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@ARTICLE{RommerskirchManietta:278092,
      author       = {Rommerskirch-Manietta, Mike and Manietta, Christina and
                      Hoffmann-Hoffrichter, Anna Louisa and Rohra, Helga and Fink,
                      Lisa and Kelleter, Heidemarie and Breimaier, Helga Elisabeth
                      and Möller, Johanna and Oberfeld, Stefanie and Alpers,
                      Birgit and Roes, Martina},
      title        = {{L}essons 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.},
      journal      = {Research involvement and engagement},
      volume       = {11},
      number       = {1},
      issn         = {2056-7529},
      address      = {London},
      publisher    = {BioMed Central},
      reportid     = {DZNE-2025-00578},
      pages        = {39},
      year         = {2025},
      abstract     = {To 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.},
      keywords     = {Collaboration (Other) / Dementia (Other) / Framework
                      (Other) / Participatory research (Other) / Public (Other)},
      cin          = {AG Roes / AG Holle},
      ddc          = {610},
      cid          = {I:(DE-2719)1610003 / I:(DE-2719)1610002},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40307861},
      pmc          = {pmc:PMC12044785},
      doi          = {10.1186/s40900-025-00719-x},
      url          = {https://pub.dzne.de/record/278092},
}