Category Archives: eHealth

‘I do not share it with others. No, it’s for me, it’s my care’ – On sharing of patient accessible electronic health records

A few years back i organised a PhD summer school together with Gavin Doherty, Jan Gulliksen, Conor Linehan and a whole bunch of very well known HCI people were lecturers. The course was is presented in this paper if you are curious: “ACM SIGCHI/EIT health summer school on user-centered design in e-health”. The course consisted of one week at Trinity College in Dublin, and one week in Stockholm at the Royal Institute of Technology and I participated in the background during the whole course. During this course I got to know several inspiring people, one of which is Leysan Nurgaleva. She spent an internship in my research group, and we wrote a paper together that has been in review since two years or so (!). You can read about Leysan’s experience from this collaboration around the paper here.

Last week the paper was finally published! It is really an interesting, and relevant, paper on patients’ sharing of their information to family and friends. The research questions answered are:

RQ1. What values, considerations, and conditions motivate patients to share or not to share medical records?
RQ2. What are the critical issues constraining the sharing of medical information in person and digitally?

Among other things the results showed that 1) Older and less educated patients share more. 2) Health conditions and illnesses affect sharing and 3) Sharing is connected to its perceived usefulness

You find the abstract below, and the full paper is found here.

Abstract: This study explores patients’ perspectives on sharing their personal health data, which is traditionally shared through discussions with peers and relatives. However, other possibilities for sharing have emerged through the introduction of online services such as Patient Accessible Electronic Health Records (PAEHR). In this article, we investigate strategies that patients adopt in sharing their PAEHR. Data were collected through a survey with 2587 patients and through 15 semi-structured interviews with cancer patients. Results show that surprisingly few patients share their information, and that older patients and patients with lower educational levels share more frequently. A large majority of patients trust the security of the system when sharing despite the high sensitivity of health information. Finally, we discuss the design implications addressing identified problems when sharing PAEHR, as well as security and privacy issues connected to sharing.

Digital Work Environment and The Health Care Sector: Presentation at Vitalis 2020

Magdalena Stadin from Jönköping University, David Borgestig from Region Uppsala and I will be presenting at Vitalis 2020!

The abstract for the talk (transpated from Swedish)

Today, health care in Sweden is largely digitalised. The data that the business needs to function such as clinical data on patients such as administrative data on personnel, resources and costs are now primarily in digital form. This means that most healthcare and administrative processes are performed using one or more computer systems. This has had major consequences for the health care workers’ work environment.
This presentation begins by explaining what the digital work environment consists of, and some of the work environment problems that have arisen in connection with digitalisation. The digital work environment includes all the different digital systems required to carry out one’s work. The digital work environment can have a major impact on the physical, mental, and social work environment. For example, clicking and typing with a keyboard can cause physical problems, such as musculoskeletal disorders. Poorly designed systems can increase the cognitive load and lead to brain fatigue and overload, which can contribute to fatigue. The transition to digital communication can also change social patterns and power relations in depth.

The presenters have many years of experience in research on digitalisation of healthcare from a work environment perspective and will give examples from the studies they participated in as an introduction to the presentation.

In the presentation we will also elaborate on two different case studies we have done on digitization and the working environment. The first study is about a pilot project in primary care around triaging patients with the help of a chat function. What are the advantages and disadvantages of the staff with the new service? How is the staff’s working environment affected by the change? What can be learned for future implementations in primary care. The second study is an interview study with leaders in health care and their experiences of aspects in the digital work environment that are perceived to contribute to stress and frustration, and how these aspects are handled in a concrete manner. A further theme highlighted by the second study is what improvement measures would be required for the digital work environment to be improved, from the leaders’ perspective.

Finally, we will make recommendations for working with digital work environment in health care.

Image by Gerd Altmann from Pixabay

Examiner of Anders Klingerg’s PhD thesis on mobile teleconsultations in acute burn care

Anders Klingberg has defended his thesis on mobile teleconsultation in acute burn care, and I was one of the external examiners. The PhD is in public health sciences from Karolinska Institutet, but it includes several papers on acceptance and user experience and that is where my competence is.

The process at Karolinska is that the papers are read and accepted by the committee some months before the defence, and a chair of the committee sees to it that a paper is signed about the quality of the papers. I was the chair this time, and coordinated the others’ comments.

The thesis is based on four papers, of which three were accepted before the defence. The topic of the thesis is super relevant, and the interdisciplinary approach of the research is indeed impressive. The ultimate aim of the thesis is to improve acute burn injury care in South Africa. Congratulations to a very interesting PhD thesis, and an excellent PhD defence!

Anders Klingberg is in the middle of the picture, together with me and Mårten Kildal who also was one of the examiners.

Below is a copy of the abstract from thee thesis – a recommended read! You find the full thesis here:

https://openarchive.ki.se/xmlui/handle/10616/46876

ABSTRACT

Background: Burn injuries are a global health problem with severe consequences for those affected and nearly 95% of all burns occur in low- and middle-income countries (LMICs). While minor burns can be treated locally such as at the emergency department, severe burns need transfer to a specialist burns centre. However, non-specialists often lack the training and experience to accurately diagnose and manage burns. While smartphones have been shown to be feasible for remote consultations between frontline providers and burns specialists, barriers may impede successful uptake.

Aims: The aims of the thesis were to deepen the knowledge about referral patterns of patients with burns in resource poor settings, and to study perceptions and experiences among emergency staff’s use of smartphones as a diagnostic support to improve the assessment, initial care and referrals of patients with burns.

Methods: Study I was a retrospective case study of 871 paediatric patients with burns at a trauma unit in Cape Town. Demographic, injury characteristics, and disposition was used to determine whether patients were referred according to local criteria. Study II was a mixed- methods study of the usability of a smartphone app (the Vula app) for burn injury consultations. Twenty-four emergency doctors and four burns specialists were enrolled in the study. A think-aloud study was conducted with all participants and their interaction with the app was video-recorded and later analysed using content analysis. The twenty-four emergency doctors also completed a usability questionnaire. Study III was a qualitative study where semi-structured interviews were conducted with 15 doctors regarding their experiences using the Vula app for burn consultations and referrals. The interview-guide and thematic analysis were informed by the Normalisation Process Theory. In Study IV, fifty-nine frontline health workers completed a questionnaire to assess their intention to use the Vula app. The questionnaire and the analysis were informed by the technology acceptance model (TAM).

Results: Study I. Most referred patients fulfilled the referral criteria. However, of those treated and discharged from the trauma unit, 8 out of 10 children also fulfilled the criteria for referral. In Study II, the usability test and questionnaire showed that the doctors perceived the Vula app to be easy to use and useful. However, some problems were identified mainly related to navigation, and understanding of meaning of icon’s terminologies. Some users also said that predefined options in the app limited their ability to express their clinical findings. Study III revealed several barriers and promotors for successful integration of the Vula app. Promotors included the already prevalent practice of using smartphones, that it was easy to use and the learning opportunity that the app offered. Barriers to successful integration included; inconsistent use of the app across specialities and lack of information, policies and infrastructure to support the users. In Study IV, almost all health professionals used smartphones in their work and were positive towards using Vula. Access to wireless internet and access to smartphones was mentioned to be a barrier.

Conclusions: Identifying patients with burns who are in need of referral is challenging. Mobile teleconsultations is therefore a way of assisting with diagnosis and initial management. The Vula app was easy to use and perceived to be useful, but several barriers need to be addressed for the app to become an integrated part of the practice in emergency care. In settings with considerably fewer resources, these barriers will likely be even more important to address prior to implementation.

Writing Book Chapters for a Forthcoming Book in Medical Informatics

Martin Rydmark and Göran Petersson are editors of a forthcoming Swedish book for students and people interested in learning about Medical Informatics. The book will be an updated version of a very popular book written in 1996 named Medicinsk informatik with Liber utbildning as the publisher.

I will be contributing to two of the chapters in the book:

One about usability and the work environment for health care professionals written together with Diane Golay and Minna Salminen Karlsson
One focusing on person centred care and eServices written together with Axel Wolf, Isabella Scandurra and Maria Hägglund

We will be working with these book chapters in the fall and the first deadline is in November. At this point the work consists of being creative, as the illustration of this blog post is supposed to highlight. We are discussing, and planning the content of each chapter using different colours for the areas that we are going to write about.

For me writing a course book is a new experience, and I also very seldom write in Swedish so this will be something new.

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.