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      Aktive Patient*innen- und Bürger*innen-Beteiligung in der allgemeinmedizinischen Forschung : Methodische Ansätze und Konzepte in den Netzen der Initiative Deutscher Forschungspraxennetze – DESAM-ForNet Translated title: Patient and Public Involvement in Family Medicine Research : Methodological Approaches and Concepts Applied in the Networks of the Initiative of Family Practice-Based Research Networks – DESAM-ForNet

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          Abstract

          Die Beteiligung von Patient*innen und Bürger*innen an Forschung gewinnt in Deutschland an Bedeutung und wird auch in allgemeinmedizinischer Forschung vermehrt umgesetzt. Internationale Empfehlungen bieten zwar Anhaltspunkte, wie Beteiligung ausgestaltet werden und gelingen kann, ergänzend ist jedoch ein settingbezogener Austausch über Konzepte unabdinglich, um voneinander zu lernen. Dieser Artikel gibt daher einen Überblick über die Konzepte der Patient*innenund Bürger*innen-Beteiligung in den Netzen der Initiative Deutscher Forschungspraxennetze DESAM-ForNet. In den Netzen der Initiative werden Bürger*innen und Patient*innen in wiederkehrenden Gruppentreffen in sogenannten „Bürgerforen“ (BayFoNet), „Runden Tischen“ (FoPraNet-BW) oder „Patient*innen-Beiräten“ (HAFO.NRW, RESPoNsE, SaxoForN) in den Forschungsprozess eingebunden, schwerpunktmäßig in den Bereichen Studienkonzeption, Ergebnistransfer und Dissemination. Patient*innen wurden bislang am erfolgreichsten über die persönliche Ansprache durch Hausärzt*innen, Aushänge, lokale Selbsthilfeverbände und universitäre Simulationspatient*innen-Programme erreicht. Die Evaluation der Beteiligungsformate ist in den meisten Forschungspraxennetzen noch in Planung. Insgesamt zeigen die netzspezifischen Beteiligungskonzepte verschiedene Möglichkeiten der langfristigen, kollaborativen Patient*innen- und Bürger*innen-Beteiligung. Sie sollen Anregungen für die Entwicklung und Erprobung individuell passender Beteiligungskonzepte an allgemeinmedizinischer Forschung geben.

          Translated abstract

          Patient and Public Involvement (PPI) has gained importance in Germany and is also increasingly implemented in research in family medicine. Internationally, diverse frameworks give recommendations on how to successfully design and implement PPI in specific contexts. However, it is crucial to share experiences on PPI in specific settings such as family medicine in order to learn from each other. Thus, this article provides an overview of PPI concepts in the practice-based research networks (PBRNs) of the Initiative of German Practice-Based Research Networks – DESAM-ForNet. In the PBRNs patients and the public are involved in the research process by repeated group meetings in “public forums“ (BayFoNet), “round tables“ (FoPraNet-BW) or “patient advisory boards” (HAFO.NRW, RESPoNsE, SaxoForN) with a special focus on the planning and dissemination phase of projects. The most successful recruitment strategies so far have encompassed individual patient contacts of family physicians, postings/posters, local self-help organizations and standardized patient programs. Evaluation of PPI is currently being designed in most PBRNS. Overall, the PBRN-specific PPI concepts represent diverse possibilities to create long-term collaborative partnerships with patients and the public. These exemplary concepts are meant to encourage the further development and implementation of adapted PPI-concepts in family medicine research.

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          Patient engagement in research: a systematic review

          Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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            Mapping the impact of patient and public involvement on health and social care research: a systematic review.

            There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.
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              Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

              Abstract Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.
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                Author and article information

                Contributors
                engler@allgemeinmedizin.uni-frankfurt.de
                Journal
                ZFA (Stuttgart)
                ZFA (Stuttgart)
                Zfa. Zeitschrift Fur Allgemeinmedizin
                Springer Medizin (Heidelberg )
                1433-6251
                1439-9229
                1 May 2022
                2022
                : 98
                : 5
                : 178-183
                Affiliations
                [1 ]GRID grid.7839.5, ISNI 0000 0004 1936 9721, Institut für Allgemeinmedizin, , Goethe-Universität Frankfurt am Main, ; Theodor-Stern-Kai 7, Frankfurt, 60590 Deutschland
                [2 ]GRID grid.484013.a, ISNI 0000 0004 6879 971X, Institut für Allgemeinmedizin, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, , Berlin Institute of Health, ; Berlin, Deutschland
                [3 ]GRID grid.412581.b, ISNI 0000 0000 9024 6397, Institut für Allgemeinmedizin und Ambulante Gesundheitsversorgung (IMAG), , Universität Witten/Herdecke, ; Deutschland
                [4 ]GRID grid.411760.5, ISNI 0000 0001 1378 7891, Institut für Allgemeinmedizin, , Universitätsklinikum Würzburg, ; Deutschland
                [5 ]GRID grid.5253.1, ISNI 0000 0001 0328 4908, Abteilung Allgemeinmedizin und Versorgungsforschung, , Universitätsklinikum Heidelberg, ; Deutschland
                Article
                980504
                10.53180/zfa.2022.0178-0183
                10224657
                37274354
                48e1caee-5f33-468e-bdc3-dd6497b0e1c7
                © Deutscher Ärzteverlag 2022

                This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

                History
                : 14 February 2022
                : 17 March 2022
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                © Deutscher Ärzteverlag 2022

                partizipation,patientenbeteiligung,bürgerbeteiligung,forschungspraxennetze,allgemeinmedizin,participation,patient and public involvement,practice-based research networks,family medicine

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