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Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research.

ABSTRACT: The case study design is particularly useful for implementation analysis of complex health care innovations in primary care that can be influenced by the context of dynamic environments. Case studies may be combined with participatory approaches where academics conduct joint research with nonacademic stakeholders, to foster translation of findings results into practice. The aim of this article is to clarify epistemological and methodological considerations of case studies with a participatory approach. It also aims to propose best practice recommendations when using this case study approach. We distinguish between the participatory case study with full co-construction and co-governance, and the case study with a participatory approach whereby stakeholders are consulted in certain phases of the research. We then compare the epistemological posture of 3 prominent case study methodologists, Yin, Stake, and Merriam, to present the epistemological posture of case studies with a participatory approach. The relevance, applications, and procedures of a case study with a participatory approach methodology are illustrated through a concrete example of a primary care research program (PriCARE). We propose 12 steps for designing and conducting a case study with a participatory approach that may help guide researchers in the implementation analysis of complex health care innovations in primary care.

SUBMITTER: Hudon C

PROVIDER: S-EPMC8575520 | biostudies-literature | 2021 Nov-Dec

REPOSITORIES: biostudies-literature

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Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research.

Hudon Catherine C Chouinard Maud-Christine MC Bisson Mathieu M Danish Alya A Karam Marlène M Girard Ariane A Bossé Pierre-Luc PL Lambert Mireille M

Annals of family medicine 20211101 6

The case study design is particularly useful for implementation analysis of complex health care innovations in primary care that can be influenced by the context of dynamic environments. Case studies may be combined with participatory approaches where academics conduct joint research with nonacademic stakeholders, to foster translation of findings results into practice. The aim of this article is to clarify epistemological and methodological considerations of case studies with a participatory ap ...[more]

PMID: 34750129

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Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:BackgroundThe evaluation of a continuously evolving eHealth tool in terms of improvement and implementation in daily practice is unclear. The CMyLife digital care platform provides patient-centered care by empowering patients with chronic myeloid leukemia, with a focus on making medication compliance insightful, discussable, and optimal, and achieving optimal control of the biomarker BCR-ABL1.ObjectiveThe aim of this study was to investigate to what extent the participatory action research approach is suitable for the improvement and scientific evaluation of eHealth innovations in daily clinical practice (measured by user experiences) combined with the promotion of patient empowerment.MethodsThe study used iterative cycles of planning, action, and reflection, whereby participants' experiences (patients, health care providers, the CMyLife team, and app suppliers) with the platform determined next actions. Co-design workshops were the foundation of this cyclic process. Moreover, patients filled in 2 sets of questionnaires for assessing experiences with CMyLife, the actual use of the platform, and the influence of the platform after 3 and at least 6 months. Data collected during the workshops were analyzed using content analysis, which is often used for making a practical guide to action. Descriptive statistics were used to characterize the study population in terms of information related to chronic myeloid leukemia and sociodemographics, and to describe experiences with the CMyLife digital care platform and the actual use of this platform.ResultsThe co-design workshops provided insights that contributed to the improvement, implementation, and evaluation of CMyLife and empowered patients with chronic myeloid leukemia (for example, simplification of language, and improvement of the user friendliness of functionalities). The results of the questionnaires indicated that (1) the platform improved information provision on chronic myeloid leukemia in 67% (33/49) of patients, (2) the use of the medication app improved medication compliance in 42% (16/38) of patients, (3) the use of the guideline app improved guideline adherence in 44% (11/25) of patients, and (4) the use of the platform caused patients to feel more empowered.ConclusionsA participatory action research approach is suited to scientifically evaluate digital care platforms in daily clinical practice in terms of improvement, implementation, and patient empowerment. Systematic iterative evaluation of users' needs and wishes is needed to keep care centered on patients and keep the innovation up-to-date and valuable for users.

Project description:BackgroundCommunity-Based Participatory Research (CBPR) has been used to address health disparities within several contexts by actively engaging communities. Though dialogues are recognized as a medium by which community members and other actors can make their voices heard through processes that support shared-decision making, power asymmetries often impede the achievement of this objective. Traditionally such relationship asymmetries exist between communities, health workers, and other professionals resulting in the exclusion of communities from decision making in participatory practices and dialogues. This study aimed to explore the experiences in the dialogues between different groups within communities, health workers and local government officials in a CBPR project on immunization in Nigeria. We adapted the framework by Elberse et al. (2011) to structure the possible exclusion mechanisms that could exist in dialogues between the three groups and we set up inclusion strategies to diminish the inequalities as much as possible.Methods and findingsThis is an exploratory and descriptive case study, using qualitative methods. Data was collected through observation and semi-structured interviews (SSI) with dialogue participants. All 24 participants in the multi-stakeholder dialogues were interviewed. Inclusion strategies involved creating enabling circumstances; influencing behaviour; and influencing use of language. Verbal and circumstantial strategies were of limited value in reducing exclusion. Behavioural inclusion strategies created more awareness of the importance of inclusion; and enabled different community stakeholders to direct their influences towards achieving the collective goals of the collaboration. An important learning is that if evidence is used in the dialogues, even when exclusion of certain individuals occurs, the outcomes could still favour them. A key issue is the difference between participation and representation and the need for more efficient ways of carrying out such interactive processes to ensure that the participation of the vulnerable groups is not merely symbolic. The study makes a case for the use of 'boundary spanners' in this dynamic-these are 'elite' individuals (or community champions) who can be a voice for the minorities and who could have the opportunity to influence decision making.ConclusionCBPR can enable local governments to develop effective partnerships with health workers and communities to achieve health-related goals even in the presence of asymmetries in relationships. Inclusion strategies in dialogues can improve participation and enable shared decision making, however exclusion of vulnerable groups may still occur. Intra-community dynamics and socio-cultural contexts can drive exclusion and less privileged community members require proper representation to enable their issues to be captured effectively.

Project description:BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users.MethodsIn practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods.ResultsThis paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations.ConclusionECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.

Project description:Breast cancer (BC) has overtaken lung cancer as the most common cancer in the world and the projected incidence rates show a further increase. Early detection through population screening remains the cornerstone of BC control, but a progressive change from early diagnosis only-based to a personalized preventive and risk-reducing approach is widely debated. Risk-stratification models, which also include personal lifestyle risk factors, are under evaluation, although the documentation burden to gather population-based data is relevant and traditional data collection methods show some limitations. This paper provides the preliminary results from the analysis of clinical data provided by radiologists and lifestyle data collected using self-administered questionnaires from 5601 post-menopausal women. The weight of the combinations of women's personal features and lifestyle habits on the BC risk were estimated by combining a model-driven and a data-driven approach to analysis. The weight of each factor on cancer occurrence was assessed using a logistic model. Additionally, communities of women sharing common features were identified and combined in risk profiles using social network analysis techniques. Our results suggest that preventive programs focused on increasing physical activity should be widely promoted, in particular among the oldest women. Additionally, current findings suggest that pregnancy, breast-feeding, salt limitation, and oral contraception use could have different effects on cancer risk, based on the overall woman's risk profile. To overcome the limitations of our data, this work also introduces a mobile health tool, the Dress-PINK, designed to collect real patients' data in an innovative way for improving women's response rate, data accuracy, and completeness as well as the timeliness of data availability. Finally, the tool provides tailored prevention messages to promote critical consciousness, critical thinking, and increased health literacy among the general population.

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Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research.

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Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research.

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