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!
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

Gåsflock1

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.

DOME · eHealth · Medical Records Online · National patient survey

New extended abstract on age-related differences in the experiences of reading patient accessible electronic health records

Age_differences

The national patient survey on patient accessible electronic health records (PAEHRs) in Sweden keeps generating research output. A while ago I wrote a blog post about the first journal publication (an overview article) which was based on the survey and another one about the effects of the press release where the publication was introduced to the public. The fact is that an extended abstract, based on the same study, was published in the Finnish journal Informaatiotutkimus just a few days after the overview article was published.

The extended abstract, with the title “Differences in the experiences of reading medical records online: Elderly, Older and Younger Adults compared” was accepted to the Information Studies Symposium 2018. Isto Huvila, who is leading the analysis and writing processes of the parts of the survey related to information literacy and age-related tendencies, was the first author and the other authors were Kristina Eriksson-Backa, me, Gunilla Myreteg and Maria Hägglund. Kristina is a member of Isto’s project HIBA (Taking Health Information Behaviour into Account: implications of a neglected element for successful implementation of consumer health technologies on older adults) and all others are members of the DOME consortium.

The extended abstract, which can be downloaded for free here, is very short and can be seen as a teaser of what to come. As we conclude in the abstract, there are many interesting significant differences between patients from the three age categories used (Younger adults, Older adults and Elderly) when it comes to experiences of using the Swedish PAEHR system Journalen. Of course, we are not done here – we will dig deep into the data and look for interesting patterns and tendencies which in turn can be used to understand how persons from different age groups are affected by PAEHR.

I will get back to this topic soon, when a conference paper on age and information behavior is formally published. Aside from health literacy and age, we work on several other important topics from the survey like for example psychiatry, cancer and information security so you can expect a lot more from the national patient survey study! Stay tuned for more!  J

DOME · eHealth · Medical Records Online · National patient survey · Popular science

Another successful press release!

JMIR

As I wrote in my last blog post, an article based on the national patient survey, Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden, was recently published in the Journal of Medical Internet Research. Once again, Åsa Cajander and I wrote a press release that was published a few days after the journal article was published open access. As I wrote in this blog post a press release can really have an impact when it comes to spreading research results to the general public.

As was the case the last time, our new press release was picked up by a number of different sources (once again, all articles about our study are in Swedish):

  • Forskning.se published the article Patienter positiva till att läsa sin journal på nätet. They picked up our earlier press release as well and they once again wrote a re-organized version of the original press release.
  • Ciennce.se once again asked for a popular science summary of our study. That summary remains to be written.
  • Inera.se published the article Patienter positiva till journalen via 1177 Vårdguiden. Inera coordinates and develops digital solutions for healthcare and many other publicly funded areas. They manage Journalen and many other eHealth solutions and they also helped us in distributing and collecting survey responses. Inera’s news about our study was widely spread especially on Twitter.
  • IT-Hälsa published the article Patienter positiva till journalen i 1177 Vårdguiden. IT-hälsa is an online journal which primarily targets everyone who work IT in healthcare. Their article is based on the one Inera wrote.
  • People have also contacted me by email asking about which other parts we will focus on in the patient survey (the recently published article is just the first in a long list of articles about that study) and if we also conduct studies with healthcare professionals.

So, once again it is safe to conclude that it could be a very good idea to publish press releases about research results. I also think it’s safe to conclude that the interest that has been shown highlights that our research is important for society.

DOME · eHealth · Medical Records Online · National patient survey

New article published about the patients’ views on patient accessible electronic health records in Sweden!

JMIR

Last Thursday, the first journal article that is based on the national patient survey about patient accessible electronic health records (PAEHRs) in Sweden was finally published in the Journal of Medical Internet Research! The article, “Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden”, focuses on survey results related to demography, usage and attitudes towards the service, as well as perceived importance of different functions. I led the analysis and the work with this article, which I wrote together with Hanife Rexhepi (who led the design of the survey), Åsa Cajander, Christiane Grünloh (who defended her thesis last Friday!), Isto Huvila, Maria Hägglund, Gunilla Myreteg, Isabella Scandurra and Rose-Mharie Åhlfeldt (see author affiliations in the blog picture above).

In the article we present several results from the first national follow-up study about patients’ views on and experiences with the Swedish PAEHR system Journalen. In total, 2587 patients answered the survey, which could be found on the login page to Journalen during a 5 months period. Some of the key results are:

  • Access to test results is the most important resource for patients (especially interesting, since most county councils did not show test results in Journalen at the time the survey was open)
  • Patients mainly use Journalen to get an overview of their health and contacts with care. Another important reason for use was to follow up on visits.
  • Patients are very positive towards the PAEHR as a reform and the possibilities the system gives them.
  • Patients want access to new results in Journalen within a day after a visit/test (many county councils have a delay period of two weeks before new results are shown to the patient – see this article for more details about that).

The article is published open access here, where you can find more results and details about the study. As was the case for our last study about PAEHRs in Sweden, a press release was published by Uppsala University. You can find the press release (in Swedish) here and another version published by Forskning.se here.

Here is the article’s abstract:

Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.

Objective: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

The research group, consisting of researchers from the DOME consortium, is currently working on quite a few other journal articles about results from the survey where we e.g. focus on and compare different patient and age groups. There is definitely more to say about this study, so stay tuned for more!

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.

 

 

DOME · eHealth · Medical Records Online · National patient survey

Back after a blog break!

Beijershamn

Those who follow my blog regularly have probably realized that I haven’t made any new posts during the last couple of months. I took a break from the blog since I needed a few weeks of 100% vacation and I also had several writing and analysis tasks going on in parallel. The fact is that I wanted to do as much as possible before my position as postdoc at Uppsala University ended last Thursday! I will of course write a blog post where I summarize my time at Uppsala University. I still, however, have quite a few things left to do, especially when it comes to writing papers, so I will continue to work closely with my colleagues in the HTO group at Uppsala University as well as in the DOME consortium.

During my period off the blog quite a few things have happened. Two journal articles were accepted and one of them was actually published open access last week! One is about threats and violence in relation to patient accessible electronic health records (PAEHRs) and the other is an overview paper about the national patient survey (focusing on Swedish patients’ attitudes towards and experiences with PAEHRs), which I have written about many times before on this blog. Both of these articles are expected to draw a lot of attention, so they will be announced in press releases! The first of these releases might go online already on Monday. Aside from working on press releases and dealing with copyediting issues for these two articles I also finalized a draft of the first journal article about results from the extensive interview/observation/survey study at Uppsala University Hospital. The article, which covers the survey part, will be submitted very soon. I also wrote major parts of two journal articles where we compare patient groups from the national patient survey and smaller parts on some other papers related to that study. Last, I also worked on two grant applications – one about patient accessible psychiatry records and one about technology support for better inclusion of visually impaired pupils in primary school. So, a lot of things have been written during these last months and I will of course write individual blog posts about all of these articles/applications.

Aside from writing I have also completed a preliminary analysis of the interviews with physicians in the interview/observation/survey study at Uppsala University Hospital. We definitely have some interesting results and very soon we will meet in the project group to discuss the results and how to move forward. I will of course get back to this work in other posts during the autumn.

From next week I will write blog posts more regularly and I will most probably start with a post about the upcoming press release!

 

(In case you were wondering – I took the above picture during my last visit to Öland)