Opportunities and challenges of active patient involvement in clinical research in Germany - from the perspectives of a patient representative, a clinical researcher and two staff members of research funding management

被引:2
|
作者
Schilling, Imke [1 ,2 ]
Bleidorn, Jutta [3 ]
Ehrmann, Udo [4 ]
Muller-Fries, Eva [5 ]
Rathjen, Kim Isabel [1 ,2 ]
Saedler, Katarzyna [5 ]
机构
[1] Univ Bremen, Abt Versorgungsforsch, Inst Publ Hlth & Pflegeforsch, Bremen, Germany
[2] Univ Bremen, Hlth Sci Bremen, Bremen, Germany
[3] Univ Klinikum Jena, Inst Allgemeinmed, Jena, Germany
[4] Bundesverband Prostatakrebs Selbsthilfe eV BPS, Bonn, Germany
[5] Univ Med, Deutsch Zentrum Luft & Raumfahrt eV DLR, DLR Projekttrager, Bereich Gesundheit,Abt Klin Forsch,Digitale Gesun, Bonn, Germany
关键词
Patient and public involvement; Germany; Impact; Selection; Education; PUBLIC INVOLVEMENT; HEALTH RESEARCH; CARE;
D O I
10.1016/j.zefq.2021.03.003
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
Background: Active involvement of patients in clinical research is increasingly demanded in Germany. It has great potential to increase the quality and relevance of research and to contribute to patient empowerment. However, patients, researchers and research funders have experienced that the implementation of patient involvement is accompanied by cultural, practical and personal challenges. The aim of this article is to discuss the opportunities and challenges of patient involvement in Germany from the perspective of the stakeholders involved. Method: A patient representative, a clinical researcher and two staff members from research funding management were invited to discuss the opportunities and challenges of patient involvement. Their perspectives were recorded in two written open survey rounds. The answers were analyzed using qualitative content analysis. Result: In the opinion of the stakeholders involved, the increasing involvement of patients in clinical research is an opportunity to promote the practical relevance of research and the implementation of studies, to increase their acceptance by the target group and to improve the uptake of research results in practice. However, the implementation of patient involvement was also perceived as challenging. They described problems with regard to the acquisition and selection of patients, the training of the patients and the specifications and support structures for the implementation of patient involvement. Discussion: While patient involvement in clinical research offers great potential, the development of appropriate structures and framework conditions for its implementation is still virtually unestablished in Germany. This needs to include, among other things, creating a broader awareness of the potential of patient involvement, developing training programs for patients and researchers, providing sufficient, mainly project-independent resources and ensuring regular evaluations.
引用
收藏
页码:66 / 75
页数:10
相关论文
共 27 条
  • [1] Challenges and opportunities in research funding for neurovascular diseases from a clinical researcher's perspective
    Ospel, Johanna Maria
    McDonough, Rosalie
    Ganesh, Aravind
    Sehgal, Arshia
    Kappelhof, Manon
    Kashani, Nima
    Klijn, Karin
    Hill, Michael
    Saver, Jeffrey
    Goyal, Mayank
    [J]. INTERVENTIONAL NEURORADIOLOGY, 2023, 29 (04) : 343 - 350
  • [2] EXPERIENCES OF BEING A PATIENT AND PUBLIC INVOLVEMENT REPRESENTATIVE FOR CLINICAL RHEUMATOLOGY RESEARCH
    Wells, Ruth
    [J]. RHEUMATOLOGY, 2014, 53 : 8 - 8
  • [3] From Nonclinical Research to Clinical Trials and Patient-registries: Challenges and Opportunities in Biomedical Research
    de la Torre Hernandez, Jose M.
    Edelman, Elazer R.
    [J]. REVISTA ESPANOLA DE CARDIOLOGIA, 2017, 70 (12): : 1121 - 1133
  • [4] Defining Patient-Centricity: Opportunities, Challenges, and Implications for Clinical Care and Research
    Robbins, Dennis A.
    Curro, Frederick A.
    Fox, Chester H.
    [J]. THERAPEUTIC INNOVATION & REGULATORY SCIENCE, 2013, 47 (03) : 349 - 355
  • [5] Defining Patient-Centricity: Opportunities, Challenges, and Implications for Clinical Care and Research
    Dennis A. Robbins
    Frederick A. Curro
    Chester H. Fox
    [J]. Therapeutic Innovation & Regulatory Science, 2013, 47 : 349 - 355
  • [6] Clinical research benefits from patient involvement-the evidence
    Morgan, Adrienne
    Wilcox, Maggie
    MacKenzie, Mairead
    Turner, Lesley
    Gath, Jacqui
    Fairbrother, Pat
    [J]. BREAST CANCER RESEARCH AND TREATMENT, 2016, 159 (01) : 189 - 190
  • [7] The role and impact of patient and public involvement and engagement (PPIE) in clinical research: perspectives from Keele CTU project management
    Myers, Helen
    Lawton, Sarah A.
    Garvin, Stefannie
    Blackburn, Steven
    [J]. TRIALS, 2017, 18
  • [8] Acceptability of donor funding for clinical trials in the UK: a qualitative empirical ethics study using focus groups to elicit the views of research patient public involvement group members, research ethics committee chairs and clinical researchers
    Shearman, Kirstie
    Masters, Alexander
    Nutt, Dominic
    Bowman, Simon
    Draper, Heather
    [J]. BMJ OPEN, 2022, 12 (06):
  • [9] Patient Priorities in RA Research - An Exploration of Patient Perspectives from those Enrolled in the Ontario Best Practices Research Initiative (OBRI) Clinical Registry
    Fullerton, Laura
    Cesta, Angela
    Hofstetter, Cathy
    Couto, Sandra
    Bombardier, Claire
    [J]. JOURNAL OF RHEUMATOLOGY, 2015, 42 (07) : 1311 - 1312
  • [10] PATIENT PERSPECTIVES ON WEIGHT MANAGEMENT IN PRIMARY CARE: CROSS-SECTIONAL ANALYSIS FROM THE PATH CLINICAL DATA RESEARCH NETWORK
    Jain, Seema
    Rothenberger, Scott D.
    Bennett, Wendy L.
    Clark, Jeanne M.
    Conroy, Molly
    Herring, Sharon J.
    Kraschnewski, Jennifer
    Lent, Michelle R.
    Bramante, Carolyn
    Cappella, Nickie K.
    Lehmann, Harold
    McTigue, Kathleen M.
    [J]. JOURNAL OF GENERAL INTERNAL MEDICINE, 2018, 33 : S278 - S279