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Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research

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Title: Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research
Authors: Schilling, Imke, Gerhardus, Ansgar
Source: BMC Med Res Methodol
BMC Medical Research Methodology, Vol 24, Iss 1, Pp 1-12 (2024)
Publisher Information: Springer Science and Business Media LLC, 2024.
Publication Year: 2024
Subject Terms: Medicine (General), R5-920, Biomedical Research, Patient and public involvement, PPI, Clinical Research, Research, Community Participation, Humans, Empowerment, Patient Participation, Power, Psychological, Biomedical Research/methods [MeSH], Humans [MeSH], Inclusive methodological awareness for equity and diversity, Power, Psychological [MeSH], Community Participation/psychology [MeSH], Community Participation/methods [MeSH], Patient Participation/psychology [MeSH], Empowerment [MeSH], Patient Participation/methods [MeSH]
Description: Background There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients’ diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients’ capacity to advocate for their rights and needs. Methods We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations. Results Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields. Conclusion PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.
Document Type: Article
Other literature type
Language: English
ISSN: 1471-2288
DOI: 10.1186/s12874-024-02323-1
Access URL: https://pubmed.ncbi.nlm.nih.gov/39272031
https://doaj.org/article/2d19cfa1a5dc4cfc9265192c90b8e56f
https://repository.publisso.de/resource/frl:6502407
Rights: CC BY
Accession Number: edsair.doi.dedup.....572dacb41430e96f7e5d72b20bcff992
Database: OpenAIRE
Description
Abstract:Background There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients’ diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients’ capacity to advocate for their rights and needs. Methods We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations. Results Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields. Conclusion PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.
ISSN:14712288
DOI:10.1186/s12874-024-02323-1