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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Gruppmedlemmar
Publications
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A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study
Part of JMIR AI, 2026
- DOI for A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study
- Download full text (pdf) of A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study
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Acceptable accuracy for medical AI: a survey of physicians and the general population in Sweden
Part of BMJ Health & Care Informatics, 2026
- DOI for Acceptable accuracy for medical AI: a survey of physicians and the general population in Sweden
- Download full text (pdf) of Acceptable accuracy for medical AI: a survey of physicians and the general population in Sweden
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Adoption and Use of Proxy Online Record Access in Sweden – A Retrospective Analysis
Part of Studies in Health Technology and Informatics, p. 1900-1904, 2026
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AI Based Motion Monitoring in Patient Rooms
2026
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Ambient AI in primary care: an exploratory mixed methods survey of UK general practitioners
Part of BMJ Health & Care Informatics, 2026
- DOI for Ambient AI in primary care: an exploratory mixed methods survey of UK general practitioners
- Download full text (pdf) of Ambient AI in primary care: an exploratory mixed methods survey of UK general practitioners
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Centralized or Department-Based Medical Equipment Ownership?
2026
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Part of Journal of Parkinson's Disease, 2026
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Part of JMIR Formative Research, 2026
- DOI for Comparing Stakeholders’ Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey
- Download full text (pdf) of Comparing Stakeholders’ Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey
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Coproduction Without Youth?: Closing the Participation Gap in Digital Mental Health Research
Part of JMIR Mental Health, 2026
- DOI for Coproduction Without Youth?: Closing the Participation Gap in Digital Mental Health Research
- Download full text (pdf) of Coproduction Without Youth?: Closing the Participation Gap in Digital Mental Health Research
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Part of Cancer Treatment and Research Communications, 2026
- DOI for Development and pilot feasibility of Kit-CAT, a serious-game-supported consultation for discussing complementary and alternative therapies in breast cancer care
- Download full text (pdf) of Development and pilot feasibility of Kit-CAT, a serious-game-supported consultation for discussing complementary and alternative therapies in breast cancer care
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Part of Journal of Community Genetics, 2026
- DOI for Diagnostic delay, care needs, and trust in healthcare among persons with rare disease and their next of kin living in Sweden
- Download full text (pdf) of Diagnostic delay, care needs, and trust in healthcare among persons with rare disease and their next of kin living in Sweden
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Digital Home Healthcare: A study of region Dalarna´s PilotProject on Remote Patient Monitoring
2026
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Part of Frontiers in Medicine, 2026
- DOI for Editorial: Pushing boundaries in EHR implementation and innovation through advanced digital health technologies
- Download full text (pdf) of Editorial: Pushing boundaries in EHR implementation and innovation through advanced digital health technologies
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Part of JMIR Mental Health, 2026
- DOI for Errors in AI-Transformed Patient-Centered Mental Health Documentation Written by Psychiatrists: Qualitative Pre-Post Study
- Download full text (pdf) of Errors in AI-Transformed Patient-Centered Mental Health Documentation Written by Psychiatrists: Qualitative Pre-Post Study
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Part of Studies in Health Technology and Informatics, p. 1865-1869, 2026
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Part of JMIR mhealth and uhealth, 2026
- DOI for Failed Implementation of Mobile Access to Electronic Health Records in Home Care: Qualitative Study in Sweden
- Download full text (pdf) of Failed Implementation of Mobile Access to Electronic Health Records in Home Care: Qualitative Study in Sweden
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Gender by Design: Visual Communication in Digital Health Platforms for Women’s Health
Part of International Conference on Human-Computer Interaction, p. 268-281, 2026
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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
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Part of PLOS ONE, 2026
- DOI for Has anything changed for Fibromyalgia?: Focus groups with patients on their lived experiences in England
- Download full text (pdf) of Has anything changed for Fibromyalgia?: Focus groups with patients on their lived experiences in England
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Part of JMIR Human Factors, 2026
- DOI for Health Care Professionals’ and Patients’ Perceptions and Experiences of Who Uses Video Consultations, and Why: Qualitative Study
- Download full text (pdf) of Health Care Professionals’ and Patients’ Perceptions and Experiences of Who Uses Video Consultations, and Why: Qualitative Study
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Part of Revue Neurologique, p. 280-289, 2026
- DOI for How clinicians explain a diagnosis of functional neurological disorder: A qualitative study with general practitioners, neurologists, psychologists and physiotherapists
- Download full text (pdf) of How clinicians explain a diagnosis of functional neurological disorder: A qualitative study with general practitioners, neurologists, psychologists and physiotherapists
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Part of JMIR Research Protocols, 2026
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Part of Frontiers in Health Services, 2026
- DOI for Making patient experience actionable: applying importance-performance analysis to guide improvements in Swedish healthcare
- Download full text (pdf) of Making patient experience actionable: applying importance-performance analysis to guide improvements in Swedish healthcare
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Part of Studies in Health Technology and Informatics, p. 675-679, 2026
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“More than a pretty face”: Graphic User Interface Rubric for Assessment of Digital Health Platforms
Part of Studies in Health Technology and Informatics, p. 1814-1815, 2026
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Multidisciplinary research priorities for artificial intelligence in mental health: a call to action
Part of Lancet psychiatry, p. 792-803, 2026
- DOI for Multidisciplinary research priorities for artificial intelligence in mental health: a call to action
- Download full text (pdf) of Multidisciplinary research priorities for artificial intelligence in mental health: a call to action
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Part of Studies in Health Technology and Informatics, 2026
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Part of Journal of Participatory Medicine, 2026
- DOI for Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey
- Download full text (pdf) of Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey
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Part of Studies in Health Technology and Informatics, p. 1710-1714, 2026
- DOI for Patient Rights to Correct Errors in the Electronic Health Record: Comparison of Legislation in Sweden, UK, and Germany
- Download full text (pdf) of Patient Rights to Correct Errors in the Electronic Health Record: Comparison of Legislation in Sweden, UK, and Germany
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Part of JMIR Human Factors, 2026
- DOI for Patients' and Health Care Professionals' Experiences of a Digital Self-Management System for Asthma: Qualitative Study
- Download full text (pdf) of Patients' and Health Care Professionals' Experiences of a Digital Self-Management System for Asthma: Qualitative Study
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Patients are disclosing sensitive information to AI tools: clinicians must adapt
Part of The BMJ, 2026
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Playing for Keeps: Long‐Term Recall With an Application Using Virtual Reality and the Method of Loci
Part of Scandinavian Journal of Psychology, 2026
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Part of BMC Health Services Research, 2026
- DOI for Primary and secondary patient participation - a qualitative study of healthcare professionals’ perceptions and experiences
- Download full text (pdf) of Primary and secondary patient participation - a qualitative study of healthcare professionals’ perceptions and experiences
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Part of Digital Health, 2026
- DOI for Psychiatrists' experiences and opinions of generative AI: An exploratory online mixed methods survey in Germany
- Download full text (pdf) of Psychiatrists' experiences and opinions of generative AI: An exploratory online mixed methods survey in Germany
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Quality in Use in Connected Mental Health: Protocol for a Systematic Mapping Study
Part of JMIR Research Protocols, 2026
- DOI for Quality in Use in Connected Mental Health: Protocol for a Systematic Mapping Study
- Download full text (pdf) of Quality in Use in Connected Mental Health: Protocol for a Systematic Mapping Study
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Part of Journal of Medical Ethics, p. 472-480, 2026
- DOI for Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’
- Download full text (pdf) of Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’
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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
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Part of Disability & Society, p. 281-287, 2026
- DOI for Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome
- Download full text (pdf) of Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome
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Part of Journal of Medical Internet Research, 2026
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Part of BMJ Open, 2026
- DOI for Use of ambient AI scribe in physicians' clinical documentation: a protocol for a systematic review on effectiveness, efficiency, and satisfaction.
- Download full text (pdf) of Use of ambient AI scribe in physicians' clinical documentation: a protocol for a systematic review on effectiveness, efficiency, and satisfaction.
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Part of Digital Health, p. 1-19, 2026
- DOI for What do patients consider sensitive health information?: A cross-sectional survey of national patient portal users
- Download full text (pdf) of What do patients consider sensitive health information?: A cross-sectional survey of national patient portal users
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Will AI do more harm than good to the UK's mental health?
Part of BMJ British Medical Journal, 2026
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A growing concern: Online access to minors’ health records
2025
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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
- Download full text (pdf) of 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
- Download full text (pdf) of 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
- DOI for Adult Proxy Online Record Access - Differences Across Four Countries
- Download full text (pdf) of Adult Proxy Online Record Access - Differences Across Four Countries
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Beyond counting clicks: rethinking engagement in digital mental health
Part of British Journal of Psychiatry, 2025
- DOI for Beyond counting clicks: rethinking engagement in digital mental health
- Download full text (pdf) of Beyond counting clicks: rethinking engagement in digital mental health
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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
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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
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Clinical competencies for using generative AI in patient care
Part of The BMJ, 2025


