Category Archives: DOME

‘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.

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.

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.

 

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!

Excellent PhD Thesis by Hanife Rexhepi

Some people are as magic as the sky in the photo for this blog post. These people are more brilliant than the rest of us, and it is a joy to discuss with them and learn from them. One such person is Hanife Rexhepi from Högskolan i Skövde. Not only is she knowledgeable and professional, but she is also a good team player and has great communication skills. I have worked with Hanife Rexhepi in many studies the last years as a part of the DOME consortium.  And I am looking forward to more collaborations in the future.

Next week Hanife Rexhepi will defend her excellent thesis that includes TWO papers awarded “Best paper” which says something about the quality of her work. I am really looking forward to listening to her presentation and to the discussion. I am sure that I will get lots of new ideas and insights! I will bring my iPad and take notes 🙂

Hanife Rexhepi has done research related to information systems in health care. The eight papers in the thesis are from her extensive work in the area, and are based on several research projects. Among other things her thesis contains an interesting study on cancer patients and their use of medical records online. This study has been presented on several occasions, one of which is found here. The study has also been widely discussed in media such as in this well written blog post by Christiane Gruenloh.  Hanife Rexhepi is also very active on Twitter and you find her Twitter account here

See you in Skövde at Hanife Rexhepi’s PhD defence on Tuesday the 22 of May 2018.

DOME meeting in Örebro

DOME is the name of the consortium that does research on Patient Accessible Electronic Health Records. We are a group of around ten active researcher coming from five different universities in Sweden. It is really a well functioning research consortium, and we meet every three weeks on Skype and once per semester in real life.

This semester we are meeting in Örebro two days. The first day will be dedicated to a forthcoming application for a reserach grant. It is Rose-Mharie Åhlfeldt who coordinates us in this work, and we have been given tasks in advance related to planning of the application. In the eventing we usually meet at a nice restaurant and have dinner together. Day two will mostly be dedicated to planning of the VITALIS and MIE events in April. We will have presentations together with INERA related to our latest studies, and we’ll spend some hours planning this event.

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. 

 

 

 

Radio Interview on Medical Records Online

I was interviewed on the P4 Västmanland radio the other day. The reporter was interested in patients reading their medical records online, and the research in the DOME consortium, and asked me questions such as:

  • Do patients contact health care with more questions?
  • What does reserarch say about getting cancer results, or other negative results from Journalen?

You find the interview 8 min into this radio program

 

EIT Summer School in Dublin

It’s been a great week in Dublin so far, despite quite cloudy days and occasional rain. The week has been full of good lectures related to the eHealth from different perspectives. The lecture hall in itself was amazing, and during one lunch break we went to visit the old library which was an amazing building (se pictures of this blog)!

There has been many great lectures this week, and I can’t write about them all. Among other things Ann Blandfords presentation of a study made by Hanna Schneider (Msc) of patients different perspcecitves on a system for communicating with health care and the four categories of roles they found in their interveiw material: 1) Controller 2) Collaborator 3) Cooperator 4) Avoider. In this study the self determination theory (Ryan & Deci) was used. I would love to read up some more on that one!

Jonas Moll from the HTO group has written several more detailed blog posts about the lectures and the content. Hop on to his blog and read about these 🙂

Day 1 

Day 2 

Day 3 

 

Trinity books-2362214__480.jpg

In a few weeks the EIT summer school will meet again in Stockholm and Uppsala. Jan Gulliksen and I have worked out a good schedule that will include a visit to the Visualisation studie at KTH and other things. The day in Uppsala will be organised in conjunction with Region Uppsala and the EPJ division, as well as the DOME consortium. There are indeed good and interesting lectures coming up!