Several Ph.D. students are active in the DOME Consortium. These are partly financed by ongoing research projects. The purpose and set goals of the PhD projects are presented below, along with the respective studies they are associated with.

Ongoing PhD. projects

Patients access to their mental health records – Annika Bärkås

The purpose of this PhD project is to explore how patients’ access to their mental health records are experienced by patients and healthcare professionals, and what challenges and facilitators affect implementation and adoption. More specifically, we will;

• Analyse contextual factors influencing the implementation, adoption and use of open notes in mental health care (across SE, FI, NO, EE, US);
• Explore how healthcare professionals experience the implementation of open notes in mental health care (main focus SE, potentially also FI, NO, EE, US);
• Explore patients experiences of accessing their mental health records online (SE); 
• Compare patient experiences of accessing their mental health records online across contexts (SE, FI, NO, EE, US).

Implementation of Digital Health Services in Primary Care – impact on patient adoption and the digital divide – Irene Muli

The purpose of this research project is to describe how Digital Health Services (DHSs) are adopted and used by Swedish citizens/patients and to deepen our understanding of the role of healthcare professionals in this process. More specifically, we will;

• Identify and describe differences in DHS adoption based on factors related to patient/citizen characteristics;
• Explore patient/citizens rationale for use or non-use of DHS, and identify key characteristics for non-adoption; 
• Explore how healthcare professionals experience the implementation of DHS and whether their promotion (or non-promotion) of DHSs to different patient/citizen groups may have an impact on long-term adoption.

CFIR will be used to explore and analyse implementation of DHS’s while UTAUT will be used to investigate and analyse patients’ rational for use or non-use of DHS’s.

Parents’ and adolescents’ adoption and use of eHealth in Sweden – Josefin Hagström

The purpose of this PhD project is to explore experiences of access to electronic health records among adolescents treated for cancer, parents and oncology healthcare professionals. We will also explore non-participation in a study of an eHealth intervention.

More specifically, we will:

• Explore experiences of parents, adolescents and health professionals in regards to parents’ and adolescents’ access to their online health records.
• Examine rates of and reasons for opt-out in an internet-administered intervention for parents of children treated for cancer.

Completed PhD. student studies

Expectations of and experiences with eHealth services – Christiane Grünloh

This thesis investigates expectations of and experiences with eHealth services that allow users access to their health information. Although eHealth  services are en- dorsed by many politicians  and patients, they  are met with  strong resistance by health  care professionals. Lacking this  support  hinders the uptake  of the full po- tential of the service, especially with relation  to patient participation and empow- erment.

This research investigates the frames of reference that are constructed by stake- holders  in relation to eHealth  services, such as direct-to-consumer genetic testing and electronic health  records. The results  are  based  on empirical  data gathered during an experiment with media informatics  students in Germany, and from in- terviews with physicians  in Uppsala,  Sweden.

The eHealth  services in question were framed by the participants  of the con- ducted studies as potentially harmful  for its users.  The negative expectations were based  mainly  on  a  generalized  view of patients  as  not  su ciently knowledgable and  hence  unable to understand the health information provided by the service. The participants  in the reported  studies  (physicians  and  students  in their  role as designers) felt  a responsibility to prevent  any potential  harm  for the users of the eHealth  service.  Due to the framing  based  on assumed  negative  consequences for a supposedly  vulnerable  user group, the participants preferred to advocate against access rather than for patient empowerment  and participation. Accessing health information was associated  as holding little value for the users.

This research  enhances the understanding of the elements underlying this skep- ticism  and  concern. It shows that a specific view of patients and/or prospective users of an eHealth system can result in incongruent technological frames and value attribution. In line with participatory and value-sensitive design approaches  as well as the aim to increase technology acceptance, patients and health care professionals should not only be included in the design process but also engage in joint activities in order to enable reframing.

Process-oriented Information systems to support the active engagement of patients – Hanife Rexhepi, University of Skövde

Patient safety, quality of care and availability of relevant, uniform, monitorable information in electronic form can significantly be improved through the use of process-oriented information systems. Today, information systems (IS) are employed everywhere in the healthcare system, for different purposes and in different ways. IS offers numerous potential benefits in terms of improvements for patients, health and elderly care, professionals and decision-makers. However, IS-support has never been used to its full potential. Until now its use has been confined to delimited areas of the healthcare system. Process-oriented information systems have been demanded for more than 20 years and terms like continuity of care have even been discussed for more than 50 years. Yet, healthcare organizations are thus still characterized by autonomous IS-support that are based on individual and distinct departments’ information needs. Autonomous IS inhibits electronic health information exchange, it contains information redundancy and, perhaps most seriously, they focus on organizational problems rather than the needs of the patient and the patient process where several healthcare actors collaborate. In light of this, the first part of the dissertation will focus on how process-oriented IS support can be used to provide healthcare professional access to relevant, correct and up-to-date information about the patient at the right time.

In order for healthcare professionals to contribute with their expertise and to achieve good quality care it is not sufficient to provide IS solutions that offer healthcare professionals’ access to the right information, at the right place and at the right time. It is equally important for the future IS support to make use of patients own knowledge and to support their engagement. Through supporting IT systems, patients will receive information and guidance on an individual basis. They will also have the opportunity to become more actively involved in their care process and take more decisions of their own. The Swedish National Strategy for eHealth emphasizes the importance of giving patients, citizens and relatives’ trouble-free access to all-round information on health care, health issues and their personal health status in order for them to be actively involved in their care and treatment according to their abilities and circumstances. Experience shows that patients taking an active role in decisions related to healthcare provision and delivery will improve patient safety and the quality of care. To utilize the positive effects of IS support it is significant to explore patients ‘and health professionals’ perception of implementing IS services that support a process-oriented care, designed to actively involve patients in their care process. Expected outcomes of the second part of the dissertation is the development of a number of “computer based views” that visualizes and describes how each patient, using a process-oriented IS support, can be given access to information and guidance based on individual circumstances in order to increase participation in their own care. Additional expected outcomes of the dissertation will include a description of how such IS solutions affect patients’ security and privacy.

Implementation Processes in IT oriented Business Development – Thomas Lind, Uppsala University

The introduction of new IT systems means that organizations and people are affected in a number of ways. When organizations underestimate or overlook critical factors in the implementation of IT systems, this could have devastating consequences for the business, for example in the form of unrealized goals, lower efficiency and / or lower quality than before, and impaired work environment. Previous research has shown that regardless of the degree of usefulness and achievement of goals of an IT system there can be significant differences regarding benefit realization after the introduction of the system in physically and organizationally separated parts of a business. This can be derived to that the introduction of the IT system has been planned and implemented in different ways in different parts of the organization. The thesis therefore aims at the identified critical factors in the implementation of IT systems development methodologies that help organizations to plan and manage the implementation processes adapted to their own operations.

User participation in the development of public e-services – Jesper Holgersson, University of Skövde

Many public authorities are currently developing e-services for citizens without really considering the needs of the citizens. There are several examples of when developed public e-services has not been as successful as it was originally intended due to the fact that it requires a lot from the end user to use the e-service as intended. It is evident that increased user participation is necessities in order develop public e-service which is beneficial for both service providers and service consumers. However, it is important to recognize that user participation isn’t something that just occurs. Citizens are not always interested in participating and sometimes citizens are not always suitable as participants. The goal with the PhD thesis is to analyze how government agencies can apply user participation in public e-service development. The expected results from the work are a number of guidelines that may support government agencies when striving for increased user participation in public e-service development. The guidelines will point to which school of user participation that is the most suitable given a specific development scenario as well as what concrete techniques that may be used in order to implement user participation.

For DOME this thesis project is very interesting because DOME follows the introduction of eHealth services for citizens. The studies mainly concerns WPC – Development and implementation of IT-systems for eHealth services. First, in the study of “IT development of eHealth services” wherein the PhD student has been participating. Second, in an upcoming study in 2013 in which the evaluation of the developed guidelines for the development of e-services for the public sector will be implemented in the four participating counties / regions (LUL, VGR, Region Skåne and NLL) with a focus on e-health services such as e service for the public sector. A further study is planned for 2013. This study will be carried out, as in previous studies, in the four participating counties / regions. The focus of this study is to analyze techniques for requirements related to user participation from a government perspective. In the longer term, even a test study related to the thesis work to be carried out within DOME where applied guidelines for the development of eHealth services will be tested in the health care sector.