Category Archives: eHealth

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

Submitted Programme Application

This week I submitted an application for funding of a research programme related to equal communiation using ICT for foreign-born people. The programme will include three complementary research areas and addresses an urgent societal problem. The three areas are caring sciences, computer science and health economics.

The writing process was really very much fun this time. I collaborated with a full professor of Caring Science, and we had a great time even though we don’t know each other that much. The full professor of Caring Science is the Principal Investigator of the application.

In the programme we will work with the exploration of communiation needs of foreign-bron people with chronical diseases, and then continue with implementation of ICT related support to improve communication. The programme will run for six years, if funded, and will include three PhD students and two post doc positions some of which are in caring sciences and others in computer science.

When writing applications for funding, chances are quite low that you get funded. However, if you don’t submit any applications there will for sure be no money….

I really hope that we get funding for this programme and that I can get the possibility to explore this area!!

Half-time Seminar by Anna Haufmann

Last week I was invited to discuss Anna Haufmann’s half-time seminar in Caring Science at Uppsala University. A half-way seminar at Uppsala University has the purpose of giving feedback and input on the work done, but more importantly on the plans forward. It is not an occasion with a formal examination. PhD education is a wildling road forward, and most of all this occasion is a possibility to get some input on possible ways forward.

Anna Haufmann did an interesting and professional presentation of her work so far. This work has included one published paper, and one paper that is in progress. The published paper describes the experiences from developing of an internet based intervention for adult cancer patients that are diagnosed with depression. The intervention was planned with patients and different health care professionals. I especially liked the fact that they had included patients in the design process, and that their team was multidisciplinary! The paper that has not been submitted yet shows great potential to be a very good journal publication, or even two journal publications. It is an interview study with rather open questions to patients related to their experiences from the intervention. I will not write more about it here due to the future review process, but the paper(s) will be worth reading 😃.

Anna Haufmann also presented the planned work ahead that includes two more journal publications. They will include studies on the effects of the intervention, and statistical methods will be used.

The seminar was very nice, and the other examiners were from very different dicsiplines. This made the discussions lively and also more interesting! Anna Haufmann acted very professionally, and I am confident that her PhD thesis will be an interesting read!

I hope that Anna Haufmann felt that she got good feedback, and that she also got the energy to write up the last parts of her PhD!

Using Themes from Qualitative Interviews as Lens to Analyse Survey Data – Workshop paper

Methods are truly important when you do research, and depending on your research tradition there are indeed many strong opinions about what is a good and bad method. Generalizability, validity and reliability are for some the only quality criteria possible. And if you do an interview study you need an enormous number of interviews according to some people.

Some would argue that human-computer interaction is indeed a melting pot of different opinions and perspectives on methods. Indeed, I have seen some very harsh comments on some of the methods that I have used from people with a completely other world-view. The problem when I get these comments is that I don’t really know what to write as an answer. Please take a course in qualitative research and relevant quality criteria for that kind of research is perhaps not the most politically correct rebuttal text to write.

One of my favorite stories related to methods is from my supervisor, Jan Gulliksen who was a part of a long review process where one other researcher claimed that the method was un-important:

I don’t care that the method is flawed. I like the results!

 

Before the Christmas holiday Christiane Grünloh presented a workshop paper that we wrote together that presents a mixed methods approach to analyzing interviews.

“Human-Computer Interaction (HCI) is a melting pot of different theories and methods. The combination of qualitative and quantitative methods in studies is still quite rare, but has become more and more common. In this paper, we present our experiences from doing a combination of quantitative and qualitative analysis to shed some light on patient accessible electronic health records. We conducted a national survey to patients to learn about their experiences of accessing their electronic health records. The questionnaire was informed by previous interviews with physicians related to effects on their work environment, and we made use of identified themes from that study as a lens to analyse survey data.”

 

You find the paper free for download here. 

 

 

 

Why are Ambient Assisted Living Technologies so Difficult to Develop?

I was appointed as one of the external reviewer of Jean Hallewell Haslwanter´s PhD dissertation with the title “User-Centered Development of Sensor-based Systems for Older People”. I must say that this was indeed an interesting thesis to read and I strongly recommend it for anyone who is interested in healthcare technology and user-centered design.

Ambient Assisted Living (AAL) is a technology that has been proposed to help society with problems related to an ageing population, as it could support older people to live at home instead of moving into elderly homes. However, despite the fact that many IT projects and companies have been working with the development of this technology, and large amounts have been invested in AAL, few such technologies has reached the market. In her thesis, Jean Hallewell Haslwanter addresses the issue from a user-centered design perspective and her work aims at understanding why AAL technologies have proven so difficult to develop.

The thesis has a substantial empirical contribution as it studies the development of AAL systems. One interesting finding is that the complex and multifaceted descriptions of the users fade away as the project continues, and is replaced by stereotypes of older people. Other contributions include recommendations for practitioners working with development of AAL technology.

Jean Hallewell Haslwanter’s dissertation is a monograph, but she has 13 research papers that are previously published. Many of the papers are conference papers, of which many appear in highly ranked international conferences. There are also conference papers that have been turned into journal papers. If you are interested you can find these publications online at the link.