Category Archives: patient empowerment

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.

 

New Study : Managers and the Implementation of Medical Records Online

I am about to start a new study on the implementation of medical records online in different counties and regions in Sweden. This study is supported by INERA which is the coordinating organisation for you health services nationally in Sweden. It is also partly funded by my work in the NordWIT Centre.  The study is multidisciplinary, and there will be researchers coming from gender studies, medical Informatics and human computer interaction collaborating in the analyses and writing up of the data.

Next week I will do my first interviews, and later on we will distribute a survey to all regions and counties in Sweden. This study will focus on the implementation process and what happened in different parts of the country. The study will also focus on the experiences and careers of the managers and leaders who works with this.

The launch of medical records online for patients was indeed controversial in Sweden. Many physicians and nurses were worried that patients would read and become upset and anxious. Other concerns related to the work environment in healthcare, and the increased need of support from patients who might read their medical directors and be worried. At the same time many patients appreciated the system, and today the system is used by more than 1 million people in Sweden.

Sweden consist of autonomous County council and Regions when it comes to IT and eHealth. This means that they all individually decided what to show to patients, when to show it and also what not to show. In our study we will be investigating this process and what happened.

I am so thrilled about doing a study on my own again! Lately I’ve been supporting others very much, but now it’s finally my turn to do it myself again!

I will surely blog more about this in the future 🙂

The Background to the IT in Society Class

Now we have kicked off this year’s IT in Society Class. There will be a series of blog post about this course this fall.

Some of the things that make this course very special are:

  • Region Uppsala act as a real client to the student project
  • We get a topic for the course from the client very year
  • It is a global distributed project.
  • The students come from Rose-Hulman Institute of Technology and from Uppsala University.
  • It is based on a pedagigical concept called Open Ended Group Projects

The IT in Society unit was introduced into the IT engineering degree program as a response to industry feedback collected using questionnaires and meetings prior to commencement of the degree program in 1995.  This input emphasized that scaffolding the development of teamwork and communication skills were high priority areas for our industry stakeholders.

Running this course unit has been a challenge every year since 1998, and it has been a quite inspiring challenge.   The open-ended group project idea suited this course unit well. But the (for the students, who had experienced a highly technical preparation in most of their other degree course units) unusual content (e.g. societal aspects) added complexity to setting up a productive learning environment.  Much effort over the years has been put into devising appropriate scaffolding to support the students, without compromising the underlying ideas behind the open-ended group project concept. There will be more info about this concept later on. 

There is a whole series of research publications based on this course. The most prominent one is Mats Daniel’s PhD thesis found here