Advertisement

Partizipative Forschung in der Deutschen Rheuma-Liga — Inhaltliche und praktische Umsetzung der partizipativen Forschung in einer Patientenorganisation

Published:August 01, 2020DOI:https://doi.org/10.1016/j.zefq.2020.04.004

      Zusammenfassung

      Die Deutsche Rheuma-Liga ist mit rund 300.000 Mitgliedern die größte deutsche Selbsthilfeorganisation im Gesundheitsbereich. Die Deutsche Rheuma-Liga fördert einerseits selbst Forschungsprojekte und bringt sich andererseits – im Sinne der partizipativen Forschung – auch aktiv mit geschulten Patientenvertretern (sog. „Forschungspartnern“) in die Entwicklung und Gestaltung von wissenschaftlichen Forschungsvorhaben ein, die von anderen Institutionen gefördert werden. Um die partizipative Forschung in Deutschland im Feld der Rheumatologie zu etablieren, wurden verschiedene Maßnahmen unternommen: Die partizipative Forschung wurde als obligat in die Förderrichtlinien der Deutschen Rheuma-Liga aufgenommen. Es wurde ein Trainingskurs für Betroffene entwickelt. Erläuternde Broschüren zur partizipativen Forschung und Informationskarten wurden erstellt. In einer Briefaktion wurden rund 70 Universitätskliniken und Akutkrankenhäuser mit rheumatologischen Abteilungen angeschrieben und über die Vorteile der partizipativen Forschung informiert. Seit 2014 wurden drei Trainingskurse mit 21 Teilnehmern durchgeführt, die bis Ende 2019 in mehr als 30 Forschungsprojekte eingebunden waren. Die bisherigen Erfahrungen sind überwiegend positiv. Die Umsetzung der partizipativen Forschung in der Deutschen Rheuma-Liga kann als erfolgreich bezeichnet werden. Der Artikel fasst den Aufbau der Strukturen zur Umsetzung der partizipativen Forschung in der Deutschen Rheuma-Liga und die Erfahrungen aus fünf Jahren partizipativer Forschung zusammen.

      Abstract

      The German Rheumatism League (“Deutsche Rheuma-Liga”) is the largest patient organisation in Germany, with about 300,000 members. In the sense of participatory research, the Deutsche Rheuma-Liga involves trained patient representatives in research projects funded by either the Deutsche Rheuma-Liga or other organisations.
      In order to invigorate the principle of participatory research in the field of rheumatology in Germany various measures have been undertaken: the principle of participatory research has been implemented as obligatory in the funding guidelines of the German Rheumatism League. A training course for German-speaking patients was created, and reference cards and an explanatory brochure were provided. In a letter campaign, about 70 universities and hospitals with rheumatology departments were contacted and informed about the benefits of participatory research.
      Since 2014, three training courses with 21 participants have been conducted. The trained patient representatives have participated in more than 30 projects up to the end of 2019. The overall experience of the patient representatives actively involved in research projects was mainly positive, and participatory research was perceived as being interesting and enriching. The implementation of participatory research in the German Rheumatism League can be described as successful.
      The article describes the measures taken to implement the principle of participatory research into the structures of the German Rheumatism League and summarises the experiences of patients and the patient organisation during five years of active participation in research projects.

      Schlüsselwörter

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Literatur

        • Gromnica-Ihle E.
        • Faubel U.
        Partizipation der Patienten an der Gesundheitsversorgung, arthritis+rheuma. 2015; 35: 139-144
        • de Wit M.
        • Teunissen T.
        • Houtum L.
        • van M.
        • Weide
        Development of a standard form for assessing research grant applications from the perspective of patients.
        Res Involv.Engagem. 2018; 4: 27
        • van der Heijde D.
        • Aletaha D.
        • Carmona L.
        • Edwards C.J.
        • Kvien T.K.
        • Kouloumas M.
        • Machado P.
        • Oliver S.
        • Wit M.
        • de M.
        • Dougados
        2014 Update of the EULAR standardised operating procedures for EULAR-endorsed recommendations.
        Ann.Rheum.Dis. 2015; 74: 8-13
        • de Wit M.
        • Cooper C.
        • Tugwell P.
        • Bere N.
        • Kirwan J.
        • Conaghan P.G.
        • Roberts C.
        • Aujoulat I.
        • Al-Daghri N.
        • de Carvalho Araujo I.
        • Barker M.
        • Bedlington N.
        • Brandi M.L.
        • Bruyere O.
        • Burlet N.
        • Halbout P.
        • Hiligsmann M.
        • Jiwa F.
        • Kanis J.A.
        • Laslop A.
        • Lawrence W.
        • Pinto D.
        • Yerro C.
        • Prieto V.
        • Rabenda R.
        • Rizzoli M.
        • Scholte-Voshaar M.
        • Vlaskovska J.Y.
        • Reginster
        Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis.
        Osteoarthritis and Musculoskeletal Diseases (ESCEO), Aging Clin.Exp.Res. 2019; 31: 905-915
        • Clausen J.
        Involvement of a patient organisation in health technology assessment.
        Annals of the Rheumatic Diseases. 2018; 77: 28-29
        • Schipper K.
        • Abma T.A.
        • van Zadelhoff E.
        • van de Griendt J.
        • Nierse C.
        • Widdershoven G.A.M.
        What does it mean to be a patient research partner?.
        An Ethnodrama, Qualitative Inquiry. 2010; 16: 501-510
        • Kjeken I.
        • Ziegler C.
        • Skrolsvik J.
        • Bagge J.
        • Smedslund G.
        • Tovik A.
        • Dagfinrud H.S.
        • Petersson I.F.
        • Hagen K.B.
        How to develop patient-centered research: some perspectives based on surveys among people with rheumatic diseases in Scandinavia.
        Physical Therapy. 2010; 90: 450-460
        • de Wit M.
        • Adebajo A.
        Unique role of rheumatology in establishing collaborative relationships in research. Past, present and future of patient engagement.
        Ann.Rheum.Dis. 2019; 78: 293-296
        • Cheung P.P.
        • Wit M.
        • de C.O.
        • Bingham III, J.R.
        • Kirwan A.
        • Leong L.M.
        • March P.
        • Montie M.
        • Scholte-Voshaar L.
        • Gossec
        Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.
        J Rheumatol. 2016; 43: 187-193
        • de Wit M.
        • Abma T.
        • Loon M.
        • Koelewijn-van S.
        • Collins J.
        • Kirwan
        Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences.
        BMJ Open. 2013; 3: e002241
        • de Wit M.P.
        • Abma T.A.
        • Koelewijn-van Loon M.S.
        • Collins S.
        • Kirwan J.
        What has been the effect on trial outcome assessments of a decade of patient participation in OMERACT?.
        J Rheumatol. 2014; 41: 177-184
        • Kirwan J.
        • Heiberg T.
        • Hewlett S.
        • Hughes R.
        • Kvien T.
        • Ahlmen M.
        • Boers M.
        • Minnock P.
        • Saag K.
        • Shea B.
        • Almazor M.
        • Suarez E.
        • Taal
        Outcomes from the Patient Perspective Workshop at OMERACT 6.
        J Rheumatol. 2003; 30: 868-872
        • Leong A.L.
        • Euller-Ziegler L.
        Patient advocacy and arthritis: moving forward.
        Bull.World Health Organ. 2004; 82: 115-120
        • Lorig K.
        • Lubeck D.
        • Kraines R.G.
        • Seleznick M.
        • Holman H.R.
        Outcomes of self-help education for patients with arthritis.
        Arthritis Rheum. 1985; 28: 680-685
        • Lorig K.
        • Ritter P.L.
        • Plant K.
        A disease-specific self-help program compared with a generalized chronic disease self-help program for arthritis patients.
        Arthritis Rheum. 2005; 53: 950-957
        • Fiehn C.
        • Holle J.
        • Iking-Konert C.
        • Leipe J.
        • Weseloh C.
        • Frerix M.
        • Alten R.
        • Behrens F.
        • Baerwald C.
        • Braun J.
        • Burkhardt H.
        • Burmester G.
        • Detert J.
        • Gaubitz M.
        • Gause A.
        • Gromnica-Ihle E.
        • Kellner H.
        • Krause A.
        • Kuipers J.
        • Lorenz H.M.
        • Muller-Ladner U.
        • Nothacker M.
        • Nusslein H.
        • Rubbert-Roth A.
        • Schneider M.
        • Schulze-Koops H.
        • Seitz S.
        • Sitter H.
        • Specker C.
        • Tony H.P.
        • Wassenberg S.
        • Wollenhaupt J.
        • Kruger K.
        [S2e guideline: treatment of rheumatoid arthritis with disease-modifying drugs].
        Z Rheumatol. 2018; 77: 35-53
        • Cattelaens K.
        Patient Partners - eine Erfolgsstory der Deutschen Rheuma-Liga.
        Aktuelle Rheumatologie. 2013; 38: 363-365
        • Schiltenwolf M.
        • Eidmann U.
        • Köllner V.
        • Kühn T.
        • Offenbächer M.
        • Petzke F.
        • Sarholz M.
        • Weigl M.
        • Wolf B.
        • Häuser W.
        Multimodale Therapie des Fibromyalgiesyndroms Aktualisierte Leitlinie 2017 und Übersicht von systematischen Übersichtsarbeiten.
        Der Schmerz. 2017; 31: 285-288
        • Wright M.T.
        • von Unger H.
        • Block M.
        Partizipation der Zielgruppe in der Gesundheitsförderung und Prävention, in: M.T. Wright [Ed.], Partizipative Qualitätsentwicklung in der Gesundheitsförderung und Prävention.
        Huber, Bern. 2010; : 35-52
        • Wiek D.
        • Böhm P.
        • Clausen J.
        Patientenbeteiligung an Forschungsprojekten: Die Forschungspartner der Deutschen Rheuma-Liga.
        Zeitschrift für Rheumatologie. 2016; 75: 236
        • de Wit M.P.
        • Berlo S.E.
        • Aanerud G.J.
        • Aletaha D.
        • Bijlsma J.W.
        • Croucher L.
        • Da Silva J.A.
        • Glusing B.
        • Gossec L.
        • Hewlett S.
        • Jongkees M.
        • Magnusson D.
        • Scholte-Voshaar M.
        • Richards P.
        • Ziegler C.
        • Abma T.A.
        European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects.
        Ann.Rheum.Dis. 2011; 70: 722-726
        • Lebwohl M.G.
        • Bachelez H.
        • Barker J.
        • Girolomoni G.
        • Kavanaugh A.
        • Langley R.G.
        • Paul C.F.
        • Puig L.
        • Reich K.
        • van de Kerkhof P.C.
        Patient perspectives in the management of psoriasis: results from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis Survey.
        J Am Acad.Dermatol. 2014; 70: 871-881
        • Gergianaki I.
        • Bertsias G.
        Systemic Lupus Erythematosus in Primary Care: An Update and Practical Messages for the General Practitioner.
        Front Med (Lausanne). 2018; 5: 161
        • Sreih A.G.
        • Shaw D.
        • Young K.
        • Burroughs C.
        • Kullman J.
        • Machireddy K.
        • McAlear C.A.
        • Casey G.
        • Merkel P.A.
        Diagnostic delays in vasculitis and factors associated with time to diagnosis.
        Rheumatology (Oxford). 2019; 58: 51
        • Richter J.G.
        • Muth T.
        • Li J.
        • Brinks R.
        • Chehab G.
        • Koch T.
        • Siegrist J.
        • Angerer P.
        • Huscher D.
        • Schneider M.
        Elevated Psychosocial Stress at Work in Patients with Systemic Lupus Erythematosus and Rheumatoid Arthritis.
        J Rheumatol. 2018; 45: 227-234
        • Lamprecht J.
        • Thyrolf A.
        • Mattukat K.
        • Schopf A.C.
        • Schloffel M.
        • Farin E.
        • Mau W.
        Disease-related everyday communication of persons with rheumatic and musculoskeletal diseases-Results of a participatory research project.
        Patient Educ Couns. 2017; 100: 667-672
        • Strand V.
        • Khanna D.
        The impact of rheumatoid arthritis and treatment on patients’ lives.
        Clin.Exp.Rheumatol. 2010; 28: S32-S40
        • Mease P.
        • Strand V.
        • Gladman D.
        Functional impairment measurement in psoriatic arthritis: Importance and challenges.
        Semin.Arthritis Rheum. 2018; 48: 436-448
        • Reginster J.Y.
        The prevalence and burden of arthritis.
        Rheumatology.(Oxford) 41 Supp. 2002; 1: 3-6
        • Caron-Flinterman J.F.
        • Broerse J.E.
        • Bunders J.F.
        The experiential knowledge of patients: a new resource for biomedical research?.
        Soc.Sci Med. 2005; 60: 2575-2584
        • Hewlett S.
        • Md Wit P.
        • Richards E.
        • Quest R.
        • Hughes T.
        • Heiberg J.
        • Kirwan
        Patients and professionals as research partners: challenges, practicalities, and benefits.
        Arthritis Rheum. 2006; 55: 676-680
        • Tallon D.
        • Chard J.
        • Dieppe P.
        Relation between agendas of the research community and the research consumer.
        Lancet. 2000; 355: 2037-2040
        • Nicklin J.
        • Cramp F.
        • Kirwan J.
        • Urban M.
        • Hewlett S.
        Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis.
        Arthritis Care Res (Hoboken.). 2010; 62: 1552-1558
        • Abma T.A.
        • Molewijk B.
        • Widdershoven G.A.
        Good care in ongoing dialogue. Improving the quality of care through moral deliberation and responsive evaluation.
        Health Care Anal. 2009; 17: 217-235
        • Nilsen E.S.
        • Myrhaug H.T.
        • Johansen M.
        • Oliver S.
        • Oxman A.D.
        Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.
        Cochrane Database Syst.Rev. 2006; (CD004563)
        • Strehl C.
        • Bijlsma J.W.
        • Wit M.
        • de M.
        • Boers N.
        • Caeyers M.
        • Cutolo B.
        • Dasgupta W.G.
        • Dixon R.
        • Geenen T.W.
        • Huizinga A.
        • Kent A.L.
        • de Thurah J.
        • Listing X.
        • Mariette D.W.
        • Ray H.U.
        • Scherer R.
        • Seror C.M.
        • Spies S.
        • Tarp D.
        • Wiek K.L.
        • Winthrop F.
        • Buttgereit
        Defining conditions where long-term glucocorticoid treatment has an acceptably low level of harm to facilitate implementation of existing recommendations: viewpoints from an EULAR task force.
        Ann.Rheum.Dis. 2016; 75: 952-957
        • Alunno A.
        • Studenic P.
        • Wiek D.
        • Balazova P.
        • Aletaha D.
        Missing pebble in the mosaic of rheumatic diseases and mental health: younger does not always mean happier.
        Ann.Rheum.Dis. 2019; 78: e54
        • Kiltz U.
        • Landewe R.B.M.
        • Heijde D.
        • van der M.
        • Rudwaleit M.H.
        • Weisman N.
        • Akkoc A.
        • Boonen J.
        • Brandt P.
        • Carron M.
        • Dougados L.
        • Gossec M.
        • Jongkees P.M.
        • Machado H.
        • Marzo-Ortega A.
        • Molto V.
        • Navarro-Compan K.
        • Niederman P.D.
        • Sampaio-Barros G.
        • Slobodin F.E.
        • Van den Bosch
        • Tubergen A.
        • van
        • Weely S.
        • van D.
        • Wiek J.
        • Braun
        Development of ASAS quality standards to improve the quality of health and care services for patients with axial spondyloarthritis.
        Ann.Rheum.Dis. Epub ahead of print. 2019;
        • O’Connell D.
        • Mosconi P.
        An active role for patients in clinical research?.
        Drug Dev.Res. 2006; 67: 188-192
        • Schöpf A.C.
        • Schlöffel M.
        • Amos T.
        • Thyrolf A.
        • Lamprecht J.
        • Mau W.
        • Böhm P.
        • Farin E.
        Development and Formative Evaluation of a Communication Skills Training Program for Persons with Rheumatic and Musculoskeletal Diseases.
        Health Commun. 2019; 34: 680-688
        • Garske U.
        • Böhm P.
        Wenn Patienten mitforschen.
        Zeitschrift für Rheumatologie. 2017; 76: 921
        • Elling-Audersch C.
        RheVITAL: Controlling your disease activity with an App.
        Ann.Rheum.Dis. 2019; 78: 9
        • de Wit M.P.
        • Kvien T.K.
        • Gossec L.
        Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology.
        RMD. Open. 2015; 1: e000129
        • Frank L.
        • Wit M.
        • de J.R.
        • Kirwan F.
        • Guillemin S.J.
        • Bartlett
        Author Response: Patient Engagement.
        Value.Health. 2017; 20: 1433
        • Tillett W.
        • Adebajo A.
        • Brooke M.
        • Campbell W.
        • Coates L.C.
        • FitzGerald O.
        • Gossec L.
        • Helliwell P.
        • Hewlett S.
        • James J.
        • Minnock P.
        • Reast A.
        • O'Sullivan D.
        • Wit M.
        • de N.
        • McHugh
        Patient involvement in outcome measures for psoriatic arthritis.
        Curr.Rheumatol.Rep. 2014; 16: 418
        • de Wit M.
        • Beurskens A.
        • Piskur B.
        • Stoffers E.
        • Moser A.
        Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research.
        Health Expect. 2018; 21: 752-763