Brown Ethan G, Schleimer Erica, Bledsoe Ian O, Rowles William, Miller Nicolette A, Sanders Stephan J, Rankin Katherine P, Ostrem Jill L, Tanner Caroline M, Bove Riley
University of California San Francisco Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, United States.
Department of Psychiatry, University of California San Francisco, San Francisco, CA, United States.
JMIR Hum Factors. 2022 May 6;9(2):e33967. doi: 10.2196/33967.
People with Parkinson disease (PD) have a variety of complex medical problems that require detailed review at each clinical encounter for appropriate management. Care of other complex conditions has benefited from digital health solutions that efficiently integrate disparate clinical information. Although various digital approaches have been developed for research and care in PD, no digital solution to personalize and improve communication in a clinical encounter is readily available.
We intend to improve the efficacy and efficiency of clinical encounters with people with PD through the development of a platform (PD-BRIDGE) with personalized clinical information from the electronic health record (EHR) and patient-reported outcome (PRO) data.
Using human-centered design (HCD) processes, we engaged clinician and patient stakeholders in developing PD-BRIDGE through three phases: an inspiration phase involving focus groups and discussions with people having PD, an ideation phase generating preliminary mock-ups for feedback, and an implementation phase testing the platform. To qualitatively evaluate the platform, movement disorders neurologists and people with PD were sent questionnaires asking about the technical validity, usability, and clinical relevance of PD-BRIDGE after their encounter.
The HCD process led to a platform with 4 modules. Among these, 3 modules that pulled data from the EHR include a longitudinal module showing motor ratings over time, a display module showing the most recently collected clinical rating scales, and another display module showing relevant laboratory values and diagnoses; the fourth module displays motor symptom fluctuation based on an at-home diary. In the implementation phase, PD-BRIDGE was used in 17 clinical encounters for patients cared for by 1 of 11 movement disorders neurologists. Most patients felt that PD-BRIDGE facilitated communication with their clinician (n=14, 83%) and helped them understand their disease trajectory (n=11, 65%) and their clinician's recommendations (n=11, 65%). Neurologists felt that PD-BRIDGE improved their ability to understand the patients' disease course (n=13, 75% of encounters), supported clinical care recommendations (n=15, 87%), and helped them communicate with their patients (n=14, 81%). In terms of improvements, neurologists noted that data in PD-BRIDGE were not exhaustive in 62% (n=11) of the encounters.
Integrating clinically relevant information from EHR and PRO data into a visually efficient platform (PD-BRIDGE) can facilitate clinical encounters with people with PD. Developing new modules with more disparate information could improve these complex encounters even further.
帕金森病(PD)患者存在多种复杂的医疗问题,每次临床诊疗时都需要进行详细评估以进行适当管理。其他复杂疾病的护理已受益于能有效整合不同临床信息的数字健康解决方案。尽管已开发出各种用于PD研究和护理的数字方法,但尚无现成的数字解决方案可在临床诊疗中实现个性化并改善沟通。
我们旨在通过开发一个平台(PD-BRIDGE)来提高与PD患者临床诊疗的效果和效率,该平台整合了电子健康记录(EHR)中的个性化临床信息和患者报告结局(PRO)数据。
我们采用以人为本的设计(HCD)流程,让临床医生和患者利益相关者参与PD-BRIDGE的开发,分为三个阶段:一个灵感阶段,包括焦点小组讨论以及与PD患者的交流;一个构思阶段,生成初步模型以获取反馈;一个实施阶段,对该平台进行测试。为了对该平台进行定性评估,在诊疗结束后,向运动障碍神经科医生和PD患者发送问卷,询问他们关于PD-BRIDGE的技术有效性、易用性和临床相关性。
HCD流程产生了一个包含4个模块的平台。其中,3个从EHR提取数据的模块包括:一个纵向模块,显示随时间变化的运动评分;一个展示模块,显示最近收集的临床评分量表;另一个展示模块,显示相关实验室检查值和诊断结果;第四个模块根据家庭日记显示运动症状波动情况。在实施阶段,11位运动障碍神经科医生中的1位所诊治的患者在17次临床诊疗中使用了PD-BRIDGE。大多数患者认为PD-BRIDGE有助于他们与临床医生沟通(n = 14,83%),帮助他们了解自己的疾病轨迹(n = 11,65%)以及临床医生的建议(n = 11,65%)。神经科医生认为PD-BRIDGE提高了他们了解患者疾病进程的能力(n = 13,占诊疗次数的75%),支持临床护理建议(n = 15,87%),并帮助他们与患者沟通(n = 14,81%)。在改进方面,神经科医生指出,在62%(n = 11)的诊疗中,PD-BRIDGE中的数据并不详尽。
将EHR和PRO数据中的临床相关信息整合到一个视觉上高效的平台(PD-BRIDGE)中,可以促进与PD患者的临床诊疗。开发包含更多不同信息的新模块可能会进一步改善这些复杂的诊疗过程。