000278092 001__ 278092 000278092 005__ 20250518001251.0 000278092 0247_ $$2doi$$a10.1186/s40900-025-00719-x 000278092 0247_ $$2pmid$$apmid:40307861 000278092 0247_ $$2pmc$$apmc:PMC12044785 000278092 0247_ $$2altmetric$$aaltmetric:176656726 000278092 037__ $$aDZNE-2025-00578 000278092 041__ $$aEnglish 000278092 082__ $$a610 000278092 1001_ $$0P:(DE-2719)2811770$$aRommerskirch-Manietta, Mike$$b0$$eFirst author$$udzne 000278092 245__ $$aLessons learned from the participatory development of a framework to actively involve people living with dementia, individuals from their social networks, and healthcare professionals in systematic reviews: the DECIDE-SR study. 000278092 260__ $$aLondon$$bBioMed Central$$c2025 000278092 3367_ $$2DRIVER$$aarticle 000278092 3367_ $$2DataCite$$aOutput Types/Journal article 000278092 3367_ $$0PUB:(DE-HGF)16$$2PUB:(DE-HGF)$$aJournal Article$$bjournal$$mjournal$$s1747313240_2560 000278092 3367_ $$2BibTeX$$aARTICLE 000278092 3367_ $$2ORCID$$aJOURNAL_ARTICLE 000278092 3367_ $$00$$2EndNote$$aJournal Article 000278092 520__ $$aTo date, there is no framework for actively involving people living with dementia, individuals from their social networks and healthcare professionals in systematic reviews (SRs). Additionally, no SRs have been planned or partially carried out with the active involvement of these individuals. For these reasons, a framework and a review protocol for a planned SR were developed as part of the federal-funded DECIDE-SR project, in which the abovementioned groups were actively involved as coresearchers. The purpose of this paper is to provide an overview of the project and to illustrate the lessons learned from conducting active research involving this case example.A framework for actively involving coresearchers in SRs was developed via the synthesis of theoretical and empirical findings from a previous research project. The coresearchers participated in meetings and one workshop, which were planned on the basis of the INVOLVE criteria and the ACTIVE framework model, to test and reflect on the previously developed framework. Additionally, an SR protocol was jointly planned during these meetings, and individual SR steps were conducted (e.g., development of the research question). The lessons learned were drawn from the workshop with the coresearchers, who were clustered using the Engaging with Purpose Patient Engagement Framework (EwPPEF).Eight coresearchers were actively involved in 15 meetings and one workshop to test and reflect on the framework. The framework allows coresearchers to individually choose their own level of involvement (where the levels are nonhierarchical), and the individual support needs at each step of an SR are considered. Additionally, an SR protocol was developed together with the research question 'What is the effect of hospital treatment provided in one's own living place on people living with dementia?'. The lessons learned provide information on all aspects of the EwPPEF (e.g., cobuilding, impact, and inclusiveness) and include implications for conducting SRs that actively involve the public.The framework and the SR protocol can now be used for further tests and to gain initial experience in conducting SRs that actively involve the public. Furthermore, the lessons learned can provide other project groups with important insights into actively planning and conducting SRs. 000278092 536__ $$0G:(DE-HGF)POF4-353$$a353 - Clinical and Health Care Research (POF4-353)$$cPOF4-353$$fPOF IV$$x0 000278092 588__ $$aDataset connected to CrossRef, PubMed, , Journals: pub.dzne.de 000278092 650_7 $$2Other$$aCollaboration 000278092 650_7 $$2Other$$aDementia 000278092 650_7 $$2Other$$aFramework 000278092 650_7 $$2Other$$aParticipatory research 000278092 650_7 $$2Other$$aPublic 000278092 7001_ $$0P:(DE-2719)2812204$$aManietta, Christina$$b1$$udzne 000278092 7001_ $$0P:(DE-2719)9000888$$aHoffmann-Hoffrichter, Anna Louisa$$b2$$udzne 000278092 7001_ $$0P:(DE-HGF)0$$aRohra, Helga$$b3 000278092 7001_ $$aFink, Lisa$$b4 000278092 7001_ $$aKelleter, Heidemarie$$b5 000278092 7001_ $$aBreimaier, Helga Elisabeth$$b6 000278092 7001_ $$aMöller, Johanna$$b7 000278092 7001_ $$aOberfeld, Stefanie$$b8 000278092 7001_ $$aAlpers, Birgit$$b9 000278092 7001_ $$0P:(DE-2719)2810690$$aRoes, Martina$$b10$$eLast author$$udzne 000278092 773__ $$0PERI:(DE-600)2834246-X$$a10.1186/s40900-025-00719-x$$gVol. 11, no. 1, p. 39$$n1$$p39$$tResearch involvement and engagement$$v11$$x2056-7529$$y2025 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578%20SUP.docx 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578.pdf$$yOpenAccess 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578%20SUP.doc 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578%20SUP.odt 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578%20SUP.pdf 000278092 8564_ $$uhttps://pub.dzne.de/record/278092/files/DZNE-2025-00578.pdf?subformat=pdfa$$xpdfa$$yOpenAccess 000278092 909CO $$ooai:pub.dzne.de:278092$$pdnbdelivery$$pdriver$$pVDB$$popen_access$$popenaire 000278092 9101_ $$0I:(DE-588)1065079516$$6P:(DE-2719)2811770$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b0$$kDZNE 000278092 9101_ $$0I:(DE-588)1065079516$$6P:(DE-2719)2812204$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b1$$kDZNE 000278092 9101_ $$0I:(DE-588)1065079516$$6P:(DE-2719)9000888$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b2$$kDZNE 000278092 9101_ $$0I:(DE-588)1065079516$$6P:(DE-HGF)0$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b3$$kDZNE 000278092 9101_ $$0I:(DE-588)1065079516$$6P:(DE-2719)2810690$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b10$$kDZNE 000278092 9131_ $$0G:(DE-HGF)POF4-353$$1G:(DE-HGF)POF4-350$$2G:(DE-HGF)POF4-300$$3G:(DE-HGF)POF4$$4G:(DE-HGF)POF$$aDE-HGF$$bGesundheit$$lNeurodegenerative Diseases$$vClinical and Health Care Research$$x0 000278092 9141_ $$y2025 000278092 915__ $$0StatID:(DE-HGF)0200$$2StatID$$aDBCoverage$$bSCOPUS$$d2025-01-07 000278092 915__ $$0LIC:(DE-HGF)CCBYNCND4$$2HGFVOC$$aCreative Commons Attribution-NonCommercial-NoDerivs CC BY-NC-ND 4.0 000278092 915__ $$0StatID:(DE-HGF)0501$$2StatID$$aDBCoverage$$bDOAJ Seal$$d2024-04-10T15:44:49Z 000278092 915__ $$0StatID:(DE-HGF)0500$$2StatID$$aDBCoverage$$bDOAJ$$d2024-04-10T15:44:49Z 000278092 915__ $$0StatID:(DE-HGF)0510$$2StatID$$aOpenAccess 000278092 915__ $$0StatID:(DE-HGF)0030$$2StatID$$aPeer Review$$bDOAJ : Open peer review$$d2024-04-10T15:44:49Z 000278092 915__ $$0StatID:(DE-HGF)0561$$2StatID$$aArticle Processing Charges$$d2025-01-07 000278092 915__ $$0StatID:(DE-HGF)0300$$2StatID$$aDBCoverage$$bMedline$$d2025-01-07 000278092 915__ $$0StatID:(DE-HGF)0700$$2StatID$$aFees$$d2025-01-07 000278092 9201_ $$0I:(DE-2719)1610003$$kAG Roes$$lImplementation Science & Person-Centered Dementia Care$$x0 000278092 9201_ $$0I:(DE-2719)1610002$$kAG Holle$$lCare Structures$$x1 000278092 980__ $$ajournal 000278092 980__ $$aVDB 000278092 980__ $$aUNRESTRICTED 000278092 980__ $$aI:(DE-2719)1610003 000278092 980__ $$aI:(DE-2719)1610002 000278092 9801_ $$aFullTexts