What Is Participatory Health Research?

Wright, Michael T.; Springett, Jane; Kongats, Krystyna

doi:10.1007/978-3-319-92177-8_1

Cited by 45 publications

(47 citation statements)

References 22 publications

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“…Relationships built and the quality of the relationship also contributed to avoiding tensions allowing to rebalance power with the research process. Reciprocity in research practice 35 along with mutual respect and active learning 36 is a useful principle to consider fostering long-term involvement of PPI contributors and to enable building trust and relationship. Examples presented in this paper also highlights that not all involvement outcomes were the result of the researcher's efforts but a collective effort by both the researcher and the PPI contributors.…”

Section: Discussionmentioning

confidence: 99%

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

Dawson

Ruddock²,

Parmar³

et al. 2020

Preprint

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Background: Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers’ and PPI contributors’ personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people specifically in doctoral research.Methods: A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle. Results: Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience. Conclusions: This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

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Section: Discussionmentioning

confidence: 99%

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

Dawson

Ruddock²,

Parmar³

et al. 2020

Preprint

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“…In fact, patients’ activity is largely restricted to the completion of surveys and the entrance of data, often on a daily basis. 5 In this sense, participatory rhetoric often simply embellishes a practical and cost-efficient outsourcing of research work [18].…”

Section: Discussion: Participation In Data-intensive Medical Researchmentioning

confidence: 99%

“…The plurality of participatory terms used in the context of biomedical research exemplifies this confusion. Although there are certainly semantic overlaps between terms such as ‘patient involvement’, ‘patient engagement’, ‘patient participation’[4], ‘citizen science’ [16], ‘participant-centric initiatives’ [14], ‘patient-led research’ [17] or ‘participatory health research’ [18], the role these concepts assign to participants in research is neither clear nor homogeneous. From an ethical point of view, claims for participation show different levels of ambition and sophistication.…”

Section: Introductionmentioning

confidence: 99%

Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research

Beier

Schweda

Schicktanz

2019

BMC Med Inform Decis Mak

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Background Data-intensive research in medicine and healthcare such as health-related big data research (HBDR) implies that data from clinical routine, research and patient-reported data, but also non-medical social or demographic data, are aggregated and linked in order to optimize biomedical research. In this context, notions of patient participation and involvement are frequently invoked to legitimize this kind of research and improve its governance. The aim of this debate paper is to critically examine the specific use and ethical role of participatory concepts in the context of HBDR and data-intensive research in medicine and healthcare. Discussion We introduce basic conceptual distinctions for the understanding of participation by looking at relevant fields of application in politics, bioethics and medical research. Against this backdrop, we identify three paradigmatic participatory roles that patients/subjects are assigned within the field of HBDR: participants as providers of biomaterials and data, participants as administrators of their own research participation and participants as (co-)principal investigators. We further illustrate these roles by exemplary data-intensive research-initiatives. Our analysis of these initiatives and their respective participatory promises reveals specific ethical and practical shortcomings and challenges. Central problems affecting, amongst others, ethical and methodological research standards, as well as public trust in research, result from the negligence of essential political-ethical dimensions of genuine participation. Conclusions Based on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research.

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“…However, in the original protocol [7] and Ophelia manual [26] the participatory elements were not ascribed to any particular methodology. Participatory health research may involve different participatory methodologies within the spectra of action research [44,45]. Many of these are structured similarly to the iterative co-design process of the Ophelia approach [44].…”

Section: Idea Generation Co-designing and Testing The Interventionmentioning

confidence: 99%

Improving Organizational Health Literacy Responsiveness in Cardiac Rehabilitation Using A Co-Design Methodology: Results from The Heart Skills Study

Aaby

Simonsen

Ryom

et al. 2020

IJERPH

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For health services, improving organizational health literacy responsiveness is a promising approach to enhance health and counter health inequity. A number of frameworks and tools are available to help organizations boost their health literacy responsiveness. These include the Ophelia (OPtimising HEalth LIteracy and Access) approach centered on local needs assessments, co-design methodologies, and pragmatic intervention testing. Within a municipal cardiac rehabilitation (CR) setting, the Heart Skills Study aimed to: (1) Develop and test an organizational health literacy intervention using an extended version of the Ophelia approach, and (2) evaluate the organizational impact of the application of the Ophelia approach. We found the approach successful in producing feasible organizational quality improvement interventions that responded to local health literacy needs such as enhanced social support and individualized care. Furthermore, applying the Ophelia approach had a substantial organizational impact. The co-design process in the unit helped develop and integrate a new and holistic understanding of CR user needs and vulnerabilities based on health literacy. It also generated motivation and ownership among CR users, staff, and leaders, paving the way for sustainable future implementation. The findings can be used to inform the development and evaluation of sustainable co-designed health literacy initiatives in other settings.

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What Is Participatory Health Research?

Cited by 45 publications

References 22 publications

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research

Improving Organizational Health Literacy Responsiveness in Cardiac Rehabilitation Using A Co-Design Methodology: Results from The Heart Skills Study

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