Long COVID Citizen Scientists – Developing a needs-based research agenda by persons affected by Long COVID

Ziegler, Sarah; Raineri, Alessia; Nittas, Vasileios; Rangelov, Natalie; Vollrath, Fabian; Britt, Chantal; Puhan, Milo A.

doi:10.1101/2021.12.08.21267181

Cited by 1 publication

(1 citation statement)

References 13 publications

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“…We chose a focus group approach, which has been shown to have several advantages over interviews: New ideas that remain hidden or unrecognised in individual interviews can be stimulated by spontaneous utterances in the group, and, in larger groups, the gap between scientists and non-scientists might be smoothed out, fostering participation (Schulz, Mack, & Renn, 2012). Other studies used family workshops (Grabowski et al, 2022), observation and discussion (Scheffelaar et al, 2020) or online meetings with small group sessions (Ziegler et al, 2022) to identify stakeholder needs.…”

Section: Discussionmentioning

confidence: 99%

Identifying gaps in health literacy research through parental participation

Grepmeier,

Pöhnl,

von Sommoggy

et al. 2023

Preprint

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Introduction: Involving patients and the public in design, conduct and dissemination of research has gained momentum in recent years. While methods to prioritize research on treatment uncertainties have been successfully applied for various disease entities, patient and public involvement has not been prominent to prioritize research in health literacy (HL). This study aimed to set up a participatory process on identifying HL research gaps from a parental perspective in two use cases: early childhood allergy prevention (ECAP) and COVID-19 in children with allergies (COVICAL). Methods: To prepare and empower parents, we developed and provided preparatory webinars, introductory materials, i.e., factsheets and a brochure, and a scientific podcast with seven episodes. Recruitment was carried out by our cooperation partner German Allergy and Asthma Association e. V., via local day care centres and paediatricians as well as via snowballing. The identification of research gaps took place within five workshops with n= 55 participants, four face-to-face-workshops across Germany, one online workshop. Research ideas and needs were reviewed for overlap and redundancy and compared to the existing research state of the art. Results: More than 150 initial research ideas and needs were collected which after review were reduced to a total of 37 ECAP, 33 COVICAL and 7 generic HL research questions. These were particularly related to the ease of finding and presenting good quality health information, information environment, health communication, professional education, and HL testing. Conclusions: Involving parents in the formulation of HL research priorities proved to be challenging but feasible. Research ideas often reflect wishes directed at health professionals and the health system, i.e., organizational, and systemic HL. An e Delphi process will follow to elicit the TOP 10 research priorities in each use case. This project will help to plan patient/parent centred HL research in ECAP and COVICAL. Keywords: participatory health research; health literacy research; research gaps; patient and public involvement; co-researcher; early childhood allergy prevention; COVID-19 in children with allergies

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Section: Discussionmentioning

confidence: 99%