Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Aug 30;9(1):72.
doi: 10.1186/s40900-023-00490-x.

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Kristine Elberg Dengsø #  1   2 , Sofie Tscherning Lindholm #  3 , Suzanne Forsyth Herling  4   5 , Maja Pedersen  6 , Kristina Holmegaard Nørskov  6 , Marie Oxenbøll Collet  4   7 , Iben Husted Nielsen  6 , Mille Guldager Christiansen  8 , Mette Schaufuss Engedal  6 , Helga Wallin Moen  9 , Karin Piil  8   10 , Ingrid Egerod  4   7 , Mogens Hørder  11 , Mary Jarden  4   12
Affiliations

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Kristine Elberg Dengsø et al. Res Involv Engagem. .

Abstract

Background: Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.

Objective: The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.

Methods: We conducted a scoping review using nine scientific databases and gray literature from 1992-2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.

Results: A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.

Conclusion: The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

Plain language summary

Over the past decades the importance of involving patients and the public as active partners in healthcare research has received growing acknowledgement internationally. Nonetheless, our knowledge regarding the degree of patient and public involvement (PPI) in the Nordic countries remains limited. This paper addresses this gap by investigating the status, management, and influence of PPI in healthcare research within the Nordic countries. The review of these aspects has given us a better understanding of PPI and its effects on healthcare research in the Nordic region. We looked at scientific databases and webpages including research papers, commentaries, and other materials from Denmark, Norway, Sweden, Finland, and Iceland. Our goal was to gather information and provide a thorough overview of PPI practices. Our findings showed that PPI is growing with gained acceptance across different areas of health research. PPI was used at different stages of the research process, but there wasn’t a common agreement on its importance and the additional value it brings to the quality of research. The study was challenged by the many different terms and definitions, which affected the clarity of our study’s purpose (or goals).However, we made efforts to address this by carefully reviewing the different terms and definitions used in the literature, striving to capture the essence of PPI in our analysis. By acknowledging this variation, we aimed to provide a wide-ranging overview while identifying the complexities and nuances related with PPI in the Nordic healthcare research. We assume that achieving international agreement on terms and definitions of PPI would certainly improve the trustworthiness in future reviews.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
PRISMA flowchart visualizing the overview of the inclusion and exclusion of papers in the systematic screening process
Fig. 2
Fig. 2
Distribution of the included papers (n = 56) in relation to categorization based on origin the categorization was performed in relation to how the authors of the papers explicitly defined their own paper
Fig. 3
Fig. 3
Overview of methods applied on origin. Thirty-two studies reported one or more methods; thus the number of methods is not related to the number of studies. Different written data covers e.g. sticky notes, email correspondence and transcripts from meetings
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Grill C. Involving stakeholders in research priority setting: a scoping review. Res Involv Engagem. 2021;7(1):75. doi: 10.1186/s40900-021-00318-6. - DOI - PMC - PubMed
    1. Sand A-S, Grimsgaard S, Pettersen I. Patient and public involvement in health research: A Nordic perspective. Scandinavian Journal of Public Health. 2020;48(1):119–121. doi: 10.1177/1403494819863522. - DOI - PMC - PubMed
    1. Nygaard A, Halvorsrud L, Linnerud S, Grov EK, Bergland A. The James Lind Alliance process approach: scoping review. BMJ Open. 2019;9(8):e027473. doi: 10.1136/bmjopen-2018-027473. - DOI - PMC - PubMed
    1. Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–1166. doi: 10.1111/hex.12090. - DOI - PMC - PubMed
    1. Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: A systematic review. Health Soc Care Community. 2021;29(1):18–27. doi: 10.1111/hsc.13111. - DOI - PubMed

Publication types

LinkOut - more resources