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Background: In Germany, approximately 17 million people are living with RMDs. After a long process, key changes in digital infrastructure either in single solutions like electronic health record (EHR), e-prescription, digital apps on prescription or video-consultation are established and progressively connected to a digital ecosystem. In 2025 the EHR will be established as an opt out model on national level, as part of Germany’s Digitalisation Strategy for Health and Care. This introduction is accompanied by great hopes and expectations on the part of patient organisations and patients, but also by many critical voices and fears.
Objectives: Show positive and critical expectations of patients living with RMDs towards digitalisation in healthcare.
Methods: Main results of the recent anonymous online survey “Give RMDs a voice” will be presented. In the light of this data, current progresses in digitalisation of healthcare will be discussed, using examples as EHR, e-prescription. The data were analyzed with SPSS by descriptive and multivariate statistical methods. Digitalisation in healthcare was addressed with 8 questions as an important topic among an overall of 41 questions. Other topics addressed were i.e. waiting times for appointments, access towards and quality of supply with medical aids, (digital)work and RMDs.
Results: The survey “Give RMDs a voice” of the German Rheumatism League was conducted between November and December 2024 including 845 participants with RMDs across Germany. 44,6% give one rheumatic diagnosis, 53,4% two or more. The most frequent diagnoses are RA (53,5%), OA (31,5%), fibromyalgia (21,1%). 20,2% were diagnosed with RMDs within the last 3 years, 12,0% 4-5 years ago, 23,1% 6-10 years ago and 44,7% more than 10 years ago. Most of the participants (89,2%) were female. The age distribution shows a focus in the late middle and early advanced age, but also participants in other stages of life: 5,4% are up to 29 years old, 9,6% 30-39, 15,2% 40-49, 31,0% 50-59, 28,0% 60-69 and 10,8% ≥ 70 years. Full working (27,5%) and part working (23,4%) persons are about one half of the survey population, 23,2% are retired and 15,9% in full disability pension. 63,0% are members of the German Rheumatism League. Personal contact with the physician is considered important with an average of 2.27 on a ten point numerical rating scale from 1 (very important) to 10 (not important). E-prescription (for one year mandatory at the time of the survey) is seen in an open question both positive (502 answers) and negative (289 answers). Positive aspects are i.e. saving on visits and journeys to the doctor, time saving and efficiency, facilitation of recurring prescriptions, increase of availability/accessibility and. environmental friendliness. Negative aspects are i.e. time delays in activation of the prescription, technical problems and malfunctions, limited control and transparency for the patients. Video consultation (legal part of care since 2017) was used by 8,8%, 28,6% intend to use and 18,3% exclude a use. Apps on prescription by doctor or insurance (legal part of care since 2020), are used by 10,9%, 24,4% intend to use and 12,8% exclude a use. With respect towards the EHR, positive attitude (24,5% very positive, rather positive 24,6%) outweighs neutral (12,9%) or negative (5,2% rather negative, 5,1% very negative) voices. However, there is a relatively large group of 21,7%, who can not yet decide. In open questions, asking which opportunities/benefits or disadvantages/risks are associated with the EHR in daily health care context, positive opinions (473) like availability of all health data in one place or avoidance of duplicate examinations, slightly outweigh negative opinions (375), which are seen by 44,4% of the participants. Answer dimensions were i.e. data protection problems, cyber attacks and data misuse, technical problems and dependence on IT systems, lack of control over access rights, incorrect or incomplete entries, reduced impartiality in diagnoses, restriction of privacy, lack of transparency for patients, reduction of the doctor-patient dialogue, discrimination and stigmatisation. A substantial need of support from the German Rheumatism League is addressed in terms of information on the EHR which is independent of the health insurance companies (e.g. on registration, data protection, utilisation options) by the participants: 64,5% want print media in different formats, 52,4% online Information, which underlines the digital divide and the need of hybrid information formats.
Conclusion: On the threshold of a new level of digitalization of healthcare in Germany, the online survey “Give RMDs a Voice” shows insights in attitudes, (perspectives of) use and needs in digital health solutions by patients living with RMDs. E.g., the e-prescription shows benefit for the patients, but also many technical, structural, access and information barriers, which have to be improved. There is, one month before market access, a huge lack of (independent) information towards the EHR, and the EHR is seen yet positively by just one out of two patients. The results stress the importance of user-education as a multiprofessional and sectorcrossing task, and the necessity to stronger involve Patient Organisations. The increased involvement of POs is needed also in the development and regulation of digital devices and the digital health ecosystem: to implement patient orientated, usable and trustworthy solutions, that help patients with RMDs and their carers to better manage and treat their condition and promote progress in research. Further detailed analyses of this survey will segmentize the “users” and specify their needs, as well as the relevant group of non users/excluded persons and to be reflected in context of better access solutions and hybrid alternatives.
REFERENCES: NIL.
Acknowledgements: Sabine Eis, Deutsche Rheuma-Liga Bundesverband e.V.
Disclosure of Interests: 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 (