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.

First observation day, part 1: facilitating interactions

Last week, I had my first observation day at the Uppsala University Hospital, more specifically at the Department of Pediatric Surgery. After introducing myself to the nursing staff attending the morning briefing, I was invited to spend the next few hours in company of an operating nurse and an assistant nurse working in tandem in one of the department’s operation theatres. The purpose of this observation day was not to formally collect data for a study, but rather to familiarize myself a bit more with nurses’ work environment in preparation for the DISA project. This first experience as an observer has led me to reflect on different aspects related to being out on the field as a researcher. I thus thought that I would write a short series of blog posts to share those reflections with you. This first post within the series is dedicated to interactions between researcher and members of the “target population” – and how I feel that observation facilitates this kind of exchanges.

Throughout my observation day, what struck me the most was probably how easy it was to interact with the nurses present – how friendly and open they were to my being there, and how naturally exchanges and conversations took place, even at unexpected moments.  For instance, an anesthetic nurse told me about a problematic aspect of using multiple digital systems while quickly fetching a cup of tea in the personal lounge, and another nurse expressed how energy consuming the introduction of a new system was while passing me in the corridor. Coffee breaks and downtimes during operations (for example while waiting for lab test results) were opportunities for longer conversations with the operating nurse and the assistant nurse I was paired with. During those conversations, I was even able to ask specific questions about what I had seen or heard, which gave me a more accurate understanding of how nurses use and experience IT systems in their daily working life.

As such, I realized that a very significant advantage of being an observer was that I was making myself available to the department´s nurses on their own terms. While interviews typically require participants to come and talk to the interviewer at a specific time and during a pre-determined duration, observation lets them free to choose whether they want to interact with the researcher. If they are willing to do so, they can do it knowing that they are the ones choosing what the conversation is about and how long it lasts, being free to interrupt the discussion and resume their work at any moment. I felt that this was a sort of “win-win” situation for the nurses and I, as they had the possibility to tell me about the aspects of their work with digital systems that they felt were significant without additional stress or constraints while I was able to get an in-depth insight into their work and work environment.

In my next post, I will address another aspect of observation that I experienced as particularly positive: the immersion into the work environment.