Delphi consensus exercise 2018 - responding to genetic risk associated with close blood relative marriage in England

The data come from a structured Delphi consensus building
exercise involving policy-makers and practitioners in England.

Objectives

(1)
To explore professional and
lay stakeholder views on the design and delivery of services in the area of
consanguinity and genetic risk.

(2)
To identify principles upon
which there is sufficient consensus to warrant inclusion in a national guidance
document.

(3)
To highlight issues where
inter-professional differences of opinion necessitate further debate and
dialogue.

(4)
To identify areas where
further research and/or development work is needed to develop principles into
practical service approaches.The present exercise was conducted between March and July
2018 using three rounds of online consultation, followed by a face-to-face
consensus conference. In round 1, participants were asked to provide statements
that captured the key principles or elements of service design and delivery
that they considered to be important in relation to responding to the genetic
risk associated with customary consanguineous (close blood relative) marriage. An
online form provided participants with 13 prompting headings plus an open-ended
section and submissions remained open for two weeks. Responses were collated
and reviewed independently by two researchers to identify duplicate
and ambiguous statements, and to organise the statements into themes. Working
together, the two researchers next developed an agreed coherent set of
statements based around thematic areas. All unique statements
were taken forward to the second round. In round 2 participants were asked to rank each of the
statements on a seven point Likert scale ranging from “very strongly disagree”
to “very strongly agree”. Participants were given the opportunity to select “I
don’t know” for each statement and to skip entire sections if they felt
insufficiently well informed to rank the statements. Participants could also provide open-ended
comments on any of the statements. Round
2 remained open for two weeks. In Round 3, all participants from Round 2 were sent
individualised feedback with summary tables listing for each statement (i)
their own response, (ii) the weighted average, (iii) the percentage of all
participants who agreed and (iv) the percentage who responded “don’t know”.
Based on this information, they were invited to re-rank each of the statements.
Participants were reminded that they could stick to their original ranking if
they so wished. Open-ended feedback from Round 2 was reviewed and minor
amendments made to ensure statement clarity. Round 3 remained open for two
weeks. A half-day consensus conference (CC) was next
convened to discuss the findings. Data from the CC are not archived here.Demographic information was collected on respondents but is not included with the datasets in order to preserve anonymity.3 datasets in excel are archived here relating to Rounds 1, 2 and 3 separately.pdfs of the questionnaires used to generate the data are also archived here.

本数据集源自一项结构化的德尔菲共识构建练习，该练习涉及英格兰的政策制定者和实践者。其目标包括：（1）探究专业人士和公众利益相关者对于血亲和遗传风险领域服务设计和交付的看法；（2）识别足以纳入国家指导文件的共识原则；（3）指出需要进一步辩论和对话的跨专业意见分歧问题；（4）确定需要进一步研究和发展工作以将原则转化为实际服务方法的领域。该练习于2018年3月至7月间进行，包括三轮在线咨询和随后的面对面共识会议。在第一轮中，参与者被要求提供陈述，以捕捉他们认为对于应对与习俗性近亲结婚相关的遗传风险至关重要的服务设计和交付的关键原则或要素。在线表格为参与者提供了13个提示标题以及一个开放式部分，提交持续两周。两位研究人员独立汇总并审查了回应，以识别重复和模糊的陈述，并将陈述组织成主题。两位研究人员合作，基于主题领域制定了一组达成共识的连贯陈述。所有独特的陈述都被带入第二轮。在第二轮中，参与者被要求对每项陈述进行七点李克特量表排序，从“非常不同意”到“非常同意”。参与者有机会为每项陈述选择“我不知道”，并在他们认为信息不足无法排序的情况下跳过整个部分。参与者还可以对任何陈述提供开放式评论。第二轮持续两周。在第三轮中，所有第二轮的参与者都收到了个性化的反馈，其中包含每个陈述的总结表格，列出了（i）他们自己的回应，（ii）加权平均值，（iii）同意的参与者的百分比，（iv）回应“我不知道”的百分比。基于这些信息，他们被邀请重新排序每项陈述。参与者被提醒，如果他们愿意，可以坚持原来的排序。对第二轮的开放式反馈进行了审查，并对陈述进行了细微的修改以确保其清晰性。第三轮持续两周。随后召开了一场半天的共识会议（CC）以讨论发现。共识会议的数据未在此存档。对受访者的人口统计信息进行了收集，但出于保护匿名性的考虑，这些信息未包含在数据集中。与第一轮、第二轮和第三轮相关的三个Excel数据集在此存档。用于生成数据的问卷的PDF文件也在此存档。