Patient involvement in patient safety: what factors influence patient participation and engagement?

BACKGROUND: Patients can play an important role in improving patient safety by becoming actively involved in their health care. However, there is a paucity of empirical data on the extent to which patients take on such a role. In order to encourage patient participation in patient safety we first need to assess the full range of factors that may be implicated in such involvement. OBJECTIVE: To delineate factors that could affect the participation of the patient in quality and safety issues in their health care. METHOD: Literature review of patient involvement in health care, drawing from direct evidence (specifically from the safety context) and indirect evidence (extrapolated from treatment decision-making research and the wider patient involvement in health care literature); synthesis and conceptual framework developed, illustrating the known and putative factors that could affect the participation of the patient in safety issues in their health care. MAIN RESULTS: Five categories of factors emerged that could affect patient involvement in safety: patient-related (e.g. patients' demographic characteristics), illness-related (e.g. illness severity), health-care professional-related (e.g. health care professionals' knowledge and beliefs), health care setting-related (e.g. primary or secondary care), and task-related (e.g. whether the required patient safety behaviour challenges clinicians' clinical abilities). CONCLUSION: The potential for engaging patients in patient safety is considerable but further research is needed to examine the influences on patient involvement, the limits and the possible dangers. Patients can act as 'safety buffers' during their care but the responsibility for their safety must remain with the health care professionals.     

基于患者类型的医患沟通与患者就医感知价值关系研究

沟通性是患者就医感知价值的重要指标因素。文章通过在台州医院进行的实证研究,对医患沟通与患者就医感知价值的关系进行了深入分析,检验了医患沟通与患者就医感知价值间的正相关性。同时,以学历高低、有无不愉快经历为维度,对患者进行分类,检验了患者类型对两者关系的调节作用,探讨了学历高低、有无不愉快经历对患者就医感知价值评价的影响。     

Utilizing patient advocates in Parkinson’s disease: A proposed framework for patient engagement and the modern metrics that can determine its success

The wide application of patient engagement and its associated benefits has increased across government, academic and pharmaceutical research. However, neither an identified standard practice for the process of engagement, nor utilization of common metrics to assess associated outcomes, exists. Parkinson's Foundation developed a patient engagement framework and metrics to assess engagement within the academic research and drug development sectors. This approach was developed over the course of several years through assessing the literature, acquiring feedback from researchers and people with Parkinson's disease and adapting practices to be relevant and generalizable across patient engagement projects. This framework includes the: 1) creation of a scope of work, 2) establishment of guiding principles, 3) selection and training of participants, 4) co‐determination of project metrics, 5) execution of the project and 6) dissemination of project findings. Parkinson's Foundation has also worked with academic, government and pharmaceutical stakeholders to identify metrics that assess both the quality of patient engagement and outcomes associated with patient engagement on projects. By improving patient engagement project methodologies and metrics, global clinical trials can have access to evidence‐based patient engagement practices to more efficiently capture the needs of, and potentially benefit, the patient community.     

Optimizing patient involvement in quality improvement

Introduction

Patient and public involvement in healthcare planning, service development and health‐related research has received significant attention. However, evidence about the role of patient involvement in quality improvement work is more limited. We aimed to characterize patient involvement in three improvement projects and to identify strengths and weaknesses of contrasting approaches.

Methods

Three case study quality improvement projects were purposively sampled from a broader programme. We used an ethnographic approach involving 126 in‐depth interviews, 12 weeks of non‐participant observations and documentary analysis. Data analysis was based on the constant comparative method.

Results

The three projects differed in the ways they involved patients in their quality improvement work, including their rationales for including patients. We characterized three very different models of patient involvement, which were each influenced by project context. Patients played distinctive roles across the three projects, acting in some cases as intermediaries between the wider patient community and clinicians, and sometimes undertaking persuasive work to convince clinicians of the need for change. We identified specific strategies that can be used to help ensure that patient involvement works most effectively and that the enthusiasm of patients to make a difference is not dissipated.

Conclusion

Patient involvement in quality improvement work needs careful management to realize its full potential.     

病员转运车的原理与设计

本文介绍一种用于病房和手术室（台）间运送患者的设备，该转运车采用液压升降，传动平移及整体不对称结构。     

患者就医等候时间、就医便利性和就医感知价值关系研究

文章针对患者就医感知价值中的“看病难”问题,围绕患者就医等候时间、就医便利性和就医感知价值的关系展开理论研究,并结合台州医院的案例进行了实证检验。研究发现,在知名度较高的大型医院里,患者个人时间充裕程度与就医感知便利性无相关性,患者就医感知便利性与就医感知价值呈正相关性;患者个人就医时间充裕程度与就医感知价值无相关性,而患者特征对其时间充裕程度、就医感知便利性有一定影响。     

Health democracy in Europe: Cancer patient organization participation in health policy

Background

Patient organization participation in health policy decision making is an understudied area of inquiry. A handful of qualitative studies have suggested that the growing number of patient organizations in Europe and their increasing involvement in policy issues do not result in high political effectiveness. However, existing research is largely country‐specific.

Objective

To examine the degree and impact of cancer patient organization (CPO) participation in health policy decision making in EU‐28 and to identify their correlates.

Methods

A total of 1266 members of CPOs participated in this study, recruited from a diversity of sources. CPO participation in health policy was assessed with the Health Democracy Index, a previously developed instrument measuring the degree and impact of patient organization participation in various realms of health policy. Additional questions collected information about participants' and the CPO's characteristics. Data were gleaned in the form of an online self‐reported instrument.

Results

The highest degree of CPO participation was observed with respect to hospital boards, reforms in health policy and ethics committees for clinical trials. On the contrary, the lowest was discerned with regard to panels in other important health‐related organizations and in the Ministry of Health. The reverse pattern of results was observed concerning the Impact subscale. As regards the correlates of CPO participation, legislation bore the strongest association with the Degree subscale, while organizational factors emerged as the most important variables with regard to the Impact subscale.

Conclusions

Research findings indicate that a high degree of CPO participation does not necessarily ensure a high impact. Efforts to promote high and effective CPO participation should be geared towards the establishment of a health‐care law based on patient rights as well as to the formation of coalitions among CPOs and the provision of training to its members.     

The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay-led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient-professional relationship. A grounded-theory approach was adopted utilising focus groups, in-depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south-east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self-management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional-led self-management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long-term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.     

An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence‐based epistemic settings

Background

Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting.

Objective

To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development.

Methods

Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi‐structured interviews were conducted with actors involved in guideline development (n = 25).

Results

The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence‐based guideline development lose credibility as representatives for ‘true’ patients.

Discussion and conclusions

We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision‐making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.     

患者医疗服务价格感知机理与影响因素研究

文章聚焦于患者医疗服务价格感知的影响因素及其影响机理,采用理论与实证研究方法,探寻了把握患者医疗服务价格感知影响因素的具体方法,并根据研究结果提出了以患者类型及医疗服务项目类型为维度的改善患者医疗服务感知价值的管理策略。     

Approaches to reducing the most important patient errors in primary health‐care: patient and professional perspectives

We have previously reported a preliminary taxonomy of patient error. However, approaches to managing patients’ contribution to error have received little attention in the literature. This paper aims to assess how patients and primary care professionals perceive the relative importance of different patient errors as a threat to patient safety. It also attempts to suggest what these groups believe may be done to reduce the errors, and how. It addresses these aims through original research that extends the nominal group analysis used to generate the error taxonomy. Interviews were conducted with 11 purposively selected groups of patients and primary care professionals in Auckland, New Zealand, during late 2007. The total number of participants was 83, including 64 patients. Each group ranked the importance of possible patient errors identified through the nominal group exercise. Approaches to managing the most important errors were then discussed. There was considerable variation among the groups in the importance rankings of the errors. Our general inductive analysis of participants’ suggestions revealed the content of four inter‐related actions to manage patient error: Grow relationships; Enable patients and professionals to recognise and manage patient error; be Responsive to their shared capacity for change; and Motivate them to act together for patient safety. Cultivation of this GERM of safe care was suggested to benefit from ‘individualised community care’. In this approach, primary care professionals individualise, in community spaces, population health messages about patient safety events. This approach may help to reduce patient error and the tension between personal and population health‐care.     

Do patient experiences on priority aspects of health care predict their global rating of quality of care? A study in five patient groups

Background Patient‐given global ratings are frequently interpreted as summary measures of the patient perspective, with limited understanding of what these ratings summarize. Global ratings may be determined by patient experiences on priority aspects of care. Objectives (i) identify patient priorities regarding elements of care for breast cancer, hip‐ or knee surgery, cataract surgery, rheumatoid arthritis and diabetes, (ii) establish whether experiences regarding priorities are associated with patient‐given global ratings, and (iii) determine whether patient experiences regarding priorities are better predictors of global ratings than experiences concerning less important aspects of care. Setting and participants Data collected for the development of five consumer quality index surveys – disease‐specific questionnaires that capture patient experiences and priorities – were used. Results Priorities varied: breast cancer patients for example, prioritized rapid access to care and diagnostics, while diabetics favoured dignity and appropriate frequency of tests. Experiences regarding priorities were inconsistently related to global ratings of care. Regression analyses indicated that demographics explain 2.4–8.4% of the variance in global rating. Introducing patient experiences regarding priorities increased the variance explained to 21.1–35.1%; models with less important aspects of care explained 11.8–23.2%. Conclusions Some experiences regarding priorities are strongly related to the global rating while others are poorly related. Global ratings are marginally dependent on demographics, and experiences regarding priorities are somewhat better predictors of global rating than experiences regarding less important elements. As it remains to be fully determined what global ratings summarize, caution is warranted when using these ratings as summary measures.     

An empirically based conceptual framework for fostering meaningful patient engagement in research

Background

Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data.

Objective

To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective.

Methods

We conducted a qualitative secondary analysis of in‐depth interviews with 18 patient research partners from a research centre‐affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team.

Results

Participants’ experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team.

Conclusions

The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient‐researcher partnerships are led by researchers with little experience of engaging patients in research.     

Health care perceptions of the standardized patient

As the use of standardized patients (SPs) for education and assessment continues to grow, there becomes an ever-increasing cohort of patients in our clinical practices who have participated as SPs. The present study is part of a five-year longitudinal study to examine the impact of participation as a standardized patient on the perceptions of the standardized patient's own health care. SPs participating in the 1993, 1994 and 1995 Objective Structured Clinical Examinations (OSCE) for medical students at the end of their third year were requested to respond to mailed questionnaires before, immediately after and one year after their participation in the OSCE(s). Results indicated that, while overall the SP's perceptions of their interactions with their doctors were positive both before and after participation in the OSCE, as a group, their perceptions of their own health care was significantly worse at one year post-OSCE. Additionally, when divided according to SP experience, that is novice versus experienced SP, most of the items on which there were changes were mutually exclusive between the groups. If these significant negative changes are due to the SPs becoming more educated consumers of medical care, this can be seen as a positive outcome. However, if the changes are due to variables particular to the third-year medical student OSCEs themselves, debriefing of the SPs following their participation in the OSCE may be warranted.     

门诊医生工作站信息系统的设计

介绍了我院门诊医生工作站系统总体设计和各模块的功能。实现了患者信息的实时采集、处理、存储、传输等信息技术服务,提高了医院的管理水平。