Category Archives: eHealth

Kampen on Karolinska: Konsulterna by Anna Gustafsson and Lisa Röstlund

If you haven’t read the book Kampen om Karolinska: Konsulterna (the battle of Karolinska: The Consultants) and you work with eHealth or health care – you should definitely read it!

The book is written by two journalists working at DN which is one of the large high quality newspapers in Sweden. There has also been a large series of articles in DN related to Nya Karolinska. In short the building of this hospital has cost Sweden billions of money and there are numerous scandals along the way. Today the hospital still has a serious crisis as staff has quit, patients have died and very few people admit to have had the responsibility for the situation.

When writing the book the authors have done more than 200 interviews, read thousands of documents and spent several years understanding the process. In the book they have chosen to present their findings through stories from interviews and the book has a long list of references,

Others have also found this book interesting and Läkartidningen writes: “A book that ought to be a compulsory read”. Managers and leaders in health care should read this book, according to Läkartidningen.

In short the book is about the building of a new university hospital in Stockholm, New Karolinska Hospital, and the events related to management and organisations that is quite a horrible read.

Five things I found especially interesting while reading was:

    Boston Consulting Group earned enormous money from the implementation of management ideas that were really not very well tested at all. Moreover, many of the consultants had no experience from health care and were very young. They have 16 000 employees in 50 countries. I think academia have problems with impact in health care with research results, but obviously these people had no problems with impact at all. What did they do to be heard and listened to?
    Some of the ideas from Value Based Care are indeed good, such as a focus on patient’s values. However, they seem no to dominante the processes when implemented and many of the managers seems to have forgotten the patients in the change process. In the summer of 2017 60 cancer patients at Karolinska did not get their surgery on time! A result from money connected to patient value could be that areas where patients are quite well will have high numbers on satisfaction/value and hence get more money whereas hospitals treating people with multiple and complex problems would get less money.
    The ideas with metrics based control in their management strategy is indeed crazy, and I don’t understand how this idea could continue to be attraktive after the failures of new public management? When measuring there is a risk that people pay more attention to what is possible to measure independently on if it is important or not. Things that are not possible to measure will be seen as less important.
    A process oriented organisation without clinics seems really risky to implement. Where did they get this idea from, and how could they base the management strategy on the core idea that one patient has one decease when we know that there is is large group of patients that has multiple deceases?
    There is an interesting tension between the laws in health care and innovation. Some of the things they implemented at Karolinska was really illegal and did not for example comply with GDPR. However, I also think that sometimes the laws need to be tested as they are not really made for a digitalized society.

New Project – Methods for a Better Digital Work Environment

Marta Larusdottir and Åsa Cajander received funding from AFA for a project called Software Development for a Better Work Environment (the STRIA project). The project will run from May 2019 to May 2022.

Here is a text presenting the project. The text is a translation from an AFA article found here: https://www.afaforsakring.se/forskning/forskarportratt/asa-cajander/

IT systems in health and medical care cause both physical and psychosocial work environment problems, but this is rarely considered when developing computer systems. Åsa Cajander, researcher at Uppsala University, will study the digital work environment in healthcare and administration and further develop three methods for system development.

– Earlier research on how to work in IT projects shows that one rarely or never thinks of work environment consequences, says Åsa Cajander, professor of human-computer interaction at Uppsala University.

– We will map the digital work environment in health care and in administrative work and look at how the latest technology affects the working environment. We plan to look more closely at automation and artificial intelligence.

Åsa Cajander worked as an IT consultant before she began researching digitization and work environment issues in 2002. She has, among other things, participated in a research project on digitization and health in the state and has an ongoing project on nurses’ digital work environment. Now she is going to investigate how to get the work environment perspective already in the development of computer systems.

– There are methods within system development that consider usability. The three methods that are most popular today are one that is based on personas, one that is called think aloud and a so-called heuristic evaluation, where one evaluates interfaces based on certain rules of thumb, says Åsa Cajander.

– We have chosen to try to further develop these three methods together with system developers in workshops and with the help of interviews. The idea is that we should include work environment issues in the toolbox used when working with IT development.

Examination of digital work environment in healthcare

The next step in the project is to investigate the digital work environment in health care and in administrative professions. Åsa Cajander and her colleagues will study how employees within both healthcare and administration work with IT systems and how it affects their work environment.

– We plan to study the digital work environment in Region Uppsala, both in healthcare and in other parts of their business. We also have contacts in Uppsala municipality and in Region Stockholm and hope to do the same there. We may supplement this with studies of the working environment within the administration at a university in Iceland and Uppsala, where one of my colleagues has contacts.

What do you hope for from the project?

– This project has an unusual component and it is that we cooperate with Prevent. They will be involved during the project and then they will receive and manage the results, that is, the further developed methods and a training material we will develop on how to work with the methods.

– Prevent will use our results in their education. It will also be a web education material on their website. I hope for the idea that someone takes care of the research results and markets it, manages it and ensures that it is used. I hope that this can contribute to real change in the field of digital work environment.

What got you from the beginning interested in digital work environment?

– I worked as a consultant around the year 2000 at a large international IT company and saw the consequences of the IT systems out in the workplaces. I saw the users’ frustration, I saw the technostress and how it affected the work structure and work processes. And I really wanted to try to help solve that problem and try to make the digital work environment better, says Åsa Cajander.

 

Collaboration with Region Uppsala Resulted in Students Presenting at Vitalis

This years’ IT in Society Class got the task from Region Uppsala to look into primary care. Students in this class come from Uppsala University and the highly prestigious Rose-Hulman Institute of Technology. Anne Peters, Mats Daniels and Åsa Cajander are teachers in Uppsala, and Cary Laxer is the teacher in Indiana. The Rose-Hulman students visit Uppsala twice during the semester and experience snowy Sweden (see picture).

By the end of the semester they submitted an abstract to the peer-reviewed industry conference VITALIS – and they were accepted! The Vitalis conference is the leading eHealth conferences in the Nordic countries with more than 5000 participants who now have the opportunity to meet our students. See you at Vitalis!

Below is the abstract: 

What could a digitalized primary healthcare look like in 2030? This was the question addressed by a group of around 25 computer science students from Uppsala University and Rose-Hulman Institute of Technology in the US. To examine this question, they collaborated with healthcare professionals in Region Uppsala. In their semester long project, they researched the current primary healthcare system in order to find digitally related improvements that can impact how healthcare could look like in 2030. The research conducted is human-centered and seeks to define modernization methods that would improve the working situation for the medical professionals, as well as the patients’ experience. To grasp the current workflow in Region Uppsala we conducted a holistic overview from two perspectives: the patient perspective and the healthcare professional’s perspective. We found that the current primary care system has areas of improvement in the fields of User experience and Graphical User interfaces for computer systems that patients and staff members use. We also found that digitized self-assessment and triage is an area that can reduce the workload of the staff and enhance the patient experience.

Our research has also highlighted the need to find new digital tools and adapt the existing digital solutions to provide a better working environment for workers in primary care. This would imply moving away from “pen and papper” analog systems towards a more digitally integrated, cohesive system.

The suggestions that we provide in this presentation are based on sound scientific studies previously conducted and on extensive field interviews with more than 20 involved specialists and data gathering on the current system. We have also conducted two surveys in order to understand how patients feel in regards to the current primary care system and participated in observations to see how primary care professionals operate on a daily basis.

Some of the solutions we propose are:

– the smart, easy to use design of graphical interfaces that also adapt and learn the user’s behaviour to provide ease of access

– adding more real time alternatives to get in touch with medical professionals such as live chat messaging

– using wearable devices to monitor frequent patients’ clinical measurements

– modernizing the analog areas of the current system with the help of new technologies.

Looking forward into the future, we have ideas of how a future system could look like in 2030. The areas of improvement are relying on the continuous development of artificial intelligence and machine learning, all integrated to reiterate our objective: an efficient, human-centered primary care. We hope that these improvements would lead to a better medical system and change society for the better.

Welcome to an International Summer School in User Centred Design and Health & Wellbeing in Finland

Welcome to an international course on interaction design!

I am co-organising a summer school together with a group of Nordic researchers.

This Nordplus funded class brings together practitioners, students, and teachers from Iceland, Finland, Estonia, Denmark, and Sweden to gain a higher level of digital literacy. The course provides the basic skills in user-centred, hands-on interaction design during two intensive weeks, including Google Design Sprint.

Experimental Interaction Design
29 July – 9 August, 2019
Aalto University, Finland (www.aalto.fi)

Applications deadline: 31 March
Acceptance notifications: 19 April
More information: https://blogs.aalto.fi/ixd19/

For questions, please contact:
Ilja Šmorgun, Lecturer of Interaction Design, Tallinn University ilja.smorgun@tlu.ee

Welcome!

New Publication: Patients reading their medical records: differences in experiences and attitudes between regular and inexperienced readers

The national patient survey related to medical records online has resulted in a new publication. This one is focusing on older patients and their use of the system. The paper is a collaboration with the HIBA project in Finland led by professor Isto Huvila. The team behind the paper also included Jonas Moll, Heidi Enwald, Noora Hirvonen and Rose-Mharie Åhlfeldt.

The results are not super surprising, but still relevant. Older patients are more likely to use the phone when seeking clarification, whereas younger people use the internet. There are clear clear age differences shown in the data.

The abstract is coped below. And the full paper is available online: http://www.informationr.net/ir/21-1/paper706.html#.W_ff4XpKhZE

Abstract

Introduction. Patient accessible electronic health records can be used to inform and empower patients. However, their use may require complementary information seeking since they can be difficult to interpret. So far, relatively little is known of the information seeking that takes place in connection to health record use, and especially the way it varies in different age groups. A better understanding of patients’ preferences of where and how to find explanatory information provides valuable input for the development of health information provision and counselling services.

Method. The analysis is based on the results of a national survey of Swedish individuals (N=1,411) who had used a national patient accessible electronic health record system (Journalen).

Analysis. The data were analysed in SPSS 24.0 using Kruskal-Wallis tests for detecting group-wise differences and Jonckheere-Terpstra tests for discovering age-related trends in the data.

Results. Older patients were more likely to use a telephone and younger patients to use social contacts to ask for clarification. Generally, older adults born between 1946–1960 appear as passive information seekers.

Conclusion. Age groups differ in their preferences on how to seek clarification, which underlines the importance of a better understanding of individual differences in delivering not only technically but also intellectually accessible health information. Calling by telephone could be a habit of present older generations whereas, to a degree, searching information online could be a comparable habit of current younger generations.

Investigations in Primary Care – this Years’ IT in Society Project

I am one of the faculty scaffolding students in the course “IT in Society”. I work together with Cary Laxer, Anne Peters and Mats Daniels on the course. This is a course where students work on a joint project together with Region Uppsala. Region Uppsala is a politically managed organization responsible for health, public transport, culture, and regional development issues. According to their web they work with the county’s municipalities, colleges, business and other actors to create the best conditions for us as residents. The Region comes up with a burning hot topic for the students to investigate, and this year they have chosen primary care.

Primary care in Sweden has quite an awful situation, and there are lots of people who quit their jobs and move to other part of health care. This results in an even worse situation for those who stay in primary care who for example get more patients, and the costs for hiring temporary staff is alarming. The number of patients increase every year due to an ageing population that live longer with multiple kinds of deceases. Turnaround of staff in primary care makes patients meet different doctors more often than the same doctor when needing care. Also they experience that primary care cannot offer an appointment quick enough when you are ill. This also results in a new market for digital doctors where patients can get an appointment using for example their iPad and a video meeting. These appointments are easy to get, and often within 30-45 min you get to meet a doctor and at the same cost as going to a primary care unit. However, studies have shown that the digital doctors get to meet patients that want advise of a kind that you traditionally in Sweden do not see a doctor for getting. This Has lead to enormous costs for society, but at the same time to patients thinking that they get good service.

My team in the IT in Society course this year are looking into the situation for frequent patients and primary care. This means people who frequently have the role to be patients and who have for example a chronicle condition such as diabetes. Often these people are older, as in the picture in the blog post, and many are not very prone to use technology but prefer people. In this they are investigating connected health as a phenomenon, and clinical support systems from the perspective of shared decision making. I am really enjoying the project this year, and most of the students are really brilliant and work hard.

New Publication: Online Patient Accessible Electronic Health Journals Increase the Fear of Threat and Violence

We have a new and very interesting publication! This one is based on the great master thesis by Ulrika Åkerstedt and written together with her, Ture Ålander and Jonas Moll.

Digital patient records increase the fear of exposure to threats and violence in 40 percent of healthcare professionals in psychiatry and emergency care. This is shown a new study from my research team. However, the study shows no connection between the occurrence of threats and violence and digital patient records one year after the introduction.

Critical voices mean that digital patient records increase the risk of personnel being exposed to threats and violence and that they face greater threats to threats and violence. The problem of increased risk is described as being linked to the patient being able to get the full name of the person who provided care through the system. This is especially worrying in activities where the risk of being exposed to threats and violence is already high, such as emergency care and psychiatric care.

Our recently published study examined whether patients whose patients had access to the patient portal experienced greater threats to threats and violence and were subjected to more threats and violence. The survey was conducted one year after digital patient records were launched in Uppsala.

A total of 174 people responded to a web survey (35% response rate). 83 people were from an emergency department whose patients had digital records, and 91 were from a psychiatric department whose patients did not have it. Nearly two thirds of respondents were exposed to threats and violence in the last year.

The study shows no links between the occurrence of threats and violence and digital patient records, but that does not mean that that link does not exist. On the other hand, there is a clear link between digital patient records and healthcare professionals’ concerns about threats and violence

The study also shows that 40 percent of those working in these businesses believed that the risks of threats and violence had increased after launch. There was also a difference in experience between the occupational groups that responded to the survey. Nurses experienced greater risks than doctors. However, the study did not show that more events of threat and violence occurred after the launch. Only one person in the study reported that the patient’s access to the journal had played a significant negative role in relation to an incident.

I think that the concern of healthcare workers for an increased risk of threats and violence must be taken seriously and taken care of by county councils and regions. One needs to balance the healthcare staff’s working environment with the patient’s need for information. Here it would be good to find out how important it is for patients to see the names of healthcare staff.

The survey has been conducted by researchers from DOME and the goal is to create and disseminate knowledge about the introduction and use of eHealth services.

The paper is open access and can be found here: https://www.cogentoa.com/article/10.1080/23311908.2018.1518967

 

Excellent PhD Thesis by Dr Grünloh

Last week I attended Christiane Grünloh’s great PhD defence. Her thesis is a substantial contribution to knowledge in the area of eHealth services for patients. I especially think that the results related to patient empowerment is interesting and well worth reading.

Chrisitane Grünloh is really an excellent researcher. She is both brilliant and has the grit to pull through qualitative analysis of very high quality. The abstract of her PhD is copied below, and you find the thesis here. Christiane has also written a blog post about it found here. The defence was one of the best I have attended. Not only did Christiane do an excellent job shining like a bright star, her opponent was also brilliant and very well read up on her work. Taken together this was a great learning opportunity for everyone in the audience including me.

The picture for this blog post is borrowed from Twitter and Christiane’s twitter stream. If you need inspiration to write a PhD thesis of the same quality as Christiane has, then follow her on Twitter! 

Abstract

Healthcare systems worldwide face organisational and financial challenges due to increasing number of people with chronic conditions, increasing costs, and an ageing population. eHealth services have the potential to address some of these challenges, for example, by supporting patients who are engaged in self-care, improving quality of care, and reducing medical costs.

In 2012, Region Uppsala in Sweden launched an eHealth service that enabled patients to access their electronic health records through the Internet. The launch of the service was accompanied by strong criticism from healthcare professionals (HCPs) and was heavily debated in the media. Patients on the other hand were very positive towards the service.

Albeit promising, the potential of Patient Accessible Electronic Health Records (PAEHRs) cannot be realised if HCPs still have reservations towards the service and their concerns are not fully understood. The purpose of this research is therefore to enhance our understanding of how physicians view PAEHR in relation to both their work environment and the level of patient participation. Furthermore, the aim is to shed light on whether their concerns related to patients’ well-being have materialised in practice and how patients view and make use of the service. Finally, this thesis identifies implicated human values and value tensions related to PAEHR.

To enhance our understanding of the physicians’ perspective, semi-structured interviews with 12 physicians in Uppsala were thematically analysed. A national patient survey was conducted to investigate patients’ use of and their experiences with PAEHR. Furthermore, empirical and conceptual investigations were carried out to identify human values and value tensions.

The results of this research show that the physicians’ assumptions and views of PAEHR and its consequences for patients were different from the views and actual experiences of patients using the PAEHR system. The physicians were mainly concerned about potential increase in their workload and that it could be harmful for patients to access their Electronic Health Record (EHR), for example, as it might evoke anxiety or worry. The vast majority of patients appreciated timely access to their results, felt more involved in their care, and read their records to become more involved. The investigation of human values associated with PAEHR identified values such as Ownership & Property, Professional Autonomy, Responsibility, Human Well-Being, Accountability & Transparency, and Trust. Furthermore, value tensions were identified that may occur between direct and indirect stakeholders (here: patients and physicians), or are related to an interpretation of PAEHR.

This thesis contributes to current research on eHealth in Human-Computer Interaction (HCI) by instigating a critical discussion of values associated with eHealth technologies that might be perceived as conflicting given a stakeholder’s framing of the technology. For example, tensions that emerge between values that prioritise placing the responsibility on a physician for their patients versus a value system that prioritises patient autonomy. The findings of this thesis suggest that while policymakers and government agencies adhere to a system of values that place a premium on patient empowerment, paternalistic tendencies are still present among physicians. However, an eHealth service like PAEHR is an important first step towards patient participation. The results of this thesis suggest that the support of patient participation in their own care through PAEHR outweighs the potential harm.

 

Writing Full EU Project Proposal Instead of Having a Vacation

My vacation is a bit postponed this year. Our pre-proposal for a co-funded project with Gender-Net Plus was accepted!!! :-))  And now I am writing a full proposal instead of having a vacation.

The team onboard writing the proposal is indeed excellent, and we span all research areas relevant for the idea of the proposal. I will not write the details here in the blog as I’m not sure that that would be ok given the review process of the proposals.

Last week we all met at Arlanda airport to discuss the project details, and to agree on the set up of the project. It was indeed a productive day with lots of ideas. It was also a day full of great Swedish fika and nice food.

If we are funded we will be working together in this project in eHealth for the coming three years. I will be the coordinator of the project, but I have very experienced help in my team and I think that I will do fine.

ACM SIGCHI EIT Health Summer School in Interactions Magazine

The current number of the magazine Interactions has an article about the EIT SIGCHI summer school that we organized last summer in Dublin and Uppsala/Stockholm.

I must say that the summer school gave me very good new contacts, and I have enjoyed following the research of many of the participants on Twitter since then. For me the summer school resulted in me being the examiner of several of the PhD thesis that has been put forward since last year, and also in Leysan Nurgalieva visiting us in Uppsala. Really great!!

You find the short article here