to observe several things that happened all around me and in this and some following articles I will go through some of the ideas that fell well into the work context situation.

One thing that was quite apparent, both in the study visits and during my week-long stay at a clinic, was the fragmented workflow for the nurses. Among the ordinary work tasks, there were many local interruptions, from alarms for a certain patients medical condition (mostly false ones, but more about this later), to calls for non-urgent requests from patients for water, tending or other less acute matters. Also, there were incoming medical transports and phone calls which, although part of the work, often tended to interrupt the nurses in their work. This kind of phenomenon is very difficult to catch in a work design study since it more or less requires a longer period of observation in order to properly judge its significance for the work. In this way, we tend to see the forest (of tasks) as a single unit, whereas the nurses instead are working on all the small trees and shrubs (of smaller activities) that actually constitute it.

Another factor that has appeared is that while the design of the main computer systems often is very thoroughly prepared, both in terms of requirements on the software and the hardware, much less effort seems to be spent on the personal software and hardware(!). This means that even if we get very advanced software systems on the ward, the personal equipment often seems to be pretty much left out of the equation. Essentially, this is also very similar to working hard on defining the forest, but lacking the ability to see all the trees making it up.

In my following blogs, I will try to disseminate these issues into a few more concrete examples of this and even make some suggestions for how to proceed and also enhance the situation at a hospital ward with these observations as a base.

Lars Oestreicher,
DISA

(this blogpost is also published on my personal blogpage: moomindad.wordpress.com)

Digitaliseringen och arbetsmiljön – en nyutgiven bok av Bengt Sandblad mfl.

Boken som Bengt Sandblad från HTO-gruppen har varit med och skrivit finns nu att köpa! Du kan besälla boken tex här. 

 

Vad är en god digital arbetsmiljö? Hur går man till väga för att skapa en sådan? Trots att det i dag finns mycket kunskap om detta, ser vi fortfarande it-projekt som havererar och missnöjda användare. Det är uppenbarligen svårt att lyckas i praktiken. Teorier måste omsättas i praktisk handling.

När användningen och betydelsen av de digitala stödsystemen i arbets­­livet ökar handlar det i allt större utsträckning om en digital arbetsmiljö. Om alla ska kunna utföra sina arbetsuppgifter på ett effektivt och säkert ?sätt, med hög kvalitet och utan onödiga belastningar, måste man ställa höga krav på de digitala systemens utformning och införande. Erfarenheterna i dag är tudelade: dels bidrar it-systemen till förnyelse ?och verksamhetsnytta, dels uppvisar de alltför ofta stora brister vilket medför påtagliga arbetsmiljöproblem. Många användare är frustrerade över att deras it-verktyg inte stödjer dem eller fungerar som de borde.?

Den här boken ger en grundläggande beskrivning av kunskapsläget om digitalisering och digitala arbetsmiljöproblem, samt en omfattande vägledning i hur man kan utnyttja digitaliseringens möjligheter och samtidigt försäkra sig om en god och hållbar digital arbetsmiljö.

Presentation on “Individualizing Without Excluding”

Anna Normark and Rebecca Oskarsson presented their interesting master thesis on filter bubbles today. In their work they answer several research questions through the use of an experiment with bots on a social media platform, and a qualitative literature study on filter bubbles.

In their presentation they concluded that filter bubbles can be a threat to society, and that our awareness of filter bubbles need to be raised. However, interestingly enough they did not find clear evidence of filter bubbles in the experiment that they did on one of the existing social media platform. Though this does not mean that they do not exist elsewhere.

Anna Normark and Rebecca has previously presented their work twice in the blog, and you can read these blog posts here and here. I also hope that they will do one last blog post presenting some highlights from their resuls. 🙂

I was one of the supervisors of this master thesis work and I am very impressed. These students combine technical skills with an interest in society and ethics which is needed in our digital society. And today they also proved that they have  excellent presentation skills!

Presentation by Åsa Cajander and Jonas Moll at Medical Informatics Europe

During the first day of the Medical Informatics Europe (MIE) Conference Åsa Cajander and I presented the paper that was introduced in this blog post. Actually, this was the first presentation held by representatives from the HTO group during this year’s combined MIE/Vitalis event, but certainly not the last – we were active on stage, or as workshop leaders, during each and every day!

This particular presentation was based on a study that was conducted within the scope of a master’s thesis project at Uppsala University by Sara Englund and Anastasia Hansman. The project focused on the Swedish patient accessible electronic health record system Journalen (and hence was tightly connected to the DOME consortium) and more specifically on how nurses see that Journalen has affected their work environment and their communication with patients.

The result of the semi-structured interviews conducted with the nurses at a primary care center in Region Uppsala, first of all showed similar as our earlier interviews with physicians – Journalen has changed the interaction with patients, created an increased workload and created uncertainty regarding when to inform patients of results now that the patients can read even unsigned notes. Even though most of the results were in line with results from our earlier research in DOME, one new theme arose from the interview analysis – the need for new knowledge. Several nurses indicated that education was needed, focusing on how Journalen should be used both by patients and in the clinician-patient relationship. This is an important result, which should be taken very seriously.

All conference papers are published open access, so you can find all research presented at MIE here. You can find the paper that Åsa and I presented here.

Stay tuned for more posts about the HTO activities at MIE/Vitalis 2018! 🙂

Cognition in the Wild – Halfway PhD Seminar by Rebecca Andreasson

Rebecca Andreasson from the Department of Information Technology, Uppsala University, held her halfway seminar this week. She did an excellent presentation and many from the HTO group were there and listened to the presentation and discussion with Professor Henrik Artman from KTH. Rebecca started off her presentation with a description of what her papers included in her thesis have in common. The questions that she is addressing in her work are:

  • How do humans accomplish daily work activities in complex work environments?
    • How do we use tools and artefacts in practice?
    • How do we coordinate internal (memory, attention etc.) and external structures (tools, computers etc.) to accomplish a task?
  • How can workers be supported in their execution of tasks? 

Rebecca’s work is based on the theoretical framework of Distributed Cognition (DCog), introduced by Ed Hutchins, which emphasizes that thinking/cognition does not take place in isolation, but is the result of the interactions between the human, and his/her social, physical and cultural environment. All elements of the cognitive system are considered equally important.

Rebecca identifies four of her (numerous) publications as the foundation for her continuing work towards a PhD. :

  1. A study on interruption handling at an assembly line in a manufacturing company:
    Andreasson, R., Lindblom, J., & Thorvald, P. (2017). Interruptions in the wild: Portraying the handling of interruptions in manufacturing from a distributed cognition lens. Cognition, Technology & Work, 19(1), 85-108.
  2. A study on collaboration and tool use in dock assembly:
    Andreasson, R., Lindblom, J., & Thorvald, P. (2017). Tool use and collaborative work of dock assembly in practice. Special Issue in Production and Manufacturing Research, 5(1), 164-190.
  3. A study on the need for a system perspective in railway HF:
    Andreasson, R., Jansson, A. A., & Lindblom, J. (accepted for publication). Past and future challenges for railway research and the role of a systems perspective. To be published in Proceedings of the 20th Congress of the International Ergonomics Association. August 26-30, Florence, Italy.
  4. A study on coordinating activities in operational railway traffic:
    Andreasson, R., Jansson, A. A., & Lindblom, J. (under review). The coordination between train traffic controllers and train drivers: a distributed cognition perspective on railway. Cognition, Technology & Work.

Rebecca’s overall aim, in her own words, is to: enhance the understanding of the distributed work practices of cognitive cooperative work and to explore the interaction between human beings, tools, and technology in complex work settings where the theoretical framework of DCog has previously not been applied in depth.

Her contribution to the field, thus far, is the ethnographically founded descriptions of real work practices in real work situations and the application of DCog to new domains of complex work. This includes creating new concepts as well as complementing on existing concepts. She introduces DCog to the theoretical “toolbox” of Human Factors and Ergonomics (HF&E) research.

Her ideas for the future are:

  • To investigate how the results of a DCog analysis could be used to (re)design a socio-technical system through workshops and/or vision seminars with examples from real situations (based on the DCog analysis made).
  • To provide a structured “how-to” method for DCog users through analysis of comparison of current DCog methods (e.g. by analysing the same empirical material with the use of multiple DCog methods) and iteratively developing and validating a new (or modified) method. A final validation could potentially be done with students or practitioners in a HF&E domain.

With this account of her research and progress so far, Rebecca finished her presentation and the seminar continued with a critical discussion by invited guest Henrik Artman from KTH. Overall, Henrik was quite impressed and opened the discussion by relating that in his experience Rebecca is already way ahead of the halfway mark for her PhD. He then guided the discussion into the details of the foundation Rebecca has laid and suggestions on  how to strengthen it in Rebecca’s final sprint towards her PhD.

With such an impressive start, we certainly look forward to seeing what Rebecca will have achieved and contributed with to the field when it is time for her dissertation a few years from now!

Physicians, Patients and the Patient-Accessible EHR

Christiane presenting her draft of her doctoral thesis on April 17, 2018

Christiane Grünloh, one of the members of our research group, will soon be defending her PhD thesis. Last week, it was time for her to present a draft of her work, which she plans to defend by the end of the year. I jump on the opportunity to write of few lines on her research, which revolves around the Patient-Accessible Electronic Health Record online.

Christiane is one of the researchers of the DOME Consortium, working on the Development of Online Medical records and E-health services. She has been focusing on investigating the perspective of, respectively, physicians and patients on the EHR online – “Journalen” in Swedish. Research about this topic is particularly important since the implementation of Journalen in Sweden has been a very controversial project. Indeed, while patient organizations predominantly were in its favour, caring professionals were, for the most part, against it.

In her research, Christiane was able to look more closely at the reasons behind physicians’ strong opposition to the idea of enabling patients to access their EHR online. She was also able to investigate what was the value of this service from the patients’ point of view. In doing so, she found that physicians and patients had very different perspectives on the topic, and reflected on ways to bridge the gap between those two groups in order to improve the quality of the patient-physician relationship.

You can find Christiane on Twitter (where she is a very active user!) and LinkedIn. If you were attending the Vitalis / MIE 2018 conference in Gothenburg, you maybe also were able to attend her workshop on “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer”, which she is held together with Jonas Moll, Isabella Scandurra and Åsa Cajander last Thursday.