DOME · eHealth · Grant application · Medical Records Online · National patient survey · Popular science · Uppsala Health Summit

Overview of my research within eHealth

Journalen

Since I am still very much on a planning stage regarding the research I will perform during my recently started assistant professorship at Örebro University, I will take the opportunity to write a few posts about the research I have performed and what is currently going on. I will start by discussing research within the eHealth domain.

What have I done related to eHealth?

Those who have followed this blog during the latest years already know about my research on patient accessible electronic health records (PAEHRs), which I conducted during my time as a postdoc at Uppsala University. You can read a short summary about my two major studies (a national patient survey and an interview/survey study with clinicians at Uppsala University Hospital), submitted grant applications and conference activities in this blog post.

In total, my research on eHealth has, up until today, resulted in the following two journal publications (links lead to the open access articles):

and the following seven conference proceedings (most of the links lead to open access publications):

The work within the eHealth domain has also resulted in the following popular science publications (and some other news coverage, which you can read about here and here):

To sum up, my research within this domain, up until today, has focused on PAEHRs and their effects for patients and healthcare professionals.

My ongoing research within the eHealth domain

I am currently involved in quite a few ongoing research activities related to eHealth, especially when it comes to pushing journal manuscripts through the peer-review process.

When it comes to data gathering and analysis, there is still a lot of work to do in the large interview/survey study at the Oncology department at Uppsala University Hospital that I mentioned before. For many different reasons we were not able to conduct all the 20 interviews with nurses that we had planned. Around 10 more interviews need to be performed. When it comes to the physicians, the data gathering is complete and we are working with the analysis. My hope is that we will be able to submit a first overview article about those interviews in late autumn 2019 or early spring 2020. Specific theme articles are also planned, but they require a more in-depth analysis. The articles based on this study will be very important for research on patient accessible electronic health records in Sweden, since this is the first large follow-up study in Sweden regarding long-term effects of PAEHR on the work environment of healthcare professionals.

When it comes to the national patient survey all data gathering is completed, but there are still some themes from the survey that we want to look into in more depth. These include information literacy, computer security and comparisons between different disease groups.

I’m currently working on some journal publications together with colleagues in the DOME consortium. One of these articles reports on findings from the survey on the effect of PAEHR on the work environment of healthcare professionals, distributed to physicians and nurses at the Oncology department at Uppsala University Hospital. I expect this article to be published quite soon (a minor revision is about to be submitted back to the journal), so there will be a publication and, of course, a press release coming up pretty soon. One journal manuscript focusing on sharing health records is currently in the first review round and two journal manuscripts based on the patient survey, focusing on cancer and psychiatry patients, respectively, can be submitted to journals quite soon.

Upcoming research on eHealth

As I said in the beginning of this post, I’m very much on the planning stage when it comes to future research. There are a few activities, however, that I’m sure I will be working with during the upcoming months (these will get their own blog posts later on):

  • Currently, it seems that I will submit at least two conference articles to next year’s version of Medical Informatics Europe. The deadline for submissions is September 1st, but on the other hand there is a scope limit on five pages. One article will be about results from the interview/survey study with healthcare professionals and the other will focus on results from the patient survey.
  • Quite soon, I will take the lead on a more theoretical journal article, focusing on the role of the PAEHR as a communication mediator in healthcare.
  • The above-mentioned article is directly related to a research grant application which is currently being reviewed by the Swedish Research Council (VR) – if the application is accepted I will finally get the opportunity to lead my very own research project!
  • There is also another grant application, related to psychiatry records online, which is currently being reviewed by the Swedish Research Council for Health, Working Life and Welfare. 2020 can be a very interesting year, indeed!
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!

DOME · eHealth · Medical Records Online · National patient survey · Uppsala Health Summit

Submission week!

Måne

This week I submitted several texts, related to different studies and activities I have been working with during the last couple of years. Last Monday, I finally submitted the first version of the journal article presenting the first findings from the observation/interview/survey study at Uppsala University Hospital! The article focuses on the survey part and contains several interesting results (some of them surprising) about how the work of healthcare professionals has been affected by patient accessible electronic health records. Now, Åsa Cajander and I just have to wait for the peer review reports! I will write more about this study when the peer-review process has been completed.

Last Thursday, I submitted the last corrections to the proofs for the overview article about the large national patient survey which several researchers within the DOME consortium have worked with. Within a few days the article will be published open access! The article will present the very first results from the follow-up work about long-term effects (for patients) of patient accessible electronic health records in Sweden. A press release has already been prepared and my next blog post will probably focus on that. I really wonder what effects that press release will have, since the last one we published was picked up by several media sites!

Last Friday, I also submitted the last correction to the post-conference report for Uppsala Health Summit, where the results from all workshops are presented. Next week, that report will be sent to layout editors and I will of course write a blog post about it when it has been published online.

This has been quite a productive week for me, but several important things will happen during the next couple of weeks as well, so stay tuned!

The blog picture is my own – I took from the ferry while going from Öregrund to Gräsö Yesterday.

 

 

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!

Debattbild

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!  🙂

Uppsala Health Summit

Interview with Åsa Cajander about our workshop at Uppsala Health Summit!

As I wrote in this blog post, Åsa Cajander, Christiane Grünloh and I are organizing a workshop at Uppsala Health Summit. The workshop focuses on the use of data for diagnosis and treatment of cancer. More information about this year’s theme, “care for cancer” has been posted on the summit’s web page now. According to the current plan, our workshop will be held during three hours (with a pause for lunch) on Friday 15 June.

If you want to read a very concise summary of our workshop, you can find one here. If you want to know more about some of the challenges, related to use of data in healthcare, that will be brought up to discussion in the workshop you can read about an interview with Åsa Cajander (main organizer) here! In the interview, she also describes how we will make use of critical incidents in the workshop.

I’m really looking forward to continue working with this and I’m positive the workshop will yield many interesting and important results! I will write a new post about the summit when there is a link to the pre-conference report.