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!  🙂

DOME · eHealth · Medical Records Online · Thesis defense

Recently attended Hanife Rexhepi’s brilliant defense!

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Three days ago, on Tuesday 22/5, I attended Hanife Rexhepi’s thesis defense in Skövde. We are both researchers within the DOME consortium and we currently collaborate in several large follow-up studies on patient accessible electronic health records in Sweden. I arrived in Skövde a few hours before the defense and left the following day, after a very nice informal dinner.

Hanife’s thesis, which you can find here, builds a lot on the shared decision making process and the practice of evidence based medicine, and focuses on how information systems can be redesigned to facilitate communication between healthcare professionals and patients as well as access to knowledge for both patients and healthcare professionals (prerequisites for shared decision making and the practice of evidence based medicine) during the patient process. The work builds, primarily, on three case studies that include observations and interviews with healthcare professionals and patients. Through her work Hanife has been able to pinpoint several challenges, related to lack of information access (especially related to tacit knowledge) and support for shared decision making, for both healthcare professionals and patients. The work has led to, among other things, several guidelines for how to facilitate the shared decision making process as well as the practice of evidence based medicine, through supporting information systems, in an integrated manner throughout the care process. This is my short summary, but you can also hear Hanife’s own summary in the short interview (in Swedish) presented here.

Hanife did an excellent job during all parts of the defense! Before the defense, she was given the choice to either present the thesis herself or let the opponent do it. Since she chose to do it herself, the first 45 minutes were devoted to Hanife’s very professional presentation of her thesis work. I really enjoyed listening to it – the presentation was clearly structured and she really managed to use the outcome of the many projects she has been involved in to draw attention to important problems. She showed great confidence and she wasn’t afraid to use humor, at appropriate occasions, to make her points.

After the presentation, Hanife discussed her thesis work with the opponent, professor Peter Bath. I must say the she did an exceptionally good job during this part of the defense process! I have been to numerous defenses during my years in research and I have never before seen a doctoral student handling this discussion with such confidence and calmness. The opponent’s questions were really well thought-out and Hanife always had good answers and really took her time explore the questions in-depth. Sometimes she even drove the discussion. It was really a pleasure to listen to the discussion part of this defense!

After a little more than an hour’s discussion, the grading committee asked a few questions and Hanife also handled this part with ease. The same goes for the questions from the audience.

During my time at KTH (more than a decade) I was responsible for courses in communication and research rhetorics, so I know what I’m talking about when I say that it is very unusual to come across someone with such a good set of communication skills (including both written and verbal communication). I’m really happy that I was able to come to Skövde and experience this in real life!

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

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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!

conference · DISA · DOME · eHealth · Medical Records Online · Vitalis

Today’s presentation at Medical Informatics Europe was successful!

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As I mentioned in yesterday’s blog post, Åsa Cajander and I had a presentation to carry out at the Medical Informatics Europe conference today. We got 11 minutes to present (which is a really short time if you want to describe a study and its results in a good way) and we were done after 11.03 minutes! I started with presenting myself, Åsa and the DOME consortium (the image above, taken by our colleague Hanife Rexhepi, is from that phase of the presentation) and then moved on to introduce Journalen, the patients accessible electronic health record system in Sweden, and the interview study with nurses. Åsa then continued by going through the four main themes that were found during the analysis (themes related to the effect of Journalen on the nurses’ work environment and their communication with patients); “Altered contacts”, “Increased workload”, “Creates uncertainty” and “Requires new knowledge”. You can read more about these themes and results related to them in the paper which you can find a direct DOI link to here.

I concluded by highlighting some important take-away messages from the study:
• The enhanced communication, which Journalen is perceived to give, is key to shared decision making!
• Both nurses and physicians see a risk with patients accessing unsigned notes and increased workload when patients request clarifications
• There is an identified need to educate both medical professionals and patients in how to use systems like Journalen

Usually, after you have presented something at a conference, you can relax for a bit but that wasn’t the case for Åsa and me. A few rooms away, our DOME colleague Maria Hägglund presented the study Timing It Right – Patients’ Online Access to Their Record Notes in Sweden in a session parallel to ours. Luckily, we managed to switch rooms in time for her presentation. I will write a separate post about that later.

Tomorrow, I will be presenting again – this time at Vitalis. The same goes for several other DOME colleague as well as representatives from Inera. After a nice dinner with several colleagues from Uppsala University and DOME, Hanife and I had a test run of our presentation, which will take the form of a role-play contrasting physicians’ and patients’ views on Journalen. That will be an interesting experience! We have two hours (13:00-15:00 in room A5) with several short presentations using different presentation modes as well as Mentimeter questions for the audience. If you are at Vitalis and are interested in Journalen and similar health record systems, I can really recommend that session.