Establishing a standing patient advisory board in family practice research: A qualitative evaluation from patients' and researchers' perspectives

被引:2
作者
Engler, Jennifer [1 ]
Engler, Fabian [1 ]
Gerber, Meike [1 ,3 ]
Brosse, Franziska [2 ]
Voigt, Karen [2 ]
Mergenthal, Karola [1 ]
机构
[1] Goethe Univ Frankfurt Main, Inst Gen Practice, Fac Med, Theodor Stern Kai 7, D-60590 Frankfurt, Germany
[2] Tech Univ Dresden, Fac Med Carl Gustav Carus, Dept Gen Practice, Med Clin 3, Dresden, Germany
[3] Tech Univ Dresden, Inst Hist Med, Fac Med Carl Gustav Carus, Fetscherstr 74, D-01307 Dresden, Germany
关键词
citizen science; family practice; patient empowerment; stakeholder participation; PUBLIC INVOLVEMENT; ENGAGEMENT; IMPACT;
D O I
10.1111/hex.14094
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
IntroductionPatient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives.MethodsAfter each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis.ResultsWe analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback.ConclusionThe establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives.Patient or Public ContributionThis study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.
引用
收藏
页数:10
相关论文
共 30 条
[1]  
[Anonymous], 2021, Briefing notes for researchers-public involvement in NHS, health and social care research
[2]   Increasing value and reducing waste by optimizing the development of complex interventions: Enriching the development phase of the Medical Research Council (MRC) Framework [J].
Bleijenberg, Nienke ;
de Man-van Ginkel, Janneke M. ;
Trappenburg, Jaap C. A. ;
Ettema, Roelof G. A. ;
Sino, Carolien G. ;
Heim, Noor ;
Hafsteindottir, Thora B. ;
Richards, David A. ;
Schuurmans, Marieke J. .
INTERNATIONAL JOURNAL OF NURSING STUDIES, 2018, 79 :86-93
[3]   Patient and public engagement in research and health system decision making: A systematic review of evaluation tools [J].
Boivin, Antoine ;
L'Esperance, Audrey ;
Gauvin, Francois-Pierre ;
Dumez, Vincent ;
Macaulay, Ann C. ;
Lehoux, Pascale ;
Abelson, Julia .
HEALTH EXPECTATIONS, 2018, 21 (06) :1075-1084
[4]  
Braun V., 2006, Qual Res Psychol, V3, P77, DOI [DOI 10.1191/1478088706QP063OA, 10.1037/13620-004, DOI 10.1037/13620-004]
[5]   A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities [J].
Brett, Jo ;
Staniszewska, Sophie ;
Mockford, Carole ;
Herron-Marx, Sandra ;
Hughes, John ;
Tysall, Colin ;
Suleman, Rashida .
PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, 2014, 7 (04) :387-395
[6]   Mapping the impact of patient and public involvement on health and social care research: a systematic review [J].
Brett, Jo ;
Staniszewska, Sophie ;
Mockford, Carole ;
Herron-Marx, Sandra ;
Hughes, John ;
Tysall, Colin ;
Suleman, Rashida .
HEALTH EXPECTATIONS, 2014, 17 (05) :637-650
[7]  
Brighton Lisa Jane, 2018, Res Involv Engagem, V4, P14, DOI [10.1186/s40900-018-0097-z, 10.1186/s40900-018-0097-z]
[8]   Development of an intervention to improve informational continuity of care in older patients with polypharmacy at the interface between general practice and hospital care: protocol for a participatory qualitative study in Germany [J].
Brueckle, Maria-Sophie ;
Dinh, Truc Sophia ;
Klein, Astrid-Alexandra ;
Rietschel, Lisa ;
Petermann, Jenny ;
Brosse, Franziska ;
Schulz-Rothe, Sylvia ;
Gonzalez-Gonzalez, Ana Isabel ;
Kramer, Martin ;
Engler, Jennifer ;
Mergenthal, Karola ;
Muth, Christiane ;
Voigt, Karen ;
van den Akker, Marjan .
BMJ OPEN, 2022, 12 (04)
[9]  
DESAM-ForNet, 2025, Initiative of German practice-based research networks-DESAM-ForNet
[10]  
Engler J., 2021, Zeitschrift fur Allgemeinmedizin, V97, P275