Patient issues in health research and quality of care: an inventory and data synthesis

Aim The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care. Background Literature shows that patients are beginning to develop their own voice and agenda’s with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. Methods/search strategy Information was gathered from Western countries with similar economic, societal and health‐care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non‐scientific publications were also included. Results The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues. Conclusions Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks.     

The Path of Patient Loyalty and the Role of Doctor Reputation

Patient loyalty to doctors is relevant to medical services in which doctor–patient relationships are central and for which competition has increased in recent years. This study aims at understanding the process whereby patients develop loyalty to their doctor and doctor reputation has a moderating role. Based on a randomization of subjects, the study offers and tests an explanation chain representing key variables determining patient loyalty: patient commitment, trust and satisfaction, and doctor reputation. Primary data was collected using a structured questionnaire from a quota sample of regular patients in a large city in South America. The patients most committed to their doctor are more loyal to them. In turn, commitment is determined by patient trust, which is determined by patient satisfaction. Doctor reputation positively influences both patient trust and satisfaction. The explanation chain not only gives an account of how patient loyalty is formed; it also identifies a path health professionals can follow to secure patient loyalty.     

Patient perceptions of patient‐centred care: empirical test of a theoretical model

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.     

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.     

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.     

The effects of a mobile application for patient participation to improve patient safety

BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers'' participation and evaluate the effect of the mobile application on improving health consumers'' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants'' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers'' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation.     

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.     

Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group

ObjectivesLack of clarity on the definition of “patient engagement” has been highlighted as a barrier to fully implementing patient engagement in research. This study identified themes within existing definitions related to patient engagement and proposes a consensus definition of “patient engagement in research.”MethodsA systematic review was conducted to identify definitions of patient engagement and related terms in published literature (2006-2018). Definitions were extracted and qualitatively analyzed to identify themes and characteristics. A multistakeholder approach, including academia, industry, and patient representation, was taken at all stages. A proposed definition is offered based on a synthesis of the findings.ResultsOf 1821 abstracts identified and screened for eligibility, 317 were selected for full-text review. Of these, 169 articles met inclusion criteria, from which 244 distinct definitions were extracted for analysis. The most frequently defined terms were: “patient-centered” (30.5%), “patient engagement” (15.5%), and “patient participation” (13.4%). The majority of definitions were specific to the healthcare delivery setting (70.5%); 11.9% were specific to research. Among the definitions of “patient engagement,” the most common themes were “active process,” “patient involvement,” and “patient as participant.” In the research setting, the top themes were “patient as partner,” “patient involvement,” and “active process”; these did not appear in the top 3 themes of nonresearch definitions.ConclusionDistinct themes are associated with the term “patient engagement” and with engagement in the “research” setting. Based on an analysis of existing literature and review by patient, industry, and academic stakeholders, we propose a scalable consensus definition of “patient engagement in research.”     

A qualitative study of nurse‐patient communication and information provision during surgical pre‐admission clinics

BackgroundHealth‐care service users are often being described as ‘co‐producers’ with an active role in their care. However, there are challenges associated with this approach, including how standardization affects personalized care, and the ability of patients to retain high volumes of information.ObjectiveOur study explores patient and nursing perspectives of information provision in the pre‐admission element of an Enhanced Recovery After Surgery programme, an evidence‐based approach implemented to improve the quality of surgical care. Our analysis has been informed by an evidence‐based model developed by Grande et al Patient Educ Couns. 2014;95:281.Design/Setting and participantsThis was a qualitative study including observations of pre‐admission clinics and semi‐structured interviews across three surgical wards. Patients (n = 21) and registered nurses (n = 21) were purposively selected for interviews.ResultsPatients welcomed the opportunity for active involvement in their care. However, we also identified informational boundaries and how illness and treatment‐related anxieties were barriers to patient engagement with the information provided.DiscussionWe recommend that to support a patient‐centred and individualized approach to patient involvement the ‘information (giving) + activation’ element of Grande et al Patient Educ Couns. 2014;95:281 model be reconfigured to allow for ‘information (giving) + exploration +activation’.ConclusionNurses need to feel empowered to adopt strategies that allow for different informational needs, rather than adopting a one‐size‐fits‐all paternalistic approach.Patient contributionThis study focused on patient involvement and we give thanks to all the patients who took part in interviews and those who allowed us to observe their care.     

Public participation in the evaluation of health care

Of the many concepts and issues that have dominated debates in western health care systems in the last 20 or so years few can have had as much currency as that of “patient satisfaction”. The word “patient” is loaded and often deliberately substituted so that reference is made to the satisfaction of the “user”, “consumer”, “community”, “public” or “lay person”. All versions draw attention to a universal concern that modern health care is inherently prone to failure to meet the wants, needs, demands and expectations of the recipients of health care. “Patient satisfaction” as a policy issue is invariably viewed as a problem in need of urgent solutions. For some analysts it is the most urgent of all problems for health care systems the primary purpose of which is to satisfy users and potential users of health care.