Beteiligung Betroffener an der Forschung

Kirschning, Silke; Pimmer, V.; Matzat, Jürgen; Brüggemann, S.; Buschmann-Steinhage, Rolf

doi:10.1055/s-0032-1327728

Cited by 5 publications

(3 citation statements)

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“…This participatory research project was supported by the patient organization DCCV e. V. and by an eightmember patient advisory board for the entire duration of the project. Its involvement ranged from stage 1 (consultation) to 3 (collaboration) of the 4-stage model described by Sweeney & Morgan (14); for example, the patient advisory board was involved in the selection of the outcomes.…”

Section: Patient Advisory Boardmentioning

confidence: 99%

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The Effectiveness of Actively Induced Medical Rehabilitation in Chronic Inflammatory Bowel Disease

Hüppe¹,

Langbrandtner²,

Lill³

et al. 2020

Deutsches Ärzteblatt International

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edical rehabilitation (MR) is a "service for participation." In Germany, the DRV (Deutsche Rentenversicherung, German Pension Insurance) is its most important funding agency. The aim of MR is "to prevent impairment on the earning capacity of insured persons or early withdrawal from professional life or to integrate them in professional life as permanently as possible" (section 9 subsection 1 of Book VI of the German Social Code [SGB VI]).A further aim of MR is to avert, eliminate, mitigate or compensate for and prevent progression of impairing chronic diseases (section 42 subsection 1, SGB IX).Anyone wishing to participate in an MR program must submit an application themselves, which the attending physician accompanies with a form-based medical opinion. The DRV reviews whether certain medical and legal requirements are met. With an approval rate of 83%, the DRV funded about 832 936 inpatient MR services for adults in 2018 (1), including 3687 services for insured persons with chronic inflammatory bowel disease (IBD), such as Crohn's disease (CD) and ulcerative colitis (UC). The mean rehabilitation duration was 23 days. The services were usually provided in specialized facilities located far away from the usual place of residence of the patient (2).CD and UC belong to the group of disorders in which multiple areas are usually affected during periods of high disease activity (3). In addition to physical impairments, patients experience psychosocial problems, such as poor sex life, dietary restrictions, stress, or depression) (4). Such complex problems require an equally complex care approach. This is the strength of inpatient MR: It is provided by a multidisciplinary team, "all under one roof". Besides medical specialists, the MR team comprises nursing staff, psychologists, physiotherapists, sports therapists, and occupational therapists, as well as nutritionists, social workers, and vocational counsellors.The German system of inpatient MR is nearly unique; no other country has a directly comparable system in place (5). Thus, the increasing amount of SummaryBackground: The poor evidence base is a major problem for the German rehabilitation sector. This trial focused on testing the efficacy and benefit of inpatient medical rehabilitation compared to routine care in a single common entity, namely, chronic inflammatory bowel disease (IBD).Methods: This pragmatic, multicenter, randomized controlled trial with a parallel group design included gainfully employed patients with IBD who were covered by one of four statutory health insurance providers. Patients in the intervention group were actively advised regarding options for rehabilitation and given support in applying for it; patients in the control group continued with the care they had been receiving before participation in the trial. The primary endpoint was social participation, and there were various secondary endpoints, including disease activity and sick days taken off from work. All parameters were assessed by questionnaire at the beginning of the trial and twel...

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Section: Patient Advisory Boardmentioning

confidence: 99%

“…It allows-to the best of our knowledge for the first time for this indication-to compare inpatient MR with the continuation of ongoing standard care. Our approach was pragmatic (12,13) and-by involving a patient advisory board-also participatory (14).…”

mentioning

confidence: 99%

The Effectiveness of Actively Induced Medical Rehabilitation in Chronic Inflammatory Bowel Disease

Hüppe¹,

Langbrandtner²,

Lill³

et al. 2020

Deutsches Ärzteblatt International

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“…Die systematische Beteiligung an Forschungsprojekten wird jedoch bisher kaum umgesetzt [13,14]. Dies liegt zum einen an strukturellen Barrieren wie den Förderstrukturen, die voraussetzen, dass der zeitliche und finanzielle Aufwand eines Forschungsprojekts präzise eingeschätzt werden kann [15]. Die Beteiligung von Betroffenen erfordert eine höhere Flexibilität und zusätzliche finanzielle Ressourcen.…”

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Mitforschen, aber wie? Entwicklung und Evaluation eines Forschungstrainings für Psychiatrieerfahrene

et al. 2015

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Participation of mental health services users in research is increasingly acknowledged in Germany. Principles for successful involvement include research training for service users. The aims of the project were (1) to develop and (2) to evaluate a research training. The research training was developed in five participatory meetings and piloted with 28 participants. They answered questions on the research training and about their interest in research, research-related empowerment and research participation. Interest in research did not change. But there is a difference between research-related empowerment before (t1) and after (t2) the research training ( = - 2.237; = 0.025). The number of participants registered in scientific studies increased from 4 (t1) to 8 three months later (t3) whereas the number of participants reporting own research ideas decreased from 7 (t1) to 5 (t3). Although interest has not been affected, the evaluation shows significant effects on research-related empowerment in participants. Results concerning transfer are divergent. However, feedback was positive. We are planning to disseminate and refine the training.

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