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

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.