eHealth · Medical Records Online · Summer school

Preparing for the second week of the eHealth summer school

KTH

During the last week of June I wrote a series of blog posts about an eHealth summer school I participated in, together with some colleagues from Uppsala University and KTH as well as several other Ph.D. students and postdocs from around the world. That week of activities, which we spent at Trinity College Dublin, was very well organized and I’m very glad I got the opportunity to be there and experience every part of it. You can read about the content and my experiences of it in these blog posts:

Now, we are approaching the second week of the summer school, which will be held in Stockholm (KTH) and Uppsala (Uppsala University). I’m really excited about getting to meet everyone again and experience a new week filled with interesting lectures and exercises! During the last day of the week in Dublin the organizers of the second week – Jan Gulliksen and Åsa Cajander – presented the plan for the week in Stockholm (you can read a summary of that presentation if you follow the link to Day 5 above). We got two small tasks to work with during the summer:

  1. Come up with a citation of our own work, as a means of illustrating how we want other researchers to cite us.
  2. Prepare a Pecha Kucha (using a template), presenting ourselves as researchers, our research, the citation from 1) and a kind of personal fun fact.

Today, I have been working with those two tasks. Coming up with the citation was certainly not easy, since I have been working in quite a lot of fields. But since everything I do relate to mediated communication and a rather special analysis technique (focusing on how technology affects the means by which we talk to each other) I settled for a citation related to how the methodology I have been using can be applied by others. I will not show the citation here – everything will be revealed during the first day in Stockholm! 🙂

Preparing the Pecha Kucha was also quite hard due to my many research areas. My first idea was to focus entirely on eHealth (since this is an eHealth school), but that would give far from a complete picture of what I’m doing as a researcher. I will instead try to browse through all three of my main areas multimodal communication, eHealth and social media in higher education. I’m really looking forward to see the other participants’ presentations. We will all present just before lunch during the first day in Stockholm.

Preparing the two small tasks mentioned above is not the only thing I need to do before the second week of the summer school starts. During the Tuesday, which we will spend in Uppsala, I will be one of the speakers! I will present and discuss the results from the national patient survey (a short version of that presentation was held at the Vitalis presentation last spring, see this blog post). It will definitely be an interesting experience to be a speaker as well as a participant. Christiane Grünloh, my colleague from KTH, has the same situation – she will, together with Åsa Cajander, present and discuss the professionals’ perspective right before my presentation. During that same day in Uppsala there will also be presentations by medical professionals and other stake holders.

Another thing that was announced the last day in Dublin, during the presentation of the Stockholm week, was that the participants should help deciding what we should do the last two days in Stockholm. Those two days are still blank in the schedule so I guess the content will be revealed during the first day in Stockholm. I’m really looking forward to see what will happen there! Unfortunately, I did not think about it when the ideas for content were collected, but one very interesting activity could be a variant of the critical incident workshop that I wrote about here and here. I really enjoyed that workshop and many interesting ideas came out of it. Anyhow, the presentations and activities during the first three days seem really interesting, so I’m positive we will have two great final Days!

DOME · eHealth · Medical Records Online

Seminar about the history of patient accessible electronic health records in Sweden

A few months ago I participated in a very interesting session in the seminar series “Current challenges in biomedical information technology” at Uppsala University. The invited speaker was Benny Eklund, IT Strategist, Uppsala county council. Benny’s work and initiatives – starting about 20 years ago – is probably the main reason why we have patient accessible electronic health records in most county councils in Sweden today (the few ones remaining will allow access before we leave 2017). See link to the filmed presentation below!

Åsa Cajander, who has collaborated with Benny for years introduced him before he began his presentation. As she reveals in the introduction students in one of her courses, “IT in society” played a very important role when they, during one of the course rounds, investigated future possibilities for medical records online in Sweden (a topic provided by Benny). The students’ work resulted in a white paper, which was presented in Brussels! Their work certainly helped in attracting necessary funding.

During the session Benny talked mostly about the early history of patient accessible electronic health records in Sweden, like e.g. important decisions made, the many barriers encountered as well as identified enablers and functions included. After listening to the talk it became more clear to me than before that there were many bumps in the road towards the system in use today. I really recommend you to watch the video – I’m convinced that the barriers and enablers brought up to discussion are relevant in many other countries as well where similar systems have been or are about to be introduced.

Link to presentation

 

 

eHealth · Interact · conference

Paper on critical incidents and eHealth design accepted to Interact 2017!

Interact_accept

Months ago I wrote a blog post about a workshop at NordiCHI 2016, to which I submitted my first ever research contribution from the patient’s perspective. You can find the workshop position paper here. After that workshop the participants decided that we should continue our discussions and also do research together when possible. The first result of our collaboration, a short paper submitted to Interact 2017, has now been accepted for publication and presentation at the conference (was conditionally accepted about a month ago)!

Christiane Grünloh is the lead author of this paper, and the others are (in order) Jean Hallewell, Bridget Kane, Eunji Lee, Thomas Lind, Jonas Moll, Hanife Rexhepi and Isabella Scandurra. The title of the Interact paper is: “Using Critical Incidents in Workshops to Inform eHealth Design”.

The paper is focused on the workshop and especially on how this kind of workshop, gathering both researchers, practitioners and patients (me, in this case) who all contribute with a critical incident related to eHealth, can be used to generate ideas that can inform future eHealth design. More details about the format can be found in the paper when it’s published and in the blog post which I linked to above. Christiane will present the paper at the conference and it seems like the presentation (as well as most other presentations) will be broadcasted!

Here is the abstract, summarizing the main points:

Demands for technological solutions to address the variety of problems in healthcare have increased. The design of eHealth is challenging due to e.g. the complexity of the domain and the multitude of stakeholders involved. We describe a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. We propose the workshop format, which was used during a conference and found very helpful by the participants to identify possible implications for eHealth design, that can be applied in future projects. This new format shows promise to evaluate eHealth designs, to learn from patients’ real stories and case studies through retrospective meta-analyses, and to inform design through joint reflection of understandings about users’ needs and issues for designers.

 

 

eHealth · Summer school

EHealth summer school in Dublin, day 5

Today was the last day of the eHealth summer school in Dublin. The lectures, that were of high quality, were fewer today since the whole afternoon was devoted to the projects. This day also contained a talk about the second summer school week in Stockholm. 

My blog posts about the other days:

The three lectures focused on a depression intervention case study, implementation science and ethical design in eHealth. The case study concerned a depression intervention, gNAT’s Island, which started as a research project and is now used by over 1200 mental health professionals! Thus, this is clearly a case of implementation done right. The application, targeting children 10-16 years, comes in numerous variants and the core application is a game focusing on Cognitive Behavioural Therapy. Needless to say, good collaboration with all stakeholders involved was a prerequisite for the success. It must be very unusual that health professionals use a game as a part of the therapy! 

The implementation science lecture focused on real examples of where implementation had gone wrong – sadly enough quite a few can be found within healthcare. Poor design can have fatal consequences within this area! As many as 70% of systems in healthcare fail, often because of poor implementation. Many things are needed for successful implementation. It’s not enough that you have run a successful pilot trial – you also need to be able to scale up the solution, provide necessary training for care professionals (and maybe also patients), have continous evaluation (not just develop something and leave), etc. 

In the talk about ethical design a rather unusual interactive component was used – the participants should fill in a 4×4 “Ethical Bingo” during the talk! As soon as a word on the Bingo card was mentioned by the speaker, Marguerite Barry, it should be marked. There were no prices, but it was an interesting way to keep the audience alert. Among other things, the talk showed how the view of ethics in design has evolved through the years and how to apply wisdom in design. The presented view on ethical design was very interesting, since most discussions about ethics focus on privacy, data protection and similar. 

The entite afternoon was devoted to the projects. Directly after lunch we got 1,5 hours to prepare a 8 minutes presentation which should contain the elements covered during the project sessions the earlier days:

  • A user scenario introducing the intervention and giving it a clear context
  • The user-centered design process and methods
  • The trial protocol proposed for evaluating the intervention

After a coffee break every project was presented with minimal gaps in between (just pauses for switching computers) and then the jury chose a winning team. Before the jury presented their decision the patient representatives got a chance to talk and they were all very pleased with the results and that they had gotten the opportunity to be a part of the summer school. Apparantly, this is the first time patients have been invited to this kind of summer school. 

This last paragraph about (this week of) the summer school relates to the blog post picture. Jan Gulliksen and Åsa Cajander presented, as organizers for the Stockholm week, what would happen during the second summer school week in August. This time we were asked to prepare 6 slides for a Pecha Kucha during the first day in Stockholm! Parts of that day will focus on the participants getting to know each other a little better. The second day we will be in Uppsala and one of my tasks will be to make sure that everyone gets there in the morning and home again in the evening! Medical practitioners will be among the speakers this day. I was really happy to see that we will have a full day workshop in the very cool visualization studio! I have actually never performed any research tasks in that room despoter the fact that I worked at KTH for years. It will be interesting to find out what will happen during the last two days – the participants was asked to write down ideas for possible themes on post-its and hand them in just before lunch. The week in Dublin has been great and I’m sure we will have a super week in Stockholm/Uppsala as well!

eHealth · Summer school

EHealth summer school in Dublin, day 4

The fourth day of the eHealth summer school in Dublin included lectures related to inclusive design, internet interventions, trial protocol design and healthcare implementations. As has been the case the earlier days, I found all lectures interesting and I also enjoyed the interactive parts that were included in them. As before, I will bring up a few key points below. 

This was the first day where we got the chance to work on our projects during one of the lectures. During the lecture on inclusive design, we should try to come up with ways to extend our current ideas so that they could be of use for people with multipel illnesses/disabilities – thus we should design for a so called persona spectrum. This part was very interesting for me since I have designed haptic interfaces for collaboration between sighted and visually impaired pupils in elementary school. With this background I have been forced to think about inclusive design and the importance of designing both haptic and audio feedback in a way that provides both collaborating peers with a truly shared workspace. 

Once again Geraldine Fitzpatrick held a very inspiring lecture. The focus this time was more on eHealth design and the importance of gaining insights from involving different stakeholders in the design process. When the picture for this blog post was taken she brought up the idea of using e.g. health coaches in interaction with patients/users. Many other techniques, like home visits/observations and interviews were also mentioned. It is vital that we as researchers and/or designers get to know how technology is really used and this is insights that e.g. care professionals could never provide (the use context is often the patient’s home). One key point was that it is important to invite users continously during the design process and thereby building a kind of relationship with them. 

Heleen Riper’s lectures on interventions and protocols were also interesting – I had no idea that there are approximately 8000 apps for depression interventions available today! Many different examples of interventions were given, including VR environments for targeting different phobias. The importance of basing interventions on scientific evidence was also brought up and during this part of the lecture Heleen approached members of the audience who had to give their views on methods (e.g. meta studies and trials) for gathering such evidence. This was a very good way of keeping the audience active and focused. The same technique was used during the lecture on trial protocols. The last lecture of the day, on healthcare implementation, also included a lot of interactive parts. In that case the speakers wanted to show that we have limited capabilities and that it’s human to misinterpret things and make errors. Several small experiments on perception and multitasking were performed. 

The main project part (as I said above, there was a short workshop on inclusive design during a lecture) was about trial protocol planning. Thus, we should come up with ways to measure if the intervention we designed have the intended effects. We should both come up with a distal outcome (and means of measurkng it) and proximal outcomes for each intervention component. The end result was a study design capable of evaluating the intervention. 

eHealth · Summer school

EHealth summer school in Dublin, day 3

The third day of the summer school was also very rewarding, with many inspirational lectures and interesting discussion topics. Even though no specific themes were announced in the program, most of today’s content was focused on methods and eHealth research in general. As before, I pick a few of the highlights from the day, which I write about below. 

This day a new interactive method was used – Jan Gulliksen (see picture above) used Mentimeter in his inspirational talk about motives for conducting research and how to look at and measure contributions. According to the results from the Mentimeter activity, about 75% of the participants wanted an academic career and the reason most of us had for conducting research was to contribute new knowledge to the world. In the beginning of the talk, we also got the task of writing down an example of how we want other researchers to cite our work. This really made me reflect on what my main contribution is and how it is framed in e.g. my thesis! 

Another inspirational talk, by Geraldine Fitzpatrick, focused on putting eHealth in a context. The talk focused a lot on the complexity that eHealth researchers and developers need to cope with – many different stakeholders (far more than just doctors, nurses and patients) and disciplines/needs involved. Several stakeholders, like insurance companies, government, etc are also found outside the hospital. Everyone has to be taken into account when designing something that is going to be a part of a very complex eco-system – a system that designers often simplify too much. Plus, new systems in this domain (and other domains also, of course) often bring about changes in work roles and how jobs are performed – changes that often directly effect the contact between patients and care professionals. Several interesting examples of problems that implemented eHealth solutions can cause, due to the context of use not being properly analyzed, were also given. The talk began with an open question about how the participants thought about eHealth in relation to context. Mostly one-word answers were given. When the same question was asked in the end, a lot more reasoning answers were given!

There were only two other lectures this day, about evaluation methods (focus on experimental trials) and medical device safety. I recognized most of the experimental methods presented, so for me the method walkthrough was more of a repetition. More than half of the studies I have conducted during my Ph.D studies and thereafter have been based on experiments. The talk on safety focused e.g. on incidents and causes of errors. Errors often occur when the technology does not fit the work process. Everyone can make errors (care professionals also – it’s human) and we have to take this into account when designing new systems. 

Today’s project work conserned the user-centered planning process. As it turned out the paper Key Principles for User-Centred Systems Design, with among others Jan Gulliksen and Åsa Cajander as authors, was used as material! We should first map out the user-centered project process using the “key principles” as inspiration. Thereafter we chose methods and in the last phase we tried to identify some “tensions” (e.g. potential problems and possibilities of moving across national boundaries or involving indirect stakeholders). 

eHealth · Summer school

EHealth summer school in Dublin, day 2


The second day of the Dublin part of the eHealth summer school has soon come to an end. Even this day was interesting and eventful. Several case studies were presented, focusing on e.g. depression interventions, behavioural change, user-centered design and patients in self-care. Today, there was more focus on what makes an intervention/an eHealth project successful and what hoppens when the project (and the external funding) runs out. 

One particular example brought up was SilverCloud, a kind of online-intervention for e.g. depression and anxiety. A long and complex project resulted in the solution in use today. You really have to consider the diversity of users here – social and cultural backgrounds have to be taken into account. It is also hard to attract funds for such large projects and a hard part is also (not only for this project, of course) that technology is constantly being upgraded. The latter is a real issue when it comes to using an intervention after a project has ended (funding needed for upgrades may not be there). SilverCloud is one example of an intervention which is successful in that it is still in use after the research project has ended (now deployed by a company). Read more about the case by following the link given above. 

Another example of a case study was FeedFinder, an app which is used to find suitable breastfeeding locations. You can see detailed information about this eHealth solution by following the link. One of the interesting lessons learned in this case was that the turnout would probably have been better if the solution had been integrated into public health services. I think this is a problem that many similar solutions are struggling with – you have an app which solves a particular problem in a feasable way, but the solution is stand-alone, separate from e.g. the national healthcare platform. 

As was the case yesterday we also had quite a few group discussions and project work. E.g. we discussed how to design interventions with the purpose of changing behaviour, experiences (from the patient’s perspective) of searching for information about a health condition online and “the new normal” that a change in health status results in. In the latter case I e.g. described that I’m much more careful, and somewhat afraid of being in crowded places, after I was diagnosed with a rheumatical disease and got immune suppressive medication. 

The last session focused on how to build business models and this was also the focus of the project work. We should most and foremost clearly define the problem, the main goals, the customers and the users. The model we were to use was not only applicable when trying to pitch a solution to potential funders/stakeholders, but also very much applicable when writing research grant applications! I will definitely come back to this in later blog posts. 

Last, we also got the possibility to visit Old Library at Trinity College, just before lunch. We saw, among other old books, the Book of Kells. I took the picture above in the magnificent Long Room on the uppger floor!