PATH - Participatory eHealth and health data

The research group at the Sigtuna Foundation, 2025
Our group supports the continuous transformation of healthcare in Sweden and internationally through participatory research on eHealth and health data. We work at the intersection of health sciences, implementation science, pre-clinical research, health informatics, and action research. Our work includes evaluation of ethical, legal and social consequences of eHealth tools in collaboration with all stakeholders: patients, informal caregivers, healthcare professionals, researchers, healthcare organisations, industry, policymakers, and governmental authorities.
The perspectives of patients and informal caregivers is key to our research, so we support both patient-driven innovation and research as essential components to improve health and well-being.
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Group members
Publications
Part of JMIR mhealth and uhealth, 2026
Part of FRENCH JOURNAL OF UROLOGY, 2026
- DOI for Good knowledge, poor behaviour?: Pelvic floor understanding and continence practices related to continence in nulliparous women in France
- Download full text (pdf) of Good knowledge, poor behaviour?: Pelvic floor understanding and continence practices related to continence in nulliparous women in France
Quality in Use in Connected Mental Health: Protocol for a Systematic Mapping Study.
Part of JMIR Research Protocols, 2026
Part of Frontiers in Public Health, 2026
- DOI for "The more you learn, the more you can influence" — learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden
- Download full text (pdf) of "The more you learn, the more you can influence" — learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden
A growing concern: Online access to minors’ health records
2025
A proof-of-concept study for patient use of open notes with large language models
Part of JAMIA Open, 2025
- DOI for A proof-of-concept study for patient use of open notes with large language models
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Part of BMC Medical Ethics, 2025
- DOI for Adolescent and parental proxy online record access: analysis of the empirical evidence based on four bioethical principles
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Adult Proxy Online Record Access - Differences Across Four Countries.
Part of Studies in Health Technology and Informatics, p. 216-220, 2025
Cancer Patients' Sharing of Electronic Health Records with Informal Caregivers
Part of Studies in Health Technology and Informatics, p. 1291-1295, 2025
- DOI for Cancer Patients' Sharing of Electronic Health Records with Informal Caregivers
- Download full text (pdf) of Cancer Patients' Sharing of Electronic Health Records with Informal Caregivers
Part of Journal of Medical Internet Research, 2025
- DOI for Changes in documentation after implementing open notes in mental health care: Pre-post mixed methods study
- Download full text (pdf) of Changes in documentation after implementing open notes in mental health care: Pre-post mixed methods study
Clinical competencies for using generative AI in patient care
Part of The BMJ, 2025
Part of Intelligent Health Systems, p. 263-267, IOS Press, 2025
- DOI for Co-Designing a "win-win" in Predictive AI: First Results from Interviews and Focus Groups with Persons with Parkinson's Disease
- Download full text (pdf) of Co-Designing a "win-win" in Predictive AI: First Results from Interviews and Focus Groups with Persons with Parkinson's Disease
2025
Part of Journal of Medical Internet Research, 2025
Engagement and attrition in digital mental health: current challenges and potential solutions
Part of npj Digital Medicine, 2025
- DOI for Engagement and attrition in digital mental health: current challenges and potential solutions
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Part of JMIR Aging, 2025
- DOI for Experiences of Older Mental Health Patients and Their Care Partners Using a Proxy Account to Access Open Notes: Qualitative Interview Study
- Download full text (pdf) of Experiences of Older Mental Health Patients and Their Care Partners Using a Proxy Account to Access Open Notes: Qualitative Interview Study
Part of Digital Health, 2025
- DOI for General practitioners’ adoption of generative artificial intelligence in clinical practice in the UK: An updated online survey
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General practitioners’ opinions of generative artificial intelligence in the UK: An online survey
Part of Digital Health, 2025
- DOI for General practitioners’ opinions of generative artificial intelligence in the UK: An online survey
- Download full text (pdf) of General practitioners’ opinions of generative artificial intelligence in the UK: An online survey
Generative AI and the changing dynamics of clinical consultations
Part of BMJ. British Medical Journal, 2025
Generative artificial intelligence in medicine: a mixed-methods survey of UK general practitioners
Part of BMJ Digital Health & AI, 2025
- DOI for Generative artificial intelligence in medicine: a mixed-methods survey of UK general practitioners
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Part of Journal of Medical Internet Research, 2025
- DOI for Generative Artificial Intelligence in Primary Care: Qualitative Study of UK General Practitioners' Views
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Part of Patient Education and Counseling, 2025
- DOI for 'Getting it write' in an era of online electronic health records access in primary care: A qualitative study exploring the needs and requirements of underserved patients and carers
- Download full text (pdf) of 'Getting it write' in an era of online electronic health records access in primary care: A qualitative study exploring the needs and requirements of underserved patients and carers
Global Health in the Age of AI: Charting a Course for Ethical Implementation and Societal Benefit
Part of Minds and Machines, 2025
Guidelines for Patient-Centered Documentation in the Era of Open Notes: Qualitative Study
Part of JMIR Medical Education, 2025
- DOI for Guidelines for Patient-Centered Documentation in the Era of Open Notes: Qualitative Study
- Download full text (pdf) of Guidelines for Patient-Centered Documentation in the Era of Open Notes: Qualitative Study
Part of JMIR Research Protocols, 2025
- DOI for Health Care Professionals' Experiences and Opinions About Generative AI and Ambient Scribes in Clinical Documentation: Protocol for a Scoping Review
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Part of JMIR Medical Informatics, 2025
Hear my concerns and I will take your recommendations seriously
Part of The BMJ, 2025
- DOI for Hear my concerns and I will take your recommendations seriously
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How generative AI affects patient agency
Part of The BMJ, 2025
Part of JMIR Research Protocols, 2025
- DOI for Impact of Connected Mental Health on the Work Environment of Mental Health Clinicians: Protocol for a Systematic Literature Review
- Download full text (pdf) of Impact of Connected Mental Health on the Work Environment of Mental Health Clinicians: Protocol for a Systematic Literature Review
Impact of Patient Online Record Access on Documentation: Scoping Review
Part of Journal of Medical Internet Research, 2025
2025
Implementation theory of AI-based fall prevention
2025
Part of Journal of Medical Internet Research, 2025
Part of 2025 IEEE 33rd International Requirements Engineering Conference Workshops (REW), p. 598-604, 2025
Noble Humbug?: Hard and soft laws on clinical placebo use
Part of Frontiers in Psychology, 2025
- DOI for Noble Humbug?: Hard and soft laws on clinical placebo use
- Download full text (pdf) of Noble Humbug?: Hard and soft laws on clinical placebo use
Open-label placebos for low back pain: unresolved challenges and next steps
Part of Pain Management, p. 629-632, 2025
Part of JMIR Human Factors, 2025
- DOI for Patient's Perceptions of a Centralized Virtual Ward for Remote Patient Monitoring in Primary Care: Qualitative Study
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Part of Annals of the Rheumatic Diseases, p. 1620-1621, 2025
Part of BMC Health Services Research, 2025
- DOI for Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden
- Download full text (pdf) of Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden
Part of JMIR Pediatrics and Parenting, 2025
- DOI for Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study
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Part of JMIR Mental Health, 2025
- DOI for Placebo, nocebo, and machine learning: How generative AI could shape patient perception in mental health care
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Part of BMJ Open, 2025
- DOI for Prevalence and types of errors in the electronic health record: protocol for a mixed systematic review
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Part of Studies in Health Technology and Informatics, p. 929-933, 2025
Part of JMIR Research Protocols, 2025
- DOI for Research Participants’ Engagement and Retention in Digital Health Interventions Research: Protocol for Mixed Methods Systematic Review
- Download full text (pdf) of Research Participants’ Engagement and Retention in Digital Health Interventions Research: Protocol for Mixed Methods Systematic Review
Part of International Review of Sociology, p. 72-88, 2025
- DOI for Seeking public assistance to escape violence: a study on relocation co-created with women with lived experience of homelessness
- Download full text (pdf) of Seeking public assistance to escape violence: a study on relocation co-created with women with lived experience of homelessness
Spetspatients are helping to reshape healthcare
Part of BMJ. British Medical Journal, 2025
Part of Journal of Medical Internet Research, 2025
Part of Frontiers in Psychology, 2025
- DOI for Talking placebo: a qualitative study of patients' attitudes toward open-label placebo implementation into clinical practice
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The Evolution of Patient Empowerment and Its Impact on Health Care's Future
Part of Journal of Medical Internet Research, 2025
- DOI for The Evolution of Patient Empowerment and Its Impact on Health Care's Future
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Part of Studies in Health Technology and Informatics, p. 939-943, 2025
- DOI for The Gender Gap in EHR Experiences and Preferences: Results from an International Cross-Sectional Survey of Patients.
- Download full text (pdf) of The Gender Gap in EHR Experiences and Preferences: Results from an International Cross-Sectional Survey of Patients.


