Perry Laura M, Morken Victoria, Peipert John D, Yanez Betina, Garcia Sofia F, Barnard Cynthia, Hirschhorn Lisa R, Linder Jeffrey A, Jordan Neil, Ackermann Ronald T, Harris Alexandra, Kircher Sheetal, Mohindra Nisha, Aggarwal Vikram, Frazier Rebecca, Coughlin Ava, Bedjeti Katy, Weitzel Melissa, Nelson Eugene C, Elwyn Glyn, Van Citters Aricca D, O'Connor Mary, Cella David
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
Robert H Lurie Comprehensive Cancer Center, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.
JMIR Res Protoc. 2022 Sep 21;11(9):e38461. doi: 10.2196/38461.
Patient-reported outcomes-symptoms, treatment side effects, and health-related quality of life-are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients' symptom monitoring, shared decision-making, and effective use of the health care system.
The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes.
Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized.
The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective.
This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38461.
患者报告的结果——症状、治疗副作用和健康相关生活质量——在慢性病护理中是需要考虑的重要因素。健康信息技术越来越多地用于收集患者报告的结果并将结果整合到电子健康记录中，这为支持患者的症状监测、共同决策以及有效利用医疗保健系统提供了前所未有的机会。
本研究的目的是共同设计一个仪表板，该仪表板可在电子健康记录中显示患者报告的结果以及其他临床数据（如实验室检查、药物和预约信息），并进行一项纵向示范试验，以评估该仪表板是否与改善共同决策和疾病管理结果相关。
由研究调查人员、晚期癌症或慢性肾病患者、他们的护理伙伴及其临床医生组成的共同设计团队将合作开发该仪表板。研究人员将与诊所工作人员合作，在示范试验期间实施共同设计的仪表板以进行临床测试。示范试验的主要结果是共同决策的质量从基线到3个月随访是否有所提高。次要结果包括护理满意度、管理治疗和症状的自我效能感、健康相关生活质量以及昂贵且可能避免的医疗保健服务使用情况的纵向变化。在共同设计过程和示范试验期间的实施结果（即保真度、适当性、可接受性、可行性、覆盖面、采用率和可持续性）也将被收集和总结。
仪表板共同设计过程于2020年5月完成，示范试验的数据收集预计于2022年7月底完成。结果将针对每个研究目标至少在一篇手稿中进行传播。
本方案结合了利益相关者参与、医疗保健共同生产框架和健康信息技术，以开发一种临床可行的以患者为中心的护理模式。研究结果将为我们目前对如何最好地将患者报告的结果测量纳入临床工作流程以改善结果并减轻慢性病对患者和医疗保健系统负担的理解提供信息。
国际注册报告识别码（IRRID）：DERR1-10.2196/38461
