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Publications (10 of 52) Show all publications
Luckhaus, J. L., Scott Duncan, T., Kharko, A., Clareborn, A., Hägglund, M., Blease, C. & Riggare, S. (2026). A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study. JMIR AI, 5, Article ID e74144.
Open this publication in new window or tab >>A Qualitative Exploration of Ethical Aspects of Using AI in Parkinson Disease: Patient Panel Study
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2026 (English)In: JMIR AI, E-ISSN 2817-1705, Vol. 5, article id e74144Article in journal (Refereed) Published
Abstract [en]

Background: As Parkinson disease (PD) rates increase, so does interest in finding new technological solutions for PD management. Despite substantial efforts to explore potential applications of artificial intelligence (AI) in PD management, research from the perspectives of people with PD on AI remains limited.

Objective: This study aims to explore the ethical considerations of AI in PD management from the perspective of people with PD.

Methods: A qualitative triangulation of 13 interviews and 2 focus groups (FGs) with a panel of expert-by-experience people with PD from 6 European countries was carried out using abductive thematic analysis. The 6 biomedical ethical principles conceptualized by Beauchamp and Childress guided the analysis. Participants varied in diagnosis, disease experiences, and technological backgrounds. A researcher with PD was involved from start to finish, providing valuable insights into data collection and analysis.

Results: Although optimistic that AI could enhance autonomy and beneficence through personalized, actionable insights for people with PD and their health care professionals, concerns arose over patient involvement, model accuracy and privacy, ethical injustices, and the psychological impact. Risk prediction, prognosis, and medication response were viewed differently in terms of potential value and ethical considerations, with risk prediction being perceived as the most ethically complex. To uphold autonomy, it was considered important for AI insights to be patient-accessible, and sensitive insights should be communicated by a health care professional who recognizes individual differences in desiring and responding to AI predictions.

Conclusions: While people with PD felt AI could personalize (self-)care and increase autonomy, concerns about psychological harm and widening inequalities highlight the importance of ethical safeguards. Our findings underscore the importance of AI integrations that prioritize individual needs, actively engage people with PD in the development, implementation, and interpretation of predictive AI, and establish guidelines to support health care professionals and minimize patient harm. Different forms of implementation and precautions should be taken for risk, progression, and medication response prediction.

Place, publisher, year, edition, pages
JMIR Publications, 2026
Keywords
artificial intelligence, AI, co-design, medical ethics, biomedical ethical principles, Parkinson disease, predictive medicine, precision medicine, user perceptions, qualitative study
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-585151 (URN)10.2196/74144 (DOI)001760395700001 ()42048575 (PubMedID)2-s2.0-105037504331 (Scopus ID)
Available from: 2026-05-02 Created: 2026-05-02 Last updated: 2026-05-25Bibliographically approved
Hägglund, M., Kharko, A., Riggare, S., Blease, C., Hagström, J. & Scott Duncan, T. (2026). Adoption and Use of Proxy Online Record Access in Sweden – A Retrospective Analysis. Studies in Health Technology and Informatics, 336, 1900-1904
Open this publication in new window or tab >>Adoption and Use of Proxy Online Record Access in Sweden – A Retrospective Analysis
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2026 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 336, p. 1900-1904Article in journal (Refereed) Published
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-586843 (URN)10.3233/shti260568 (DOI)
Available from: 2026-05-24 Created: 2026-05-24 Last updated: 2026-05-24
Luckhaus, J., Kharko, A., Scott Duncan, T., Riggare, S., Hägglund, M. & Blease, C. (2026). "ChatGPT knows my Parkinson's": Perspectives of people with Parkinson's disease on use of generative AI.. Journal of Parkinson's Disease, 1877718X261445949, Article ID 1877718X261445949.
Open this publication in new window or tab >>"ChatGPT knows my Parkinson's": Perspectives of people with Parkinson's disease on use of generative AI.
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2026 (English)In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, p. 1877718X261445949-, article id 1877718X261445949Article in journal (Refereed) Published
Abstract [en]

Patients' use of generative AI (GenAI) independently from healthcare is increasing across diseases. Little is known about its use among people with Parkinson's disease (PwP). This exploratory convenience-sample, mixed-methods online survey (n = 149, 19 countries) explored PwP's use of GenAI. Among our respondents, 65% had used GenAI, of which 40% had used it for disease-specific inquiries. Qualitative analysis identified informational, interpretive, and preparational uses of GenAI. As PwP increasingly bring AI-assisted data to consultations, clinicians must now actively engage in discussions about these tools, to support shared decision-making, safety and transparency.

Keywords
generative AI, mixed-methods, patient perspectives, self-management
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-584868 (URN)10.1177/1877718X261445949 (DOI)42029656 (PubMedID)
Available from: 2026-04-26 Created: 2026-04-26 Last updated: 2026-04-26
Luckhaus, J., Kharko, A., Blease, C., Almarcha-Menargues, M.-L., Del Campo, N., Balula Dias, S., . . . Scott Duncan, T. (2026). Comparing Stakeholders’ Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey. JMIR Formative Research, 10, e90377-e90377
Open this publication in new window or tab >>Comparing Stakeholders’ Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey
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2026 (English)In: JMIR Formative Research, E-ISSN 2561-326X, Vol. 10, p. e90377-e90377Article in journal (Refereed) Published
Abstract [en]

Background: Parkinson disease (PD) is a progressive neurodegenerative disorder that poses complex challenges for persons with PD, informal caregivers, and health care professionals. With growing interest in digital and predictive artificial intelligence (AI) tools for disease management, understanding the needs and digital readiness of these stakeholder groups is crucial. Objective: This work aims to (1) identify digital practices for PD management among persons with PD, at-risk individuals, caregivers, and health care professionals; (2) compare these practices across groups; (3) explore stakeholder desires for AI-based tools; and (4) assess alignments and gaps to inform tailored AI solutions. Methods: An anonymous cross-sectional online survey of an exploratory nature was distributed (from December 2024 to October 2025) in 5 languages and completed by 255 respondents. Descriptive statistics summarized responses to 41 questions, including stakeholder-specific items. χ2 tests were performed to examine stakeholder differences in desired AI features. Results: Interest in predictive AI was high across stakeholder groups. Symptom tracking was the most desired feature (selected by more than 76% of the respondents), and personalized treatment recommendations came second for both persons with PD and health care professionals; however, stakeholder priorities diverged in other areas. Health care professionals rated improving patient and informal caregiver engagement as significantly more important than persons with PD did, χ21 (n=205)=34.78, P<.001, and Cramer V=0.41. Despite considerable interest, the reported use of digital tools was limited, as most persons with PD did not use symptom-tracking apps or wearables, nor were they currently monitoring their condition, although many expressed intentions to begin. Conclusions: While predictive AI tools were viewed positively across groups, there were significant gaps in stakeholder preferences, highlighting the importance of tailored, context-aware design. Early diagnosis was not prioritized by persons with PD or health care professionals, likely reflecting the complexity of diagnosing PD in the absence of disease-modifying therapies. Coupled with the emphasis placed on preventive lifestyle guidance by persons with PD and those at risk, this highlights the importance of actionability in AI-based monitoring and prediction. Such actionability may also enhance perceived relevance and uptake, given that reported interest in digital health tools and self-tracking exceeded actual use. These findings offer early-stage insight to guide the development of future AI-based solutions for PD.

Place, publisher, year, edition, pages
JMIR Publications, 2026
Keywords
artificial intelligence, AI, Parkinson disease, stakeholder perspectives, patient perspectives, self-care, predictive AI
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-586770 (URN)10.2196/90377 (DOI)001814024400008 ()42160536 (PubMedID)2-s2.0-105042442512 (Scopus ID)
Available from: 2026-05-22 Created: 2026-05-22 Last updated: 2026-07-17Bibliographically approved
Menekseoglu, P. O., Weibezahl, M., Ellingsen, M., Sterkenburg, J., Kharko, A., Hochwarter, S. & Schwarz, J. (2026). Errors in AI-Transformed Patient-Centered Mental Health Documentation Written by Psychiatrists: Qualitative Pre-Post Study. JMIR Mental Health, 13, Article ID e78351.
Open this publication in new window or tab >>Errors in AI-Transformed Patient-Centered Mental Health Documentation Written by Psychiatrists: Qualitative Pre-Post Study
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2026 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 13, article id e78351Article in journal (Refereed) Published
Abstract [en]

Background: Patients' digital access to their personal health data is becoming increasingly common worldwide. However, medical documentation often contains technical language and sensitive information, which can lead to potential misunderstandings and distress among patients. These issues may be particularly impactful in mental health contexts. Large language models (LLMs) offer a promising approach by transforming clinician-generated health notes into language that is more patient-centered, nonmedicalized, and empathetic. However, risks related to accuracy and clinical safety have not been adequately investigated in psychiatry.

Objective: This study aimed to qualitatively analyze the errors introduced by LLMs when transforming notes written by psychiatrists into patient-facing formats. It also highlights the implications for clinical communication and patient safety.

Methods: Clinical notes (n=63) written by 19 psychiatrists in an outpatient treatment setting were collected, anonymized, and translated from German to English by humans. OpenAI GPT-3.5 Turbo was used to develop a preprompt that transformed these notes into a patient-centered, lay-readable form through an iterative process. Three psychiatrists qualitatively analyzed the LLM-revised documentation using Kuckartz content analysis. They compared the preconversion and postconversion notes to systematically identify and categorize LLM-induced errors.

Results: Five categories of clinically relevant errors were identified: (1) clinical misinterpretations, particularly in critical assessments such as suicidality, where nuanced terminology was oversimplified or inaccurately represented; (2) attribution errors, where behaviors or roles within family dynamics or interactions were incorrectly attributed to different individuals; (3) content distortion errors, which were characterized by speculative additions, emotional exaggerations, and inappropriate contextual assumptions; (4) abbreviation and terminology errors, which resulted from inaccurate expansions of medical abbreviations and terms; and (5) structural and syntax errors, which resulted in ambiguity, particularly when the original notes were brief or bulleted. Despite significant improvements in the readability and overall linguistic fluency of the converted notes, these errors occurred.

Conclusions: LLMs have the potential to transform psychiatric notes into patient-friendly formats. However, critical errors remain prevalent and can impair clinical judgment, understanding of patient circumstances, clarity of medication regimens, and interpretation of clinical observations. To safely integrate artificial intelligence-generated documentation into psychiatric care, clinician oversight and targeted model refinement are essential. Future research should explore strategies to mitigate these errors, assess their comprehensive clinical impact, and incorporate patient and provider perspectives to ensure robust implementation.

Place, publisher, year, edition, pages
JMIR Publications, 2026
Keywords
open notes, large language models, psychiatric documentation, patient-centered communication, artificial intelligence, clinical safety
National Category
Psychiatry Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:uu:diva-586640 (URN)10.2196/78351 (DOI)001759365000001 ()42054574 (PubMedID)
Available from: 2026-05-21 Created: 2026-05-21 Last updated: 2026-05-21Bibliographically approved
Hagström, J., Hägglund, M., Blease, C. & Kharko, A. (2026). Errors That Matter: Negative Experiences of Incorrect and Incomplete Health Records Among Youth in Mental Healthcare. Studies in Health Technology and Informatics, 336, 1865-1869
Open this publication in new window or tab >>Errors That Matter: Negative Experiences of Incorrect and Incomplete Health Records Among Youth in Mental Healthcare
2026 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 336, p. 1865-1869Article in journal (Refereed) Published
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-586847 (URN)10.3233/shti260561 (DOI)
Available from: 2026-05-24 Created: 2026-05-24 Last updated: 2026-05-24
Terceiro, L., Hägglund, M. & Kharko, A. (2026). Gender by Design: Visual Communication in Digital Health Platforms for Women’s Health. International Conference on Human-Computer Interaction, 268-281
Open this publication in new window or tab >>Gender by Design: Visual Communication in Digital Health Platforms for Women’s Health
2026 (English)In: International Conference on Human-Computer Interaction, p. 268-281Article in journal (Refereed) Published
Abstract [en]

Digital Health Platforms (DHPs) have expanded rapidly, offering new possibilities for healthcare access, monitoring, education, and treatment across diverse contexts. Despite their potential, DHPs risk reinforcing existing health inequities due to unequal access to technology, limited digital or health literacy, and poor consideration of users’ social contexts. Several health frameworks, including the World Health Organisation, emphasise that digital health (DH) must be ethical, safe, inclusive, and aligned with the social determinants of health. Within this landscape, women’s healthcare remains markedly under-researched, receiving a disproportionately small share of DH investment, contributing to persistent gaps in care quality and raising concerns about bias in women-focused DHPs. This study examined how graphic user interface design in women-focused DHPs functions as a mechanism of mediation and control, reinforcing norms and stereotypes and shaping subjectivities. The study adopts an abductive approach, applying critical discourse analysis and feminist and queer theories to a corpus of women-focused DHPs identified through a survey of peer-reviewed research databases. The study analyses how dominant aesthetics, often characterised by pink colours, infantilised illustrations, and care-oriented imagery, reinforce normative femininity, gender stereotypes, and power hierarchies. By integrating critical discourse analysis and feminist and queer theoretical lenses, the study examines how visual interfaces reveal intersectional gaps in representation and proposes alternative approaches that expand inclusivity and diversity within DH.

Place, publisher, year, edition, pages
Springer Nature Switzerland, 2026
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-594336 (URN)
Available from: 2026-07-16 Created: 2026-07-16 Last updated: 2026-07-16
Locher, C., Kharko, A., Lanario, J. W., Druart, L., Hansford, K., Koechlin, H. & Davies, A. (2026). Has anything changed for Fibromyalgia?: Focus groups with patients on their lived experiences in England. PLOS ONE, 21(2), Article ID e0342065.
Open this publication in new window or tab >>Has anything changed for Fibromyalgia?: Focus groups with patients on their lived experiences in England
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2026 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 21, no 2, article id e0342065Article in journal (Refereed) Published
Abstract [en]

Background: While awareness of Fibromyalgia (FM) has evolved across healthcare and social settings, individuals with FM continue reporting poor understanding of their condition in the everyday.Objective To explore the lived experiences and subjective illness narratives of individuals with FM, focusing on personal understandings of FM, outlook on healthcare, and perceived attitudes of surrounding peers.

Methods: We carried out four online focus groups with individuals diagnosed with FM. Participants were recruited from a pool of patients in a pain management centre in the Southwest of England, UK, that previously took part in a FM management course, 'Body Reprogramming Course' (BRC). Discussion topics included the personal understanding of FM (illness identity, timeline, causes, consequences, and controllability), history with FM diagnosis and treatment, attitudes of family and friends towards FM, as well as personal attitude towards medication. Audio recordings from focus groups were transcribed and analysed by two primary coders, using a reflexive thematic analysis approach. Codes were iteratively discussed and refined with two additional coders.

Results: 20 individuals with FM took part in four focus groups, aged between 25 and 67 years. Analysis of the data revealed 5 overarching themes and 10-subthemes related to lived experiences of FM: 1) The individual journey; 2) FM in healthcare; 3) FM in social context; 4) FM in personal context; 5) Experiences with BRC. Although participants felt that there has been some positive societal shift towards FM, most discussions concerned personal struggles with conveying to family and healthcare professionals the impact of the condition. Participants described a significant emotional toll of dealing with hidden struggles. Many expressed disappointment with prior care, describing it as fragmented, and some expressed strong opposition to medication-based treatments. Reflecting on the BRC, participants liked the coping strategies and the developed connections.

Conclusions: While participants recognised some positive changes in others' understanding of FM, the overwhelming sentiment was that FM remains overall poorly received and supported by peers and healthcare professionals. Participants in the BRC described their experience of FM as part of a journey toward a higher purpose, linking their illness to personal growth.

Place, publisher, year, edition, pages
Public Library of Science (PLoS), 2026
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-581743 (URN)10.1371/journal.pone.0342065 (DOI)001691382700021 ()41686878 (PubMedID)2-s2.0-105030042539 (Scopus ID)
Available from: 2026-03-13 Created: 2026-03-13 Last updated: 2026-03-13Bibliographically approved
Garcia Sanchez, C., Kharko, A., Hägglund, M., Riggare, S. & Blease, C. (2026). Mapping Existing Evidence on Physicians’ and Patients’ Experiences with GenAI in Clinical Communication and Documentation: A Rapid Review. Studies in Health Technology and Informatics, 336, 675-679
Open this publication in new window or tab >>Mapping Existing Evidence on Physicians’ and Patients’ Experiences with GenAI in Clinical Communication and Documentation: A Rapid Review
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2026 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 336, p. 675-679Article in journal (Refereed) Published
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-586844 (URN)10.3233/shti260256 (DOI)
Available from: 2026-05-24 Created: 2026-05-24 Last updated: 2026-05-24
Terceiro, L., Hägglund, M. & Kharko, A. (2026). “More than a pretty face”: Graphic User Interface Rubric for Assessment of Digital Health Platforms. Studies in Health Technology and Informatics, 336, 1814-1815
Open this publication in new window or tab >>“More than a pretty face”: Graphic User Interface Rubric for Assessment of Digital Health Platforms
2026 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 336, p. 1814-1815Article in journal (Refereed) Published
National Category
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-586846 (URN)10.3233/shti260546 (DOI)
Available from: 2026-05-24 Created: 2026-05-24 Last updated: 2026-05-24
Projects
Documentation Error in the Patient Accessible Electronic Health Record (DE-PAEHR) - utilizing patient agency to close the feedback loop on care [2022-01020_VR]; Uppsala University; Publications
Kharko, A., Hägglund, M., Angelova, D., Scott Duncan, T., Hagström, J., Hansford, K., . . . Blease, C. (2025). Prevalence and types of errors in the electronic health record: protocol for a mixed systematic review. BMJ Open, 15(6)
AI in Healthcare Unleashed: Responsible and Ethical Implementation of Large Language Model Chatbots in Clinical Workflows and Patient Care [2024-00039_Forte]; Uppsala University; Publications
Blease, C., Hagström, J., Garcia Sanchez, C., Kharko, A., McMillan,  ., Gaab,  ., . . . Mandl,  . D. (2025). General practitioners’ adoption of generative artificial intelligence in clinical practice in the UK: An updated online survey. Paper presented at 2025/11/25. Digital Health, 11Garcia Sanchez, C., Kharko, A., Hägglund, M., Riggare, S. & Blease, C. (2025). Health Care Professionals' Experiences and Opinions About Generative AI and Ambient Scribes in Clinical Documentation: Protocol for a Scoping Review. JMIR Research Protocols, 14, Article ID e73602.
My Electronic Health Record is wrong, now what? The impact of EHRrors on patients and healthcare professionals [2024-01288_Forte]; Uppsala University; Publications
Kharko, A., Hägglund, M., Angelova, D., Scott Duncan, T., Hagström, J., Hansford, K., . . . Blease, C. (2025). Prevalence and types of errors in the electronic health record: protocol for a mixed systematic review. BMJ Open, 15(6)
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/ 0000-0003-0908-6173

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