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Papers by Therese Scott Duncan

Research paper thumbnail of The effect of audit and feedback and implementation support on guideline adherence and patient outcomes in cardiac rehabilitation: a study protocol for an open-label cluster-randomized effectiveness-implementation hybrid trial

Implementation science, May 24, 2024

Research paper thumbnail of Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies

PubMed, 2018

In order to increase clinical trial participation, the reasons for participating need to be obser... more In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.

Research paper thumbnail of IntegrIT - Towards Utilizing the Swedish National Health Information Exchange Platform for Clinical Research

PubMed, 2017

This paper describes how the Swedish national Health Information Exchange platform can be used to... more This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.

Research paper thumbnail of Paving the way : the second generation of e-patients, their experiences, actions and driving forces

Research paper thumbnail of From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients

Journal of Medical Internet Research, Aug 15, 2019

Research paper thumbnail of Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions

BMC Health Services Research, Apr 26, 2023

Research paper thumbnail of Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Journal of participatory medicine, Nov 16, 2022

Research paper thumbnail of From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients (Preprint)

Research paper thumbnail of Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions

BMC Health Services Research

Background More knowledge is needed regarding the perceptions of healthcare professionals when en... more Background More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals’ attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. Methods A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. Results Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased ineq...

Research paper thumbnail of Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Journal of Participatory Medicine

Background Patient empowerment is an important concept and a movement toward person-centered care... more Background Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyz...

Research paper thumbnail of IntegrIT - Towards Utilizing the Swedish National Health Information Exchange Platform for Clinical Research

Studies in health technology and informatics, 2017

This paper describes how the Swedish national Health Information Exchange platform can be used to... more This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.

Research paper thumbnail of Additional file 2: of "You have to know why you're doing this": a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Survey questions. (DOCX 16 kb)

Research paper thumbnail of Additional file 1: of "You have to know why you're doing this": a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Interview guide. (DOCX 15 kb)

Research paper thumbnail of Paving the way : the second generation of e-patients, their experiences, actions and driving forces

Background: E-patients are described as patients and informal caregivers who are empowered, equip... more Background: E-patients are described as patients and informal caregivers who are empowered, equipped, enabled and engaged, and use digital solutions for their self-care and in healthcare contexts. Self-care can be understood as health related activities and behaviors regarding life styles and environmental aspects. The self-determination theory can be used to understand aspects of motivation and to provide an understanding for the basic psychological needs of persons, and how their autonomy, competence and relatedness are supported. Understanding e-patients also includes understanding their use of different consumer health informatics applications. These are digital solutions where patients and informal caregivers as citizens are the end-users. In the beginning of this century, e-patients were described as persons using the Internet to find information about their condition or to prepare for clinical encounters, as well as engaging in online communities. They were called the first g...

Research paper thumbnail of “You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

BMC Medical Informatics and Decision Making, 2019

Research paper thumbnail of The second generation of e-patients - An interview study to understand what drives them (Preprint)

BACKGROUND The first generation of e-patients were equipped, empowered, enabled, and engaged pati... more BACKGROUND The first generation of e-patients were equipped, empowered, enabled, and engaged patients and informal caregivers, who used the Internet for finding information or for communication, to solve a personal need. There is however a lack of knowledge about e-patients’ driving forces for engaging in their own health and care. This knowledge could be used to include patients’ care experiences to improve the care delivery process. OBJECTIVE The aim of this study was to explore the driving forces of e-patients to be actively engaged in their health and care, and how different eHealth solutions could be supportive in these processes. METHODS Semi-structured interviews with ten chronic patients and five informal caregivers were conducted. An online advertisement resulted in 67 individuals expressing an interest to participate. From these, 15 respondents were purposefully selected to guarantee broad coverage regarding age, gender, chronic condition, type of engagement and geographic...

Research paper thumbnail of Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies

Studies in health technology and informatics, 2018

In order to increase clinical trial participation, the reasons for participating need to be obser... more In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.

Research paper thumbnail of The effect of audit and feedback and implementation support on guideline adherence and patient outcomes in cardiac rehabilitation: a study protocol for an open-label cluster-randomized effectiveness-implementation hybrid trial

Implementation science, May 24, 2024

Research paper thumbnail of Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies

PubMed, 2018

In order to increase clinical trial participation, the reasons for participating need to be obser... more In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.

Research paper thumbnail of IntegrIT - Towards Utilizing the Swedish National Health Information Exchange Platform for Clinical Research

PubMed, 2017

This paper describes how the Swedish national Health Information Exchange platform can be used to... more This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.

Research paper thumbnail of Paving the way : the second generation of e-patients, their experiences, actions and driving forces

Research paper thumbnail of From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients

Journal of Medical Internet Research, Aug 15, 2019

Research paper thumbnail of Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions

BMC Health Services Research, Apr 26, 2023

Research paper thumbnail of Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Journal of participatory medicine, Nov 16, 2022

Research paper thumbnail of From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients (Preprint)

Research paper thumbnail of Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions

BMC Health Services Research

Background More knowledge is needed regarding the perceptions of healthcare professionals when en... more Background More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals’ attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. Methods A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. Results Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased ineq...

Research paper thumbnail of Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Journal of Participatory Medicine

Background Patient empowerment is an important concept and a movement toward person-centered care... more Background Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyz...

Research paper thumbnail of IntegrIT - Towards Utilizing the Swedish National Health Information Exchange Platform for Clinical Research

Studies in health technology and informatics, 2017

This paper describes how the Swedish national Health Information Exchange platform can be used to... more This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.

Research paper thumbnail of Additional file 2: of "You have to know why you're doing this": a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Survey questions. (DOCX 16 kb)

Research paper thumbnail of Additional file 1: of "You have to know why you're doing this": a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Interview guide. (DOCX 15 kb)

Research paper thumbnail of Paving the way : the second generation of e-patients, their experiences, actions and driving forces

Background: E-patients are described as patients and informal caregivers who are empowered, equip... more Background: E-patients are described as patients and informal caregivers who are empowered, equipped, enabled and engaged, and use digital solutions for their self-care and in healthcare contexts. Self-care can be understood as health related activities and behaviors regarding life styles and environmental aspects. The self-determination theory can be used to understand aspects of motivation and to provide an understanding for the basic psychological needs of persons, and how their autonomy, competence and relatedness are supported. Understanding e-patients also includes understanding their use of different consumer health informatics applications. These are digital solutions where patients and informal caregivers as citizens are the end-users. In the beginning of this century, e-patients were described as persons using the Internet to find information about their condition or to prepare for clinical encounters, as well as engaging in online communities. They were called the first g...

Research paper thumbnail of “You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

BMC Medical Informatics and Decision Making, 2019

Research paper thumbnail of The second generation of e-patients - An interview study to understand what drives them (Preprint)

BACKGROUND The first generation of e-patients were equipped, empowered, enabled, and engaged pati... more BACKGROUND The first generation of e-patients were equipped, empowered, enabled, and engaged patients and informal caregivers, who used the Internet for finding information or for communication, to solve a personal need. There is however a lack of knowledge about e-patients’ driving forces for engaging in their own health and care. This knowledge could be used to include patients’ care experiences to improve the care delivery process. OBJECTIVE The aim of this study was to explore the driving forces of e-patients to be actively engaged in their health and care, and how different eHealth solutions could be supportive in these processes. METHODS Semi-structured interviews with ten chronic patients and five informal caregivers were conducted. An online advertisement resulted in 67 individuals expressing an interest to participate. From these, 15 respondents were purposefully selected to guarantee broad coverage regarding age, gender, chronic condition, type of engagement and geographic...

Research paper thumbnail of Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies

Studies in health technology and informatics, 2018

In order to increase clinical trial participation, the reasons for participating need to be obser... more In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.