Ranade-Kharkar Pallavi, Weir Charlene, Norlin Chuck, Collins Sarah A, Scarton Lou Ann, Baker Gina B, Borbolla Damian, Taliercio Vanina, Del Fiol Guilherme
Intermountain Healthcare, Murray, UT, USA.
Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
J Am Med Inform Assoc. 2017 Sep 1;24(5):933-941. doi: 10.1093/jamia/ocx023.
Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN).
We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes.
The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes.
Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions.
识别并描述医生、护理协调员以及家庭在为有特殊医疗需求的患有复杂疾病的儿童和青少年（CYSHCN）协调护理方面的信息需求及相关目标。
我们采用关键决策方法技术，对CYSHCN的医生、护理协调员和家长进行了19次深入访谈。我们使用系统的内容分析方法，分析访谈中作为问题提出的信息需求，并将这些问题分类为信息需求目标类型和子类型。
关键决策方法访谈平均每次产生80项信息需求。我们将它们分为6种信息需求目标类型：（1）情况理解，（2）护理网络，（3）规划，（4）跟踪/监测，（5）在医疗系统中导航，以及（6）学习，还有32个子类型。
照顾CYSHCN会产生大量信息需求，这需要医生、护理协调员、家长和其他各类人员付出巨大努力。CYSHCN往往患有慢性病，并面临发育挑战，这转化为对时间、精力和资源的强烈需求。为CYCHSN协调护理涉及多个信息系统、专门资源和复杂的决策。目前健康信息技术提供的解决方案在提供支持以满足执行复杂护理协调任务的信息需求方面存在不足。我们的研究结果为通过多方面且完全集成的信息学解决方案改善护理协调提供了重大机遇。
