Dataset Information

Involving Patients in Health Economics Research: "The PACTS Principles".

ABSTRACT: Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.

SUBMITTER: Hawton A

PROVIDER: S-EPMC7548133 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundDigital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications.ObjectivesThis article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research.MethodsThe DIGICIT project was developed in four steps: (1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants.ResultsOf the 25 applications received for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged.ConclusionHaving patients and citizens actively participating in this research constitutes the main methodological strength. They enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.

Project description:The One Health concept has inspired a rich vein of applied research and scholarly reflection over the past decade, yet with little influence from qualitative methodologists. With this overview, we describe the underpinning assumptions, purposes, and potential pitfalls of data collection techniques and methods of data analysis in key qualitative research methodologies. Our aim is to enhance One Health collaborations involving qualitative researchers, veterinary epidemiologists, and veterinary economists. There exist several distinct traditions of qualitative research, from which we draw selectively for illustrative purposes. Notwithstanding important distinctions, we emphasize commonalities and the potential for collaborative impact. The most important commonality is a shared focus on contextualizing human behavior and experience-culturally, economically, historically, and socially. We demonstrate that in-depth attention to context can assist veterinary economists and epidemiologists in drawing lessons from the implementation of policies and programs. In other words, qualitative researchers can assist One Health teams in distilling insights from "success stories," but also from adverse events and unintended consequences. As a result, qualitative researchers can contribute to One Health research and policy discussions by formulating more accurate and contextually-relevant parameters for future quantitative studies. When performed well, qualitative methodologies can help veterinary economists and epidemiologists to develop impactful research questions, to create more accurate and contextually-relevant parameters for quantitative studies, and to develop policy recommendations and interventions that are attuned to the political and socio-cultural context of their implementation. In sketching out the properties and features of influential methodologies, we underscore the value of working with seasoned qualitative researchers to incorporate questions about "what," "how," and "why" in mixed-methods research designs.

Dataset Information

Involving Patients in Health Economics Research: "The PACTS Principles".

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets