Background: Living with psoriasis or psoriasis arthritis requires balancing medications and lifestyle changes [1]. This balance requires knowledge and support [2]. As patients’ access to their own electronic health records has successively been implemented in the Swedish healthcare system, this requires new skills but also provides new opportunities for patient–caregiver communication [3].

Objectives: This study aimed to explore how patients with psoriasis or psoriasis arthritis access and use their electronic health records.

Methods: Adults (≥18 years) with psoriasis or psoriatic arthritis were recruited from tertiary specialist care between January 2022 and October 2023. The participants received written information about the study and oral information before the interviews. The Regional Ethical Review Board approved the study. Individual interviews were conducted by telephone and recorded, following a semi-structured interview guide with probes. Following transcription, qualitative content analysis was conducted [4].

Results: Sixteen people participated, equally distributed between men and women (mean age 53.6, range 27–74 years). The participants’ current healthcare contacts varied from once a year to weekly. The interview durations were 7–107 (mean 31) minutes, depending on the participant’s experience. The respondent with the shortest interview had not read the main text of their medical record but had checked laboratory test results and medical consultation booking times. Their reasons for not reading their medical record’s main text were described as having no need and great confidence in the physician’s competence. The content analysis revealed three themes: Empowerment and control , Collaboration and trust and Accessibility and usability. Considering Empowerment and control , the participants described obtaining insights to better understand their health when reading their medical record. Having control also gave them a sense of feeling calm due to being able to check for potential errors or misunderstandings. One prominent reason to read medical records was to be able to inform and update significant others about decisions and plans after medical consultations. The ability to control laboratory test results also helped the participants avoid unnecessary contacts with the healthcare system that they previously would have made from curiosity or medical need. In contrast, some study participants expressed that they probably would not understand the text, and therefore chose not to engage with the content and consequently only partially used the digital solutions. Regarding Collaboration and trust , the participants described how they could prepare for scheduled healthcare visits by updating themselves on the latest laboratory results, as well as discussions, decisions and plans made in previous healthcare visits. The participants also mentioned collaborations whereby they were encouraged by their physicians to read their medical records and laboratory results, leading to feeling that they were more engaged in the consultations with prepared and adequate questions. However, distrust was described when reading information that they felt unnecessary or offensive, and when they could not find information, they expected the physicians to write in the medical record. Insights into the medical record’s content also helped the participants when their regular doctor was replaced: instead of having to repeat answers to unnecessary questions or previous examinations, they could refer to the medical record with trust when they knew that the reply or results already existed. However, some study participants also expressed that they felt no need to read the medical records as they trusted their physician. The Accessibility and usability theme included experiences of technical solutions, access, suggestions for improvement and privacy and security concerns about accessing medical records online. The respondents generally found the digital solution usable, except for digital updates which were frustrating when leading to a need to re-navigate the system. Privacy concerns were described as minor in relation to the benefits. Further, having access to their own medical record was described as a natural privilege, but also as potentially unsuitable for some individuals due to personal reasons and level of knowledge. To develop the content’s usability and facilitate understanding of clinical information, links to dictionaries or information sites to enhance general and specific knowledge were suggested.

Conclusion: This study revealed how patients with psoriasis or psoriatic arthritis perceive the benefits of accessing their own medical records. For patients wishing to be more engaged in their medical consultations, this access can be a tool to be used both before and after, as well as between health care appointments. However, more knowledge is needed on how to educate both patients and healthcare personnel on how an electronic solution, such as patients’ access to their medical records, can enhance communication between the two.

REFERENCES: [1] Simmons, A. and R. Fleischmann, Living with Psoriatic Arthritis: A Patient’s and Physician’s Perspective. Rheumatol Ther, 2016. 3 (1): p. 1-4.

[2] Jankowiak, B., et al., The need for health education among patients with psoriasis. Dermatol Nurs, 2004. 16 (5): p. 439-44.

[3] Konttila, J., et al., Healthcare professionals’ competence in digitalisation: A systematic review. J Clin Nurs, 2019. 28 (5-6): p. 745-761.

[4] Hsieh, H.F. and S.E. Shannon, Three approaches to qualitative content analysis. Qual Health Res, 2005. 15 (9): p. 1277-88.

Acknowledgements: A special thanks to the collegues Emma Sandström, Mariam Ateai and Louise Lundén that have contributed in the recrutement and interviews of the participants. We would also like to acknowledge the contributions of the late Dr. Isabella Scandurra, whose impact on this work continues to resonate.

Disclosure of Interests: Susanne Pettersson AstraZeneca 2024, Last five years: Novartis 2022, CSL ViFor 2024, Pfizer 2024 Grant used to highlighten patients perspective. None of these grant are related to the submitted abstract, Anna Karin Rickardsdotter Olofsson: None declared, Maria Hägglund: None declared.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.