(1)在血缘关系和遗传风险领域探索专业和非专业的利益相关者对服务设计和交付的看法。(2)确定有足够共识的原则,以确保将其纳入国家指导文件。(3)突出需要对话的意见分歧。(4)确定需要进一步研究或开发工作的领域,以告知实际的服务方法。
Delphi练习。三轮一次共识会议。
英国,国家,基于网络和面对面。
通过电子邮件分发列表和专业网络进行招聘。42名具有不同专业和人口背景的参与者参与了至少一轮演习。29人参加了第2轮和第3轮的陈述排名。在第1轮中生成了700多个单独的陈述,并合并为193个独特的陈述,以在第2轮中进行排名,其中60%达到80%或更高的一致性。在第3轮中,74%的陈述达成了80%或更高的共识。协商一致的会议讨论产生了最终148份商定声明,为政策制定者和医疗保健专业人员提供指导。达成了13项一般原则,超过90%的人同意其中12个。其余发言分为九个主题:国家一级的领导和协调,地方领导和协调,医疗保健和其他专业人员的培训和能力,基因服务,遗传素养,初级保健,推荐和协调,监测、评估和研究。还确定了后续步骤和工作组。
英国利益相关者之间就应制定该领域政策和实践对策的一般原则达成了高度一致:平等获取,文化能力,协调机构间工作,共同设计、赋权和嵌入式评估。强调需要强有力的国家领导,以确保更有效地分享知识,并在全国范围内促进更公平和一致的对策。
(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 on which there is sufficient
consensus to warrant inclusion in a national guidance document. (3) To highlight differences of opinion that necessitate dialogue. (4) To identify areas where further research or development work is needed to inform practical service approaches.
Delphi exercise. Three rounds and one
consensus conference.
UK, national, web-based and face-to-face.
Recruitment via email distribution lists and professional networks. 42 participants with varied professional and demographic backgrounds contributed to at least one round of the exercise. 29 people participated in statement ranking across both rounds 2 and 3.
Over 700 individual statements were generated in round 1 and consolidated into 193 unique statements for ranking in round 2, with 60% achieving 80% or higher agreement. In round 3, 74% of statements achieved 80% or higher agreement.
Consensus conference discussions resulted in a final set of 148 agreed statements, providing direction for both policy-makers and healthcare professionals. 13 general principles were agreed, with over 90% agreement on 12 of these. Remaining statements were organised into nine themes: national level leadership and coordination, local level leadership and coordination, training and competencies for healthcare and other professionals, genetic services, genetic literacy, primary care, referrals and coordination, monitoring and evaluation and research. Next steps and working groups were also identified.
There is high agreement among UK stakeholders on the general principles that should shape policy and practice responses in this area: equity of access, cultural competence, coordinated inter-agency working, co-design and empowerment and embedded evaluation. The need for strong national leadership to ensure more efficient sharing of knowledge and promotion of more equitable and consistent responses across the country is emphasised.