Participatory codesign of patient involvement in a Learning Health System: How can data‐driven care be patient‐driven care?

BackgroundA Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating ‘virtuous cycles’ between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being ‘data donors’ rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS.DesignTen participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs.ResultsThe contributors proposed three exemplar roles for patients in patient‐driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. ‘Epistemic injustice’ was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice).DiscussionPatient involvement in an LHS should be ‘with and by’ patients, not ‘about or for’. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a ‘virtuous alliance’ to achieve change.Patient or Public ContributionPublic contributors were active partners throughout, and co‐authored the paper.     

三七中人参三醇甙抗心律失常作用的研究

三七三醇甙(PTS)为三七的组分之一,能明显对抗乌头碱、BaCl_2和肾上腺素诱发的实验性心律失常。PTS减慢大鼠心率,延长P-R和Q-Tc间期;减慢离体豚鼠右房自发频率;使异丙肾上腺素加速右房自发频率的量效-曲线右移并抑制最大效应。PTS与胺碘达隆作用相似,使离体豚鼠乳头状肌细胞电位APD和ERP显著延长,2相复极化斜率降低。PTS对上述动作电位的影响呈剂量依赖性关系。     

粗毛淫羊藿甙的分离和结构

粗毛淫羊藿Epimedium acuminatum Franch为小檗科植物,又名尖叶淫羊藿,分布于四川、云南、贵州和湖北,在当地作淫羊藿药用。对粗毛淫羊藿的化学成分研究尚未见报道。本文报道从四川产粗毛淫羊藿的地上部分分离到五个化合物并进行了结构研究。     

滇黄芩中滇黄芩新素的结构研究

前已报道自四川产滇黄芩Scutellaria,amoena C.H.Wright中分离出五种黄酮成分和从云南产的中得到另八个黄酮类化合物。本文继续报道从云南产滇黄芩中得到的六个化合物和从四川产本种植物中得到一个黄酮化合物的结构鉴定。     

The relationship between depressive symptoms and immune status phenotypes in patients undergoing surgery for colorectal cancer

Studies suggest an association among depression, depressive symptoms and changes in the immune system. More specifically, research has demonstrated an association among depression, depressive symptoms and certain components (NK levels) of the immune system. Although there is evidence to indicate patients are psychologically affected by colorectal cancer and surgery postoperatively, the association between depressive symptoms and immune status changes during the immediate postoperative recovery phase is unknown. The purpose of the present study was to describe the relationship between depressive symptoms and immune status as measured by phenotype analysis among 63 patients undergoing colorectal cancer surgery. Fourteen percent of the patients continued to report depressive symptoms at 6 months postoperatively. Preoperatively and postoperatively, levels of NK cells among patients with more severe depressive symptoms were significantly lower than patients without or with minimal depressive symptoms. In addition, NK cell counts among the group with more severe depressive symptoms postoperatively were below the average NK cell count. Preoperative depressive symptoms significantly predicted NK and CD4/CD8 levels. These results suggest that preoperative depressive symptoms may have a prolonged effect on the patient's immune status and warrant early intervention.     

Preparing Cancer Patients and Family Caregivers for Lung Surgery: Development of a Multimedia Self-Management Intervention

The surgical treatment of lung malignancies often results in persistent symptoms, psychosocial distress, and decrements in quality of life (QOL) for cancer patients and their family caregivers (FCGs). The potential benefits of providing patients and FCGs with preparatory education that begins in the preoperative setting have been explored in multiple medical conditions, with positive impact observed on postoperative recovery, psychological distress, and QOL. However, few studies have explored the benefits of preparatory educational interventions to promote self-management in cancer surgery, including lung surgery. This paper describes the systematic approach used in the development of a multimedia self-management intervention to prepare cancer patients and their FCGs for lung surgery. Intervention development was informed by (1) contemporary published evidence on the impact of lung surgery on patients and FCG, (2) our previous research that explored QOL, symptoms, and caregiver burden after lung surgery, (3) the use of the chronic care self-management model (CCM) to guide intervention design, and (4) written comments and feedback from patients and FCGs that informed intervention development and refinement. Pilot-testing of the intervention is in process, and a future randomized trial will determine the efficacy of the intervention to improve patient, FCG, and system outcomes.     

Symptom management for cancer patients: a trial comparing two multimodal interventions

The results of a randomized controlled trial that tested the effects of eight-week, six-contact multidimensional interactive interventions for symptom management are presented. Four hundred and thirty-five cancer patients with solid tumors undergoing chemotherapy were randomized to receive either nurse-assisted symptom management (NASM) or automated telephone symptom management (ATSM). A prior trial established the effectiveness of NASM compared with conventional care. Seventeen symptoms commonly experienced by patients undergoing chemotherapy were rated on a scale from 0 to 10 and were evaluated at baseline, at each of the six intervention contacts, and postintervention observation at 10 weeks. Both groups achieved significant reduction in symptom severity over baseline, and there was no difference between groups on symptom severity at 10 weeks. Randomization accounted for possible reductions in severity due to response shifts. Severity of symptoms reported by patients at each of the six intervention contacts was measured using a Rasch model. Symptom pattern was different for lung and non-lung cancer patients, and they were analyzed separately. Longitudinal analyses revealed that lung cancer patients with greater symptom severity withdrew from later intervention contacts of the ATSM. The results suggest that both NASM and ATSM achieved a clinically significant reduction in symptom severity. The NASM may be more effective than ATSM in retaining lung cancer patients in the intervention. Further testing of ATSM supplemented by NASM for patients with severe symptoms is warranted.