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Participation of stakeholders in health services research: political expectations, benefits and practical impulses

Participatory research approaches are increasingly being used in the field of health (Clar/Wright 2020; Jilani et al. 2020). They are also increasingly facing political demands in order to be able to design research in the field of health in a needs-based and care-oriented manner. In the coalition agreement, the federal government has stipulated the strengthening of citizens' participation in research (The Federal Government 2021). Participation and dialogue with citizens, those affected, relatives and actors is seen as an important navigation tool in the healthcare system (BMBF 2016; BMBF 2021). Participatory research is not only seen as useful, but in some areas even as essential, e.g. B. to increase acceptance of new offers or forms of care (BMBF 2021a; Seeralan et al. 2020; van Beusekom et al. 2018). Despite the political will and the increasing spread of participatory approaches in various areas of life and research, they still find little application and/or recognition in the area of German health services research.

>> From the authors' perspective, five factors are responsible for this: (1) insufficient knowledge about the reason and purpose of participatory research approaches, (2) misunderstandings and divergent views regarding the form, intensity, timing, and the groups of people to be involved, (3) a lack of resources, skills, and experience in involving stakeholders in the research process, (4) a lack of documentation tools that enable the compact, easily applicable, and accessible presentation of participatory research approaches, and (5) insufficient incentives (e.g., obligations or opportunities on the part of funders or publishing houses) to describe active participation. These inhibiting factors also specifically indicate which issues ("adjustment screws") can be addressed to promote participatory approaches in health services research in Germany.
This article addresses these points and answers four central questions: (1) What are the rationale and purpose of participatory research approaches? (2) What is participatory research and who should be involved, when, where, and how? (3) What prerequisites and competencies are required? (4) How can participatory research be made transparent?
What are the reasons and purposes of participatory
Research approaches?
Internationally and nationally, participation is often primarily associated with the values of the democracy, empowerment, and emancipation movements. As enshrined in the UN Convention on Human Rights, participation is a human right, as it is an inseparable component of self-determination (Schnell/Dunger 2018). This right must therefore also be considered in health services research and, from a research ethics perspective, justifies participatory approaches.
The purpose of participatory research approaches is to increase the relevance, quality, and usefulness of research (Balazs/Morello-Froschl 2013). Stakeholder involvement in the development of the research question ensures high practical relevance of the research while avoiding useless research (Glasziou/Chalmers 2018). An important prerequisite for the practical use of research results is acceptance (e.g., of new interventions or results) (Salm et al. 2021). Participatory approaches promote this acceptance because, through stakeholder participation in the research process, they gain a better understanding of the research approach and process, as well as trust in the study and its results (Rackerseder et al. 2022). Acceptance of the results contributes significantly to their sustainable use in practice (Brandt 2007; Cargo/Mercer 2008).
In addition to relevance and usefulness, it is above all the quality of research that is improved through participatory approaches (Balazs/Morello-Frosch 2013; Cargo/Mercer 2008; Wright 2013). For example, the different stakeholders contribute multiple perspectives and expertise, thus helping to gain a comprehensive, context-specific understanding of the research subject (Brandt 2007; Döring/Bortz 2016; Unger 2014; Rackerseder et al. 2022). When developing and testing new forms of care, this diversity of perspectives may be essential to achieving "product maturity" that can also function under real-world conditions of standard care (van Beusekom et al. 2018). Furthermore, project information materials and data collection tools can be tailored to the needs of the project through the active participation of stakeholder representatives (Rackerseder et al. 2022; Krieger et al. 2022). Field access and willingness to participate are often improved through the active involvement of stakeholders. Furthermore, early participation has a positive impact on the interpretation of results and the development of differentiated recommendations for action (van Beusekom et al. 2018).
What is participatory research and who should be involved, when, where and how?
Contrary to popular belief, participatory research is not a method. Rather, it is a stance or approach, and thus applicable regardless of discipline or research method (Bergold/Thomas 2012). Participatory approaches are referred to by various names that utilize different methods and approaches (Vaugh/Jacquez 2020). Internationally, the approach is characterized by the term "Participatory Health Research (PHR)" of the International Organization for Participatory Health Research (ICPHR), which emerged from a wide variety of participatory currents (Wright 2013). "Community-Based Participatory Research (CBPR)," "Patient-Centered Out-
comes Research”, “Stakeholder Involvement”, “Patient and Public Involvement” or “Public and Patient Involvement (PPI)”.
their working methods focus on participation (Wallerstein 2018; Frank et al. 2014; Pollok et al. 2019; School of Primary Care Research 2022).
In German-speaking countries, participatory research is particularly promoted by the Network for Participatory Health Research (PartNet), which uses the term "participatory health research" (PGF) (PartNet, 2015). Furthermore, the working group of the same name within the German Network for Health Services Research (DNVF) refers to "participatory health services research" or "participatory (evaluation) research" by evaluating institutes, organizations, or networks (Federal Agency for Civic Education 2019; Nexus Academy 2022).
Despite all the differences, the terms and approaches share one characteristic: those who are typically the subjects of research and/or affected by or involved in the research object are actively involved in the research process and thus become subjects. Another characteristic of participatory research is that non-scientists also participate in research processes (Bergold and Thomas 2013; PartNet 2022).
In participatory research, both the intensity (synonym: degree, level, or form of participation) and the timing of participation in the research process, as well as the stakeholders in the different project phases, can vary. The stage model of participation, which was developed in line with the democratic understanding and applied to participatory research approaches, suggests that a high level of participation is generally desirable. This is also reflected in the aforementioned approach to participatory health research, which speaks of co-researchers and working on an equal footing. This stage model is appropriate with regard to the democratic goal dimension. However, it appears to be only partially beneficial for the dissemination of participatory approaches in health services research and/or health system development. The idea that participatory research is only good if the highest level is reached can lead to rejection among professional researchers. For a research project or project phase, the highest level of involvement may not always be the best (Tollbara/Garcia-Martin 2022).
The degree of involvement in research varies greatly. The intensity depends, for example, on the research subject, the contextual circumstances (e.g., availability of patient representatives, competencies, skills, or resources), and previous participation experiences (e.g., willingness or openness to participate). If the research process is divided into seven phases, the active participation of the various stakeholders is, in principle, possible from the start to the end point—i.e., from the generation of ideas to the dissemination of results (Table 1).
There is no universally valid answer to the question "Who should be involved, when, where, and how?" Fundamentally, the involvement of all stakeholders should be considered. A stakeholder analysis is a prerequisite for this (Franco-Trigo et al. 2020; Brugha/Varvasovszky 2000). It is recommended to jointly reflect on the participation opportunities of the various stakeholders in all project phases (Unger 2014).
What prerequisites and skills are necessary for participatory research?
Participatory research approaches are more challenging and resource-intensive than "traditional" research (Bär et al. 2021; Cargo/Mercer 2008; Rackerseder et al. 2022). A necessary prerequisite for participatory research is the open and appreciative attitude of the stakeholders toward the project and of the project participants toward all stakeholders, their perspectives, and interests. Project leaders play a special role in participatory research (Evans/Jones 2004). Addressing and establishing contact with stakeholders and moderating bilateral and collective exchange requires communicative skills, including the ability to create a space in which differing opinions can be discussed together and constructive solutions found in the event of conflicts of interest (Bergold/Thomas 2012). Methods for team development and reflection are recommended. To enable active participation, it is advisable to plan and allocate appropriate resources already during the conception phase.
Depending on the intended intensity of participation and phase, specific methodological and instrumental skills are also required. There is no universally applicable scheme for using the various participatory instruments. To maintain high quality and meaningfulness, it is recommended to ensure methodological pluralism, multidimensionality, and diversity of perspectives in data collection (Keeley et al. 2019; Bergold/Thomas 2012). This requires a high level of methodological competence and experience on the participatory "toolbox" of participants, which can be compensated for by external expertise if necessary. In German-speaking countries, very little knowledge about the participatory "toolbox" is available to date. However, some tried-and-tested instruments already exist, such as the "Self-Assessment Toolbox." B. Photo Voice or Participatory Action Research, which offer the opportunity to involve even vulnerable groups in the research process (Böttger et al. 2022; Rackerseder et al. 2022).
How can a participatory research approach be transparently documented and made visible?
As described above, participatory research can be designed in a wide variety of ways, and the involvement of different stakeholders within a research process can vary in intensity from phase to phase. Therefore, it is particularly challenging to present the participatory approach transparently and comprehensibly within the available scope (e.g., in research proposals or publications). Currently, there are increasing efforts to explicitly and comprehensibly describe participatory approaches in publications or project proposals (Kühne et al. 2018; Böttger et al. 2022; Engler et al. 2021). Various instruments are available that describe the form and intensity of collaboration with stakeholders in relation to the different degrees of democratic understanding (Cornwall/Jewkes 1995; Arnstein 1996; Wright 2013). However, they do not seem to have sufficient openness and flexibility to transparently demonstrate the involvement and cooperation with the various stakeholders, which can vary in intensity during the project phases.
In order to make active participation in the entire research process more transparent, the participation network shown below can be used, for example (Fig. 1).
The participation network (P-Net) is applicable to all project phases of health services research and health system development (Table 1) (e.g., prospective or retrospective). It can help research teams and stakeholders clarify expectations during the project initiation phase and support project planning (e.g., resource design). It can also be used in project proposals to document the involvement of stakeholders, especially patients, in the research process and thus justify the costs allocated for network and collaboration management. It serves as a monitoring or reflection tool during the project's course or at its end.
Annex 1 contains a template for using the participation network. Annex 2 uses an imaginary health services research project to illustrate how stakeholders were involved at different moments. Both are available online via a link and QR code (see last page).
Conclusion and concluding remarks
This article advocates for participatory approaches. It makes three key statements: (1) Participatory research is more than patient participation; (2) active stakeholder involvement occurs not only because participation is a human right, but primarily to improve the relevance of the research question as well as the quality, usefulness, and sustainability of the research; and (3) the goal of participatory research approaches should be the best possible stakeholder involvement; this does not necessarily mean that participation must reach the highest level of intensity at every stage of the project.
The participation network presents a practical tool for demonstrating the involvement of various stakeholders throughout the project. It is based on the understanding that the involvement of individual stakeholders can vary in intensity from one project phase to the next. The participation network can be used for planning, reflecting on, and documenting stakeholder participation. Furthermore, the network promotes the visibility of participatory approaches.
Research funders could also promote participatory research by demanding greater transparency regarding stakeholder engagement, as they set the course for participatory research in their application forms, evaluation and decision criteria, and funding regulations. For example, the Innovation Committee could require applicants to transparently explain which stakeholders they intend to involve in the project, how intensively, and when (during the course of the project), or have already involved in the application process. Since active stakeholder engagement can improve study quality and sustainability, this could also be a criterion for evaluating applications.
If key stakeholders for transfer to standard care are ignored in the project, this could lead to rejection of the application unless a plausible reason is provided, or their inclusion could be made a requirement for optimization. The time and financial expenditures implying participatory approaches should be adequately reflected in the project budget. Participatory research is challenging but offers added value for all involved, i.e., researchers and stakeholders.