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.

Announcing new course ”Complex IT Systems in Large Organizations”

This term, Åsa and I are giving, for the very first time, a course titled “Complex IT Systems in Large Organizations”. The aim of this course is to familiarize Computer Science students with the real-life complexity of buying, designing, implementing and maintaining IT systems in large organizations. Our wish is above all to increase students’ awareness for the main issues specific to each one of these processes and to make them acquainted with some of the problem-solving strategies used by practitioners today in order to overcome them. We have chosen to expose them to three different professional domains: healthcare, administrative bodies and private companies.

Our course concept revolves around students’ interviewing practitioners from each domain working with one or several of the processes mentioned above. In addition to the interview itself, the students’ task will be to summarize their findings into a brief written report accompanied with a short film. This material will then be shared between course participants in order to enable each student to learn about all the different domains and processes covered by the course.

We are currently looking for practitioners within healthcare, administration and private companies willing to be interviewed by our students, and hope that our project will stir interest among those different communities. Better preparing students to the intricacies of IT management in large organizations through making them benefit from lessons learned by more experienced practitioners is crucial if we want to improve the way IT systems are being handled – at all levels – in those big and complex organizations.

Doctoral defense in Vienna

A time for celebration!

Last Tuesday, Åsa Cajander and I attended the defense of Jean Hallewell Haslwanter’s excellent doctoral thesis. Her work digs into the issues development teams encounter when designing sensor-based monitoring systems aimed at older people, and she uses the problems she identifies to formulate recommendations for both development teams and funding agencies. As such, it is a very relevant read for anybody directly or indirectly working with design and software development projects, even if those are based on other types of technologies.

The defense took place in central Vienna, at the Institute for design and assessment of technology of the Technische Universität Wien (TU Wien). Åsa was one of the thesis’ two examiners, along with Klaus Miesenberger (Johannes Kepler University Linz). Interestingly, the defense proceedings were a bit different from the routines I have seen so far in Sweden. The event was quite short (about 1 ½ hour against the 2 ½ – 3 hours I was accustomed to), and no opponent had been called in. Instead, Jean presented her work during the first 45 minutes – she did a really great job, giving a very concise but clear and to-the-point overview of her research – after which the members of the examination committee and Jean’s supervisor, Geraldine Fitzpatrick, proceeded to ask her some questions. Finally, following the committee’s deliberation session, Jean went back into the room alone to get the notice of the successful outcome of the defense, while this generally takes place in public in Sweden.

The lovely post-defense celebration led to very fruitful exchanges of ideas (at least from my perspective, since I received some very good research tips from Toni Michel!), and I was very happy I had made the trip to Vienna – in spite of the cumulated 4 ½ hours of flight it required! It was a real pleasure to meet Jean and her colleagues, and I very much enjoyed the experience!

IT and Society class: first try at a crash course in interviewing

Since the beginning of the term, I have been involved in a class called “IT and Society” as a teaching assistant. The class is the product of a collaboration between Åsa Cajander and Mats Daniels at Uppsala University and Cary Laxer at the Rose-Hulman Institute of Technology in the United States (IN). It differs significantly from other courses at Uppsala University in that it revolves around a real-life issue provided by an external client (the EPJ department in Uppsala County) and, maybe most importantly, gives the lead to the students. (I invite you to check out this post by Åsa if you are interested in knowing more about what makes the course special. Mats Daniels has also been blogging about the class – you can find his latest post on the subject here.) Those are indeed expected to work together in an autonomous fashion throughout the whole course, from deciding on how to structure the project and distribute the work among them to delivering a formal project report to the client. The role of the teachers and mine as a teaching assistant is thus first and foremost to provide students with the means to work in such an autonomous way and offer them some guidance and support when and where they need it.

This year’s class is dedicated to investigating different aspects related to the tracking of people and equipment within and outside of the hospital, and is expected to result in a systems definition report. Next week, the students studying in Uppsala will be given the opportunity to go and interview different healthcare professionals at the University Hospital in Uppsala in order to gather additional information on the topic, as they now have been working on the project for several weeks. As a way to help them in tackling the challenge of conducting successful interviews, it was decided at the beginning of the course that I would hold a two-hour crash course in interviewing for the Uppsala students. Last Wednesday, the D-day had arrived.

As I attended an excellent daylong workshop on qualitative interviewing during a Summer school at Kingston University earlier this year, I decided to try and emulate some of this workshop’s activities with my students. I thus had them create a short interview schedule (about a fictional topic) and conduct a live interviewing experiment. Ida (Löscher, a fellow HTO group member) kindly accepted to come by and play the role of the interviewee, while one of the students volunteered to be the interviewer, and another slid into the shoes of the note-taker. The remaining students and I settled into the role of the observer. Once the mock interview was terminated by the interviewer, I asked both interviewee and interviewer to share their experience with the group: how did they think it had gone? How had they felt? What did they think was good, and what did they think could be improved? This opened a short debriefing session during which each participant came to word – either to make comment or to ask a question. I then wrapped up the course talking briefly about the analysis and reporting of interviews, a topic Åsa had wished for me to take up with the students.

It is of course hard to say whether this small crash course will be effective in helping students making the most of the interview opportunities they have been provided with (especially since everything did not go as smootly as I hoped…). However, I strongly believe that experiencing and reflecting on a real-life interview, even staged, can be very helpful in order to understand what interviewing is all about – what makes it so challenging, and what tips and tricks can help. In any case, I hope that the students have appreciated the experience and will enjoy conducting their upcoming interviews.

Seminar on the ethical handling of field research data

Last Monday, I held a seminar on “the ethical handling of field research data”. There are indeed many laws and regulations researchers need to follow when collecting, processing, publishing and preserving research data. In Sweden, the requirements related to good record keeping in public institutions are particularly high since the principle of public access to official documents applies. This is why I decided to prepare a seminar on this particular topic as my examination in the Research Ethics course I took last month at BMC.

Following Åsa’s recommendation, I decided to do an interaction-based seminar instead of holding a more “traditional” presentation. In my preparation, I determined the topics I was interested in and wanted to include in the seminar, and gathered information about each of them.  In the PowerPoint presentation I created for the seminar, I then added a few slides per topic. During the seminar itself, I started off by explaining to my audience which topics I had worked on, and asked them what aspects they were interested in talking about, or whether they had any question related to the topics I had prepared. They mentioned the three following questions of interest:

  • Can I take my data with me when I leave the University? Whom do the data belong to, and what does that imply for informed consent?
  • Video recordings: what do I need to pay attention to when handling such data?
  • What if I have messed up (lost my data, not submitted an application for ethical review, did not ask participants for consent)?

I addressed each topic one after the other, first giving some input with the support of the relevant slides from my PowerPoint presentation, then asking the audience for additions, examples and possibly other related questions. The discussions that each topic / question gave rise to were animated and thought-provoking, and always led to the generation of more questions than what we had started with! In spite of this, it seems that, based on the feedback I received later from some of the participants, the opportunity to discuss and reflect over those different ethical aspects of research was appreciated.

As for myself, I really enjoyed giving the seminar, and feel like I have learned quite a few things on the subject – even if one of them is that the legal framework we work with is difficult to put into practice. One of the main challenges I see is that it is hard to determine when a certain condition is fulfilled in practice. For example, is a so-called “working document” an official document? When does a document become official? Unfortunately, the fact that the interpretation of the different laws and guidelines that apply varies from institution to institution certainly does not make things easier…

A holistic perspective on designing for people: service design

During his short visit two weeks ago, José Abdelnour Nocera from the University of West London held a presentation on service design. I was very curious to learn more about the topic since it was a term I had stumbled upon not only throughout my Master’s studies in relation to user-centered design, but also in countless job advertisements back when I was looking for work in the industry. I had always wondered in what way service design differed from “traditional” user-centered design, and whether my skills as a user-centered interaction designer could be extrapolated to the field of service design.

As I have understood it, the main difference between user-centered design as it is understood within human-computer interaction and service design resides in the concept of “service” as opposed to that of “product”. Service design aims at considering a product’s usage flow from a holistic perspective, from acquisition of the product (and corresponding service) to “liquidation” or end of service subscription. The product is seen as only one mean to access the service, as a mediator between the user and the service – and one that only gets its value from the service it grants access to. One of José’s examples I found very telling is that of Apple’s iPod: when one buys an iPod, one does not buy it because the device in itself is better than other MP3-players on the market, but rather because it enables us to enjoy iTunes’ offers. The iPod’s value thus does not reside in the device itself, but in the service it is associated with – the cheap and almost unlimited access to music through the iTunes store.

An interaction designer would focus on how a product is to be used, answering such questions as: what are the features the user needs, what does the user need to be able to do with the device? How will she interact with and control the device? However, a service designer would take a much broader perspective and seek to answers questions such as: how will the user learn about the product and the corresponding service? How will she set-up the device and activate the service? How will she routinely access the service? And even, how will the user terminate the service / get rid of the device?

Service design is not new and re-use many different concepts from other fields, most notably user-centered design and system design. Nonetheless, I appreciated seeing how a more holistic approach can lead to the creation of a better user experience that is not limited to the use of a product, but which comprises everything that is related to it (informing oneself about the product, getting familiar with it etc.). Service design fundamentally consists in taking a step back and considering the prerequisites and context of use of a product, a mindset that I think may be helpful in many other domains as well, including healthcare.

Presenting the DISA project at Vitalis 2017!

Earlier today, Ida and I presented the DISA project at Vitalis 2017. The project is dedicated to investigating the effects of digitization on nurses’ work environment. The outline of the project is described in the leaflet shown above, which can be downloaded here.

DISA will be ongoing for three years and comprises three different work packages, each with a slightly different focus. The poster shown below illustrates the structure of the DISA project and provides some more detail on the project’s core research questions.

We are altogether 7 researchers working on DISA under Åsa’s supervision. However, not all of us work on the same topics and with the same hospital departments. As such, Jonas and Christiane mainly work with the EPR online and the oncology department at the Uppsala University Hospital, while Lars, Ida, Gerolf, Minna and me primarily work with nurses’ digital work environment and two different hospital departments: the surgery department at the Uppsala University Hospital and the department for blood and tumor diseases at the Uppsala Children’s hospital.

 

Value-based care at the Uppsala University Hospital

Last Friday, Ida, Gerolf and I had a very instructive and thought-provoking meeting with one of the team members working on value-based care at the Uppsala University Hospital. The hospital is indeed in the process of optimizing its care-delivery processes in order to provide patients with both a better experience with hospital-based treatments and a higher quality of care. This relatively new, international “value-based” approach has its origins in the realization that hospital-based care processes lack efficiency and, from a patient perspective, objective ways to evaluate their quality. Statistics frequently used to assess the quality of the provided care include for example the number and the length of hospital visits, which the value-based approach argues are not actually representative of quality. More meaningful quality factors from a patient-centered perspective include for example how the patient feels, how quickly a diagnosis is established or whether the treatment is effective (whether the symptoms are effectively reduced by the treatment). As such, the value-based care optimization process aims to achieve quality in terms of patient-centered factors as well as provide valid measurements for the different factors taken into account, i.e. make it possible to evaluate the achieved quality level from a patient perspective. To carry out this high-level optimization process, the value-based care team at the Uppsala University Hospital is working together with inter-department groups of clinicians, for example in the form of workshops, in order to model the existing care flows and identify ways they can be improved as well as meaningful evaluation measurements.

Although those high-level organizational changes are beyond the scope of the DISA-project, it was important for us to get an insight into this change process currently taking place at the Uppsala University Hospital. Those workflow changes may indeed influence the documentation procedures (most of which are carried out digitally), and a good understanding of those procedures, their context and their purpose is essential in order to be able to interpret correctly what we will hear and observe while out in the field throughout the project.

Personally, I wonder whether a similar optimization could be applied to the doctors and nurses’ digital work environment. However, if patient-centered quality factors are relatively easy to come up with, the task is more complex when it comes to digital, nurse-centered processes. When it comes to computer-mediated documentation and, more generally, care delivery, what is quality? How can we assess and ensure that the existing digital workflows support nurses’ efficiency and well-being? I really hope that our work within the DISA-project will make it possible for us to answer those questions.

First observation day, part 3: challenges

In my two last blog posts, I wrote about some of the positive aspects of participant observation I experienced during my first day out on the field as a researcher. I am now closing this short series of posts by addressing the side of this kind of observation I felt was more challenging:

  • The frustration of not understanding everything at once. There is something exhilarating about being immersed in a work environment that outsiders seldom get to experience and uncovering new knowledge about the work practice under focus. However, not everything one observes can be correctly understood or interpreted at once (especially when one is new to the domain of interest). Throughout this first day, I was thus often left wondering what the medical staff were doing and why they were doing it. I did not always get the opportunity to ask about what I had seen and when I did, it generally was some time after the observation of the specific event I had questions about. As such, I discovered that if I wanted to be successful as an observer, I needed to learn to be patient and accept that I might have to wait some time – maybe even until another observation day – before getting the answers to my interrogations.
  • The “behave as if I weren’t there” awkwardness. I was at times uneasy in my observer role, and struggled to find a way to observe that did not feel like I was “stalking” the nursing staff. Not knowing whether they felt comfortable with my watching over their shoulder (which I sometimes needed to do), I started to feel quite self-conscious about my being there. I was worried about my presence being distracting or even annoying to the people observed, something I of course absolutely wanted to avoid. I did not ask about how the situation made them feel at the end of my shift – should I have dared to? – but do wonder whether they thought the situation was as awkward as I felt it was…
  • Staying focused on the activities of relevance. A few times throughout the day, I let myself get distracted by events happening in the room that were not actually part of the scope of my research. For instance, I once became so entranced with the patient’s post-operative care that the operating nurse had to actually tap my shoulder in order to call my attention to the fact that she was going to start documenting the procedure…
  • Staying emotionally detached. Working within healthcare, it is obvious that one will be confronted to difficult circumstances, and it seems only normal to be touched and feel empathy for the people involved. However, it is at the same time important to develop strategies in order to keep a healthy emotional distance from the patients and nursing staff. This is necessary in order not only to do good work, but also to protect oneself and make sure that working out on the field does not negatively affect one’s own life. That being said, I found it very hard not to let myself become overly emotional over the situations I was witnessing during my observation day. This is something I feel I really need to work more on until my next day out on the field.

First observation day, part 2: the perks of immersion

When it comes to analyzing work practice, I have found that one of the main challenges for the researcher is to learn to “speak the language” of the observed population. The researcher needs to develop an understanding for those aspects of the work practice that practitioners don’t explicitly mention, but which nonetheless are a significant part of their work and work environment. The problem is that the more experience we have with doing something, the more difficult it becomes to verbalize how we go about doing it. In addition, many work environment factors are simply difficult to put into words.

Observation provides, to a certain extent, a solution to that problem as it makes it unnecessary for the observed individuals to verbalize every aspect of their work. Until recently, my experience with observation within healthcare was limited to watching video recordings of emergency medical interventions and a live streaming of an open-heart surgery. Those instances provided me with a basic understanding of the workflow of an operation and the specific role taken on by each clinician involved in the intervention. However, I realized during my observation day at the Department of Pediatric Surgery that I had overlooked several essential factors specific to the work environment of clinical nurses. This realization came from the fact that for the first time, I wasn´t an outsider looking in any more, but immersed in the work environment I wanted to learn about. This made for a very different, and instructive, experience.

Here are the different “perks” I have identified in relation to my immersion into nurses’ work environment:

  • More than just a clinical understanding for nurses’ work environment, I got an insight into the “feeling” of it. By wearing the same clothes, sharing the same space and following the same daily routine as nurses, I was able to experience, albeit to a limited degree, how it feels like to be a nurse. This led to my uncovering aspects of the work environment I had not thought of so far.
  • Being a participant observer, I felt that I disposed of a higher degree of freedom when it came to deciding what to focus on. I was able to move freely within the operation theatre (being of course careful not to be in anyone’s way in order not to disrupt anybody’s workflow) and could choose what and whom to focus my attention on. While it is the camera’s positioning that determines and limits the field of vision on a video recording, immersion makes it possible to continuously change observation angle and thus to look at anything that catches one’s attention.
  • In contrast to my previous experiences with video recordings, where one generally only has access to a specific sequence of the work practice of interest, I got a much more complete picture of the workflow this time around. Being there for a whole day, I was able to see not only how an operation unfolds, but also, among other things, how an operation theatre is prepared, how nurses are made aware that the operation is about to begin as well as what happens in the operation theatre once the patient has left. This gave me a better and more accurate understanding of the context in which operations take place at a hospital.

In my next and last blog post within this short series of posts about my first experience as a participant observer, I will address a few aspects that I felt were a bit more challenging in regard with being out on the field.