A novel method for observing proportional group awareness and consensus of items arising from list-generating questioning

Abstract

Background: Current healthcare professional consensus-generating methodologies work by forcing consensus, which risks corrupting original opinions and often fails to assess prior expert knowledge awareness. Experience gained with a novel method in a progressive life-long rare disease, X-linked hypophosphataemia, which addresses these risks is presented here.

Methods: Four case-studies are reported, presenting a novel methodology comprised of two survey rounds. Round 1 generated a list of items from healthcare professionals in response to an open-ended research question, alongside systematic literature reviews (when appropriate). These responses were thematically coded into mutually exclusive items then used to develop a structured questionnaire (Round 2), for which each participant identified their level of agreement using Likert scales; all responses were analyzed anonymously. Item awareness, observed agreement, consensus and prompted agreement were objectively measured.

Results: The free-text responses to Round 1 tested the awareness of specific items regarding establishing a European registry for X-linked Hypophosphatemia (XLH), limitations of empirical treatment for XLH (adults and paediatrics), and triggers for treatment of XLH in adults. The four cases showed different levels of item awareness, observed consensus and degrees of prompted agreement. All participants agreed or strongly agreed with statements based on the most frequent items listed in Round 1. Less frequent Round 1 items had various degrees of prompted agreement consensus; some did not reach the consensus threshold of >50% participant agreement.

Conclusions: Observed proportional group awareness and consensus is quicker than the Delphi technique and its variants, providing objective assessments of expert knowledge and standardized categorization of items regarding awareness, consensus and prompting. Further, it offers tailored management of each item in terms of educational need and further investigation.

Keywords:

• Novel consensus method
• X-linked hypophosphatemia
• prompted opinion
• knowledge awareness
• registries
• survey design

Transparency

Declaration of funding

The case studies were conducted alongside but independent to paid services Medialis, Ltd was contracted to perform by one of its clients and the case studies themselves remain wholly funded by Medialis Ltd. Medical writing and editorial support were funded by Medialis, Ltd.

Declaration of financial/other relationships

RJ is the founder of Medialis, Ltd. Medialis conducted the case studies observing proportional group awareness and consensus. All study managers (AD, JM and JT) who were experts for the case study 1, are employees of Medialis. All other participants who took part in case studies 2, 3 and 4 were paid for their time. Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contributions

RJ was completely responsible for the conception, design of the work, the acquisition, analysis, interpretation of data and has drafted the work and substantively revised it. RJ has also approved the submitted version and has agreed both to be personally accountable for the author’s own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature.

Acknowledgements

Celia J Parkyn, PhD and Alexander T Hardy, PhD provided medical writing and editorial support for manuscript preparation. CJP was funded by Medialis, Ltd, and ATH is currently employed by Medialis Ltd. Jack Lambshead and Saiful Islam, both previous employees of Medialis Ltd, worked with the data used in the early case studies.

Data availability statement

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.