Academic writing · conference · DOME · eHealth · Grant application · Human-Computer Interaction · Medical Records Online · National patient survey · Pedagogy · Social media in higher education

Looking back at my two years as a postdoc at Uppsala University, part 1: research

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Since my two years as a postdoc at Uppsala University ended September 28, I will try to summarize my results and experiences in a few blog posts before this year ends. I will start today by writing about my research activities. I took the blog picture during my last birdwatching trip to Öland.

Even though most of my research activities during the postdoc period were focused on eHealth, I also did some work related to multimodal communication and pedagogy. Thus, I was active within all of my main research fields. In total, I got one journal article published, two journal articles accepted, one book chapter published and 11 conference papers published. I also attended nine conferences and submitted two research grant applications as main applicant.

Research within eHealth

Within this field I led two major studies related to patient accessible electronic health records (PAEHRs). The interview/observation/survey study at Uppsala University Hospital, which I introduce here, focuses on the effect of PAEHRs on physicians’ and nurses’ work environment. The survey part is completed and a journal manuscript, written by me and Åsa Cajander, was submitted to Health Informatics Journal slightly after my postdoc period had ended. The results are really interesting and I will of course get back to them when the article has been published. Due to some health issues and logistical difficulties, we have only conducted about half of the planned interviews with physicians and nurses, but we will hopefully get the majority of the remaining ones during the first months of the spring term. The analysis of the already performed physician interviews are still ongoing, and it’s very clear that the material that we already have will give many new insights into long-term effect of PAEHR on the work environment of healthcare professionals. This has really been an interesting study and it was also the first study for which I got the opportunity to write an ethical application. It has also been quite a challenge to coordinate the work with nine colleagues from five different universities.

The other major study I was leading was the national patient survey, which I introduce here. I have written about it many times on this blog since it has resulted in several scientific publications as well as presentations. Even in this case, one of the toughest challenges has been to coordinate the work in the distributed project team. This study has already resulted in one journal article and three conference papers and we are currently working with several journal article manuscripts which I will get back to later on. I really enjoy this study and I will keep working with it until everything is published. The study is very important since it’s the first major follow-up study on patients’ attitudes towards and experiences with PAEHRs.

During my time as a postdoc I also took part in the work with two research grant applications, as a co-applicant, within this research area. One of them was an EU grant application led by Meena Daivadanam at Karolinska University Hospital, with the title “The ENGAGE Trial: Improving and health societal outcomes for comorbid mental disorders associated with type 2 diabetes through an integrated support and engagement platform in Uganda and Sweden”. It was an interesting process with many Skype meetings (extremely early in the morning since one participant was in Australia) and a lot of interesting discussions. Unfortunately, we did not get the grant. As I understand it we were one point from getting it. The other research grant application concerned psychiatry records online. My DOME consortium colleague Gunilla Myreteg was the main applicant of this AFA insurances application focusing on implementation and short term effects of psychiatry records online in Region Uppsala. We did not get that grant either, but we are definitely not giving up!

I also attended several conferences related to eHealth during my postdoc period. I really enjoyed participating in and presenting at Vitalis 2017 and Vitalis/MIE (Medical Informatics Europe) 2018. There were so many interesting presentations and taking part in the 1.5 hours DOME arrangements was great! You can see my summary of the Vitalis 2017 version of the DOME session here. At Vitalis/MIE 2018 I was actually active with own presentations and a workshop during each of the three conference days, which was a little tiresome. You can read about that here. My very first conference experience during my postdoc was actually one of the most interesting ones, since I participated as a patient for the very first time! You can read about my contribution here. A few months later I actually got the opportunity to act as a patient once again – this time in a role play at the conference “EHealth in Norway Future Health”! That was a really interesting experience for me both from a patient’s and a researcher’s perspective. You can read about my experiences from this episode here. I really hope that I will get the chance to contribute to research from the patient’s perspective again!

 

Research within multimodal communication

My very few research activities within this subject area were mostly related to research grant applications. During spring 2017 I submitted a VR grant application, with five co-applicants from four universities in Sweden. The application focused on collaboration between deafblind and sighted pupils in a school setting, and more specifically on how multimodal learning environments can support this collaboration. Writing this grant application was a great learning experience! In the end, we did not get this grant but we still got good ratings (“Very good” on all aspects that related to the scientific content). You can read more about my experiences in this blog post. The other grant application was actually a draft which I submitted to Forte during spring 2018. It focused on multimodal learning environments for collaboration between sighted and visually impaired pupils. Unfortunately, the draft was not accepted. After the postdoc ended I wrote another application on this topic as main applicant, but I will cover that in another blog post.

I also got one journal article published in this research field, “Haptic feedback combined with movement sonification using a friction sound improves task performance in a virtual throwing task.” The article presents results from an experiment conducted at KTH right before my postdoc period began. The experiment was extensive and included eye-tracking and different combinations of haptic and audio feedback. I will write more about this study in a later blog post. A few conference papers on results from the eye-tracking analysis have also been published.

 

Research within pedagogy

I also conducted research related to pedagogy and more specifically on the effects of using social media as complementary communication channels in higher education courses. The most important thing I worked on was a short book chapter which was published in the book “Digitalisering av högre utbildning” [Digitalization of higher education] about a month before my postdoc ended. I really enjoyed working on this chapter, together with co-author Pernilla Josefsson, where I contribute with my experiences of using Twitter as one of the communication channels in a university course in engineering communication. This is my very first contribution to teacher education! You can read about the chapter, and find a link to the book, here.

We also contributed with a poster describing a later study on using a teacher-administrated Facebook-group as a complementary communication channel in a course in human-computer interaction. I will write more about this in my next blog post about my postdoc period, since the poster was based on work performed in a pedagogical course I took. Last, I collaborated with several authors when writing a conference paper about a critical incident from the 2017 version of a master course in human-computer interaction. You can read about the paper here.

conference · Popular science · Uppsala Health Summit

Uppsala Health Summit 2018, part 4: the conclusions

UHS_conclusions

This is my fourth and last post about this year’s version of Uppsala Health Summit, with the theme Care for cancer. I wrote the first three parts during the summer and now when the post-conference report, with the conclusions from the summit, is published it’s time to wrap up the blog series. Here are the links to the first three posts:

My original intention was to write separate blog posts about the different perspectives covered during the summit, but the post conference report (which you can find here) already covers all important aspects.

As I wrote in the earlier blog posts, the two days at Uppsala Health Summit gave me the best overall conference experience I have ever had. Researchers, healthcare professionals, industry representatives, policy makers and patients gathered in Uppsala Castle to discuss various aspects of cancer care and how to push forward in the area. The global perspective was one of the most interesting and important perspectives covered during the summit, at least as I see it. There are very clear differences in e.g. access to high quality care and diagnoses, national infrastructures and survival rates between high-income countries and low-/middle- income countries. The first chapter of the post-conference report, linked above, highlights this as well as other important aspects covered during the summit. The PPT presentations from the plenary speakers as well as the workshops, many of which you can download here, also give a very good overview of the most important aspects covered during the summit. Videos from the plenary sessions will also be available soon.

As I wrote in earlier posts on this subject, Åsa Cajander, Christiane Grünloh and I organized one of the workshops during the second day of the summit: “Using Data for Better Cancer Treatments”. Overall, I think the workshop was a success. In the beginning of the workshop each participant chose a table, representing the role s(he) wanted to focus on during the workshop. The roles were: patient, physician, nurse and researcher. After the groups had been formed, three of the participants presented critical incidents related to the workshop theme. These presentations had been prepared by participants that were recruited by the organizers a few months before the summit. The critical incidents, which covered the physician’s, patient’s and researcher’s perspective respectively, were meant to give inspirations for the upcoming workshop discussions. During the rest of the time before lunch, as well as during the lunch break, the groups discussed barriers and enablers, with regards to using data for cancer treatments. Some of the identified barriers included lack of infrastructure, fragmented data in silos and unclear rules for consent and usage. Enablers that the participants in many groups found important were improved access to mobile phones and networks, improved data storage possibilities and artificial intelligence.

After the lunch break our workshop speaker, Bengt Sandblad from our HTO group at Uppsala University, presented the ideas behind the vision seminar technique – the technique that was used during the next part of the workshop. You can see his presentation slides here. In the vision seminar part of the workshop the groups derived future scenarios, taking into account the barriers and enablers for the role they were focusing on, describing the use of data for cancer treatments in year 2050. During the last 30 minutes the scenarios from each group were presented, by a group representative, in plenum. During these presentations, a professional sketcher, Maja Larsson, drew sketches of the scenarios in real time!

Aside from the scenarios, the workshop resulted in some action points highlighting what needs to be done to reach the visions. Some of these were implementation of standards for interoperability, infrastructure for secure and powerful data transfer, allowing patient contributions and acknowledging that patients own their data.

You find more action points, thorough descriptions of future scenarios as well as a sample of Maja’s sketches in the post-conference report. In that report, you can of course also read about conclusions from all other workshops. I really recommend that you read the report!

So, what’s next? Uppsala Health Summit is a yearly event, and next year’s focus will be Healthy Urban Childhoods. The work with next year’s summit has already began. A few months ago I took part in a brainstorming activity where key aspects were discussed. I’m not sure what role I will play in the next summit, but I really hope that I will once again get the opportunity to organize a workshop and hopefully also join the programme committee!

conference · Uppsala Health Summit

Uppsala Health Summit 2018, part 3: the workshop planning

Pre-conference report

One of the major tasks for the program committee for Uppsala Health Summit was to discuss the development of the eight workshops that were held during the summit. As I mentioned in an earlier post about the summit, at least one member from each workshop team was represented in the committee. In this way, we could have detailed planning sessions among the workshop organizers and more general discussions in the program committee.

One of the important things we discussed during the committee meetings was the general perspectives that should be taken into account in all workshops. These were:

  • A global perspective – the situation regarding cancer care is very different in low and middle income countries, both when it comes e.g. to infrastructure and access to treatment, compared to high income countries. Forum for Africa Studies was represented in the program committee to make sure this perspective was sufficiently handled.
  • A child perspective – there are very troubling differences regarding diagnoses and treatment outcome between children and adults. For different reasons, children are e.g. often not diagnosed early enough. The Swedish Childhood Cancer Fund was represented in the program committee to make sure this perspective was sufficiently covered.
  • An equal access perspective – the points above relate to equal access, but there are also other differences to be found e.g. within countries and between different other demographic groups.

These perspectives, or themes, were discussed in depth during the first meetings and I think we managed to integrate them in a good way in all workshops. The perspectives are very important to consider when discussing cancer care and they did not only occur in the workshops but also in the plenary sessions. I will write more blog posts about these perspectives, and how they were covered in the different parts of the summit, in later posts in this blog series. I will of course also get back to the results of the workshops.

The first deliverable from the program committee was the pre-conference report, which was sent out to all delegates prior to the summit (see blog picture). Aside from an introductory section and some other pages with information and interviews with sponsors, the report included one section for each of the workshops, respectively. The idea behind this report was mainly to introduce the areas behind each of the workshops and some of the challenges and opportunities related to them. You can find the pre-conference sections about each of the workshops here. I really recommend you to read them, since they sum up many of the major challenges that we face in cancer care today.

 

 

Uppsala Health Summit, part 1

Uppsala Health Summit, part 2

 

conference · Uppsala Health Summit

Uppsala Health Summit 2018, part 2: the overall experience

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This is my second post in my blog series about this year’s version of Uppsala Health Summit. Here, I will write about the overall experience and the program. I’m doing this as one of the members of the program committee (see blog picture), so I may be a little biased  🙂

First, it is important to note here that Uppsala Health Summit is not a scientific conference, where researchers gather to discuss new findings related to healthcare and wellbeing, but rather an arena for discussions and debate among different stakeholders. The aim is e.g. to influence policy decisions related to societal challenges (often on a global scale). Even though it was possible to register for the summit on the summit’s home page, most of the participants were specially invited by the management or members of the program committee. This was very important for the overall atmosphere during the summit days – the participants knew they were there for a reason and that they had something very important to contribute with. Participants from many different disciplines were invited and decided to join us. There were many physicians present from all over the world (35 different counties were represented!), leaders of different healthcare organizations, researchers from different fields and countries, politicians and other policy makers, journalists from different parts of the world and also several patients who had undergone cancer treatments.

Personally, I found Uppsala Health Summit to be one of the most rewarding events I have participated in this far. This is much due to the interesting mix of delegates from different disciplines,  backgrounds and parts of the world, and also the program. Every part of the program was well thought out – even the coffee breaks, where delegates could join pre-booked “match making” sessions to discuss common interests or learn from each other. All plenary sessions and workshops really made you think, something that was evident from discussions among delegates during the summit.

There were four plenum sessions in total, each with a different theme. All these sessions were held in Rikssalen at Uppsala castle – what a place! The summit started off with a plenary session on visionary outlooks, which covered both challenges and opportunities related to cancer care on a global scale. The second plenary session focused on patients as the driving force to develop care and the third one focused on access to treatment and diagnostics. Both the second and third session included very interesting and thought-provoking discussions on differences between developed and developing countries. I will get back to this in a later blog post in this series. The fourth plenary session, which I unfortunately missed, focused on behavioral changes and lifestyle. These plenary sessions covered the area “Care for cancer” in a very good way and brought several important questions regarding e.g. equal access and patient empowerment to light.

Between the plenary session (one directly in the morning and one towards the end of the day), everyone engage in the workshops I mentioned in the first part on this blog series. There were four parallel workshops during both days, so the participants needed to chose a first and second hand choice when registering for the summit. All workshops had a duration of three hours distributed around a lunch break where everyone gathered at the castle’s top floor. The workshop I, and most of my colleagues from Uppsala University, participated in during the Thursday as well as our own workshop during the Friday, used also the lunch break for workshops discussions. I really enjoyed the workshops – everyone was eager to discuss and it was especially interesting to get input from many different perspectives! I will write more about these workshop in a later post. Both days ended (with exception from a short closing talk the last day) with quick presentations of the workshop results in plenum.

The summit also included a nice social program. Everything started already the day before the main events at Uppsala castle, at the Scandion Clinic. My colleague Åsa Cajander has written about the sightseeing at the radiation clinic in this blog post. The Friday also started off with a morning walk in the Uppsala University Botanical Gardens. Since I live in Stockholm, I couldn’t attend that walk 7:45 in the morning, but I know that it is quite an experience walking around there. After the first day, there was also a very nice conference dinner with a Swedish midsummer theme – the project manager for the summit, Madeleine Neil, had changed to traditional folk costume and the buffet included all the traditional midsummer ingredients. A group of folk musicians also played traditional songs before and during the dinner! The only little detail that did not add up was that midsummer wasn’t really last Thursday, it’s today!

I hereby wish you all a happy midsummer!

 

 

Uppsala Health Summit 2018, part 1

conference · Uppsala Health Summit

Uppsala Health Summit 2018, part 1: time to start discussing some tuff questions related to cancer care!

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As I have written before on this blog, I have been involved in this year’s version of Uppsala Health Summit with the theme “Care for cancer”. See this blog post, for an introduction about the summit and the workshop that I co-organized together with my colleagues Åsa Cajander and Christiane Grünloh. Apart from co-organizing the workshop on the use of data for better cancer treatments, I was also a member of the program committee.

This is the first post in a blog series I will write during the summer, about the content of the summit and the preparatory work performed by the program committee. My intentions are mainly to raise awareness about the summit as such (a yearly event with different themes each year) and to highlight some important challenges, as well as opportunities, related to cancer care that were brought up during the summit.

This year’s program committee consisted of researchers (mostly professors) from a wide range of fields related to cancer care (e.g. oncology, physiotherapy, bio informatics, precision medicine and pharmacy) and all members also represented a workshop focused on their respective fields. You can read about all the workshops here. It was really interesting to take part in the meetings where the program was decided upon, even though many of the topics discussed were outside my main research field. I will get back to my experiences from the program committee work in a later post in this series.

One of the last things we did in the program committee was to agree on the content of a debate article that was published the same morning as the summit started. Our goal with the article, which was signed by all members of the program committee, was to highlight some tuff questions related to cancer care and to raise awareness about the summit and about some key challenges that we are facing. One of the important take-home messages is that we need to find international collaborations regarding e.g. bio banks, rare tumor diseases, data sharing, etc. – the challenges are global and should be tackled as such! I will get back to the global perspective on cancer care in later blog posts in this series. I’m really pleased with the article and I really recommend you to read it. You can find the link here (unfortunately, there is only a Swedish version).

I will be back soon with the second part in this blog series, where I reflect on the overall organization of this year’s Uppsala Health Summit, so stay tuned!  🙂

conference · DOME · eHealth · Medical Records Online · National patient survey

Presentation at Medical Informatics Europe about when to provide access to new information in patient accessible electronic health records

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As I wrote in an earlier blog post, two papers on which I was a co-author were presented in parallel sessions during the first day of the Medical Informatics Europe (MIE) conference. Luckily, Åsa Cajander and I managed to switch rooms, after our presentation, before Maria Hägglund started hers. Maria’s presentation of the paper “Timing It Right – Patients’ Online Access to Their Record Notes in Sweden” was also about work performed within the DOME consortium, but it focused more on the patient accessible electronic health records system (Journalen) as such and on when new information is presented for the patients to see.

Maria started off by giving a thorough overview of Journalen as well as the national patient portal where patients e.g. can, apart from logging in to Journalen, contact care providers electronically, book times and check as well as renew medication prescriptions. As can be seen in the blog picture above, Sweden’s independent regions are responsible for healthcare and as a consequence there are some differences regarding e.g. which health record systems are used and what policies are followed when it comes to information presented in Journalen.

After introducing Journalen and the national patient portal, Maria continued by discussing the Swedish National Regulatory Framework and especially the part concerning when patients get access to new information (e.g. lab results or visit notes). The big issue here is that each independent region or healthcare provider can make a choice (electable paragraphs) if they want to give patients immediate access to new information or not. The alternative is to use a two weeks delay. The different providers and regions can also choose whether or not patients get access to unsigned notes/results. The obvious consequence of the electable paragraphs is differences between different county councils, regarding when patients get access to information in Journalen.

Towards the end, Maria also revealed what the patients say about waiting times. Results from the national patient survey show that the majority of patients want to see new information in Journalen within a day and only about 20% think that a two week waiting period would be ok. This is interesting to relate to the fact that the majority of the county councils have chosen to use a delay period of two weeks for unsigned notes (in the survey, the patients were informed about that new information presented in Journalen within a day will most probably not yet be signed by a physician, but they still wanted quick access).

If you want to know more about this study, you can find the open access full paper here.

 

conference · DOME · Medical Records Online

About our workshop on data for diagnoses and treatment of cancer, at Medical Informatics Europe

Isabella (2)

Last Thursday, Isabella Scandurra, Christiane Grünloh and I ran the workshop “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer” at the Medical Informatics Europe (MIE) conference in Gothenburg. I introduced the workshop in this blog post some weeks ago. The workshop was held in the time slot 8:30-10:00 in parallel with other workshops and sessions at Vitalis and MIE. This is probably one of the reasons why we unfortunately only had five participants aside from ourselves. But nevertheless the discussions in the small group were very interesting and the outcome can surely be used to develop scenarios of how we want to utilize e.g. self-tracking data from patients for diagnoses and treatment of cancer in the future.

Christiane started by presenting the schedule and introducing the general idea with the workshop – to develop future scenarios related to usage of self-reported and already existing data in cancer treatment, informed by real-life critical incidents. Before we started the group discussion two critical incidents were presented – one by Isabella and one by me. I really think it was great that we could use personal scenarios instead of just using another person’s story.

The picture above is from Isabella’s presentation of her critical incident, related to medication and side effects. During a recent chemotherapy treatment, she constructed her own charts with data about medication (type, time, amount, etc.) – data that is not accessible to anyone else. This data could potentially be very useful for other patients getting similar treatments and would probably also enable e.g. better follow-ups by healthcare professionals. It’s also quite common today, that patients take notes on e.g. side effects of medications, but there is really no good way of transferring this information to other stakeholder. Thus, Isabella’s critical incident related to possible use of data which is currently not accessible to key healthcare stakeholders.

My critical incident, on the other hand, related to lack of access to lab results. In some earlier blog posts, I have written about my autoimmune disease and the immunosuppressive medication I take. The problem with a low immune system (in my case induced by the medication) is that you don’t realize the problem until you get some kind of virus or, even worse, bacteria infection. The critical incident I presented focused on a scenario where my physician called me the day before I should travel to a conference and told me that my immune system was very weak (=I couldn’t travel anywhere). Since I felt perfectly fine and was more than ready to leave, I cannot help wondering what might have happened if I had missed that call… You can read more about this incident here and I will soon write another post about the opposite scenario – about when online access to my medical record definitely saved the day (and probably the month)!

After the critical incident presentations, I shortly introduced how we wanted to work with scenarios and after that we started the discussions based on the presented critical incidents as well as the other participants’ personal experiences. Since we were so few, we did not derive any actual scenarios, but rather discussed what type of data that is currently underused and how we should collect and work with that data. Several important points were brought up during the discussion, which focused a lot on the type of critical incidents that Isabella had presented. One key theme in the discussion was that we need to make much better use of information which is collected and written down manually by patients. This type of data is not collected today and this is a problem, both when it comes to treatment efficiency and research. One idea was to provide a platform to enable the patient to add this information digitally and another to let the patient submit information through voice input. In both these cases we most probably have legal issues to deal with and we also have the usual challenge with unstructured and anecdotal data. Towards the end of the discussions, I think we ended up with an idea that could actually work and that could contribute to a more efficient cancer treatment! I definitely think we should discuss the possibility of basing a Vinnova application on it.

Before we closed the session, Christiane also told everyone about our upcoming workshop at Uppsala Health Summit. Several of the participants seemed interested in it, so I hope we will meet at least some of them at the summit later on in June!