Patient and Public Involvement in research: A journey to co-production

The public and patients can be powerful sensors for shaping and powering healthcare research. They are joining research teams as investigators and collaborators to co-produce evidence for the practical use of interventions in clinical practice. While clinicians and researchers are encouraged by funders and policymakers to involve the public and patients as partners in research, knowledge on what involvement consists of is limited, and the continuum between consultation, collaboration and co-production are not clearly defined. In this article, we explore Patient and Public Involvement (PPI) and introduce greater involvement through research co-production. Co-production describes ways that research partnership can work through public and patient involvement and we outline the similarities of co-production to “The Commons”, a strategy utilized by economists to increase effective use of resources. We share examples of how public and patient involvement have used co-production, to demonstrate financial and health benefits. We then outline practical challenges at system, social and cultural levels and consider how others have worked to resolve them.     

Patient reported outcomes and patient empowerment in clinical genetics services

Evaluation of clinical genetics services (CGS), including genetic counseling and genetic testing, has been problematic. Patient mortality and morbidity are unlikely to be directly improved by interventions offered in CGS. Patient‐reported outcomes (PROs) are not routinely measured in CGS evaluation, but this may change as patient‐reported outcome measures (PROMs) become a key part of how healthcare services are managed and funded across the world. However, there is no clear consensus about which PROMs are most useful for CGS evaluation. This review summarizes the published research on how PROs from CGS have been measured and how patients may benefit from using those services, with a focus on patient empowerment. Many patient benefits (PROs) identified repeatedly in the research literature can be re‐interpreted within a patient empowerment framework. Other important PROs identified include family functioning, social functioning, altruism, sense of purpose, enabling development of future research and treatment/participating in research. Well‐validated measures are available to capture (dimensions of) patient empowerment. Although generic measures of family functioning are available, suitable measures capturing social functioning, development of future treatments, and altruism were not identified in this review. Patient empowerment provides one useful approach to measuring PROs from CGS.     

Mobile-health: A review of current state in 2015

Health telematics is a growing up issue that is becoming a major improvement on patient lives, especially in elderly, disabled, and chronically ill. In recent years, information and communication technologies improvements, along with mobile Internet, offering anywhere and anytime connectivity, play a key role on modern healthcare solutions. In this context, mobile health (m-Health) delivers healthcare services, overcoming geographical, temporal, and even organizational barriers. M-Health solutions address emerging problems on health services, including, the increasing number of chronic diseases related to lifestyle, high costs of existing national health services, the need to empower patients and families to self-care and handle their own healthcare, and the need to provide direct access to health services, regardless of time and place. Then, this paper presents a comprehensive review of the state of the art on m-Health services and applications. It surveys the most significant research work and presents a deep analysis of the top and novel m-Health services and applications proposed by industry. A discussion considering the European Union and United States approaches addressing the m-Health paradigm and directives already published is also considered. Open and challenging issues on emerging m-Health solutions are proposed for further works.     

An efficient architecture to support digital pathology in standard medical imaging repositories

In the past decade, digital pathology and whole-slide imaging (WSI) have been gaining momentum with the proliferation of digital scanners from different manufacturers. The literature reports significant advantages associated with the adoption of digital images in pathology, namely, improvements in diagnostic accuracy and better support for telepathology. Moreover, it also offers new clinical and research applications. However, numerous barriers have been slowing the adoption of WSI, among which the most important are performance issues associated with storage and distribution of huge volumes of data, and lack of interoperability with other hospital information systems, most notably Picture Archive and Communications Systems (PACS) based on the DICOM standard.This article proposes an architecture of a Web Pathology PACS fully compliant with DICOM standard communications and data formats. The solution includes a PACS Archive responsible for storing whole-slide imaging data in DICOM WSI format and offers a communication interface based on the most recent DICOM Web services. The second component is a zero-footprint viewer that runs in any web-browser. It consumes data using the PACS archive standard web services. Moreover, it features a tiling engine especially suited to deal with the WSI image pyramids. These components were designed with special focus on efficiency and usability. The performance of our system was assessed through a comparative analysis of the state-of-the-art solutions. The results demonstrate that it is possible to have a very competitive solution based on standard workflows.     

The impact of computerised physician order entry systems on pathology services: a systematic review

PURPOSE: Computerised physician order entry (CPOE) systems hold the promise of significant improvements to health care delivery and patient care. The implementation of such systems is costly and complex. The purpose of this paper is to review current evidence of the impact of CPOE on hospital pathology services. METHODS: This paper presents a review of the literature (1990-August 2004) about CPOE systems and identifies indicators for measuring the impact of CPOE on pathology services. RESULTS: Nineteen studies which contained some form of 'control' group, were identified. They featured a variety of designs including randomised controlled trials, quasi-experimental and before and after studies. We categorised these into three groups: studies comparing pathology CPOE systems (with no decision support) to paper systems; pathology CPOE systems (with decision support) to paper systems; and pathology CPOE systems with specific pathology features compared to systems without those features. We identified 10 areas of impact assessment and 39 indicators used to measure the impact of CPOE on different stages of the pathology test ordering and reporting process. CONCLUSION: We conclude that while some data suggest that CPOE systems are beneficial for clinical and laboratory work processes, these data are limited, and further research is needed. Few data are available regarding the impact of CPOE on patient outcomes.     

Clinical engineering in Brazil: current status

It is estimated that 20-40% of all existing healthcare equipment in Brazil is not working because of a lack of service, parts, or supplies, or because it has not been installed. Traditionally, equipment goes completely unattended until a complete failure occurs. Then, it sits idle, paralyzing those services provided by it, until its owner gathers enough money to afford the extravagant repairs provided by manufacturers and their representatives, with little continuing assurance of quality and efficacy. During the last 10 years, a few medical institutions have started to establish their own clinical engineering (CE) teams. Besides providing significant savings, these pioneers are contributing to the improvement of the process of managing the introduction of technology into healthcare. Now, about 10% of all hospitals with more than 150 beds have their own CE departments. Three years ago, the Brazilian Association of Hospital Engineering and Maintenance was created to promote the recognition of CE as a new profession. The main difficulties that inhibit the faster and wider adoption of the self-reliant approach are analyzed and some possible solutions are discussed.     

The lure of 'patient choice'.

As primary care practitioners are the health professionals closest to patients' everyday lives, they are most likely to experience the impact of policies that support the patient choice agenda. The government's approach to increasing patient choice has been subject to criticism by those sceptical of its politics and by those concerned with its influence on health providers and some patient groups. A perspective missing from the debate is one informed by research on the psychology of choice. Some psychologists have argued that a seemingly inbuilt preference for choice can adversely affect the decision-making process and that presenting healthcare decisions as choices may result in less reasoned decision making. It is important that GPs encourage patients to make reasoned healthcare decisions that are informed by an evaluation of the options rather than by a simple preference for choice. Patients are likely to be less satisfied with, and experience more regret about, choices made without reasoning.     

The influence of gender on the doctor–patient interaction

Objective

This paper discusses the research focused on gender issues in healthcare communication.

Methods

The majority of papers discussed here are based on a research study in which 509 new adult patients were prospectively and randomly assigned to family practice or internal medicine clinics at a university medical center and followed for one year of care.

Results

There are significant differences in the practice style behaviors of female and male doctors. Female doctors provide more preventive services and psychosocial counseling; male doctors spend more time on technical practice behaviors, such as medical history taking and physical examination. The patients of female doctors are more satisfied, even after adjusting for patient characteristics and physician practice style.Female patients make more medical visits and have higher total annual medical charges; their visits include more preventive services, less physical examination, and fewer discussions about tobacco, alcohol and other substance abuse (controlling for health status and sociodemographic variables).The examination of gender concordant and discordant doctor–patient dyads provides a unique strategy for assessing the effect of gender on what takes place during the medical visit.

Conclusion

Doctor and patient gender can impact the physician–patient interaction and its outcomes.

Practice implications

The development of appropriate strategies for the implementation of knowledge about physician and patient gender differences will be crucial for the delivery of high quality gender-sensitive healthcare.     

Managing immune diseases in the smartphone era: how have apps impacted disease management and their future?

Immunology, similar to other areas of clinical science, is a data-rich discipline that involves a great deal of interaction between healthcare professionals and their patients. The focus of this editorial is to review the challenges and opportunities for mobile healthcare applications within immunology. It is clear that further research is required to fully maximize the potential of mobile apps (e.g., regulations and guidelines, electronic health). However, it is equally clear that mobile healthcare applications have had a positive impact on patient outcomes (better response rates, more efficient usage of time and more accurate diagnosis). Overall, healthcare applications have a fundamental role to play in the future management of diseases as they will help to ensure that we deliver more effective patient care.     

Satisfaction and adherence of patients with amputations to physiotherapy service at public hospitals in KwaZulu-Natal,South Africa

Background

Individuals who have undergone a lower limb amputation require comprehensive rehabilitation from the multidisciplinary team to ensure optimal treatment outcomes and social integration. Physiotherapists play a pivotal role within the multidisciplinary team and offer patients physical and psychosocial rehabilitative care. Determining patients'' satisfaction levels and exploring factors affecting adherence to physiotherapy interventions can inform practice and improve service delivery of rehabilitation within resource poor settings such as South Africa.

Objectives

To determine the level of satisfaction with physiotherapy services rendered to acute and sub-acute in-patients with lower limb amputations and to explore factors affecting adherence to physiotherapy intervention.

Methods

A prospective survey of 35 patients with lower limb amputations from four public hospitals in South Africa was undertaken. A modified version of the Hampstead rehabilitation centre patient satisfaction questionnaire was utilised.

Results

Majority of participants were satisfied with the physiotherapy services whilst a few reported dissatisfaction. Three themes emerged whilst exploring the patients'' experience relating to adherence to physiotherapy programmes. Themes included service delivery, patient-therapist interaction and participation barriers and facilitators.

Conclusion

Recommendations aimed to improve quality of care and healthcare outcomes thereby enhancing the participants'' adherence to the physiotherapy programme.     

Pathologists should probably forget about kappa. Percent agreement,diagnostic specificity and related metrics provide more clinically applicable measures of interobserver variability

Kappa statistics have been widely used in the pathology literature to compare interobserver diagnostic variability (IOV) among different pathologists but there has been limited discussion about the clinical significance of kappa scores. Five representative and recent pathology papers were queried using clinically relevant specific questions to learn how IOV was evaluated and how the clinical applicability of results was interpreted. The papers supported our anecdotal impression that pathologists usually assess IOV using Cohen's or Fleiss' kappa statistics and interpret the results using some variation of the scale proposed by Landis and Koch. The papers did not cite or propose specific guidelines to comment on the clinical applicability of results. The solutions proposed to decrease IOV included the development of better diagnostic criteria and additional educational efforts, but the possibility that the entities themselves represented a continuum of morphologic findings rather than distinct diagnostic categories was not considered in any of the studies.A dataset from a previous study of IOV reported by Thunnissen et al. was recalculated to estimate percent agreement among 19 international lung pathologists for the diagnosis of 74 challenging lung neuroendocrine neoplasms. Kappa scores and diagnostic sensitivity, specificity, positive and negative predictive values were calculated using the majority consensus diagnosis for each case as the gold reference diagnosis for that case. Diagnostic specificity estimates among multiple pathologists were > 90%, although kappa scores were considerably more variable. We explain why kappa scores are of limited clinical applicability in pathology and propose the use of positive and negative percent agreement and diagnostic specificity against a gold reference diagnosis to evaluate IOV among two and multiple raters, respectively.     

Adaptive semi-supervised recursive tree partitioning: The ART towards large scale patient indexing in personalized healthcare

With the rapid development of information technologies, tremendous amount of data became readily available in various application domains. This big data era presents challenges to many conventional data analytics research directions including data capture, storage, search, sharing, analysis, and visualization. It is no surprise to see that the success of next-generation healthcare systems heavily relies on the effective utilization of gigantic amounts of medical data. The ability of analyzing big data in modern healthcare systems plays a vital role in the improvement of the quality of care delivery.Specifically, patient similarity evaluation aims at estimating the clinical affinity and diagnostic proximity of patients. As one of the successful data driven techniques adopted in healthcare systems, patient similarity evaluation plays a fundamental role in many healthcare research areas such as prognosis, risk assessment, and comparative effectiveness analysis. However, existing algorithms for patient similarity evaluation are inefficient in handling massive patient data. In this paper, we propose an Adaptive Semi-Supervised Recursive Tree Partitioning (ART) framework for large scale patient indexing such that the patients with similar clinical or diagnostic patterns can be correctly and efficiently retrieved. The framework is designed for semi-supervised settings since it is crucial to leverage experts’ supervision knowledge in medical scenario, which are fairly limited compared to the available data. Starting from the proposed ART framework, we will discuss several specific instantiations and validate them on both benchmark and real world healthcare data. Our results show that with the ART framework, the patients can be efficiently and effectively indexed in the sense that (1) similarity patients can be retrieved in a very short time; (2) the retrieval performance can beat the state-of-the art indexing methods.     

Histopathology reporting: lessons from clinical practice

There are significant differences between histopathological and clinical practice. Implementing some clinical management principles could help optimise the use of limited histopathology resources. Like clinicians, pathologists should adopt a more personalised approach based on the clinical context of each case. Specimens could be categorised as diagnostic, prognostic or therapeutic; extensive work-up may be unnecessary for therapeutic specimens. Awareness of how histopathology data is used to guide patient management can enable focussing of resources towards collection of clinically useful data. Clinical decisions regarding investigations and treatment often involve a cost-benefit analysis. Pathologists should similarly consider whether novel technologies represent “value for money”. Clinicians generally categorise cancer patients into prognostic risk groups. It may not be cost-effective to spend histopathology resources to accurately collect additional adverse prognostic data in a patient who is already in the highest risk group. Cancer outcomes have been improved by a specialist model of clinical care. Greater subspecialisation of histopathology services could lead to more effective use of limited manpower resources. Trainees and health care systems could benefit if the former were given more responsibility earlier in their career. Pathologists should liaise closely with their clinical colleagues, particularly when dealing with complex cases. In-person attendance at multidisciplinary team meetings could help pathologists communicate more effectively with the clinical team.     

Pathologists' workload and patient safety

Pathologists play a pivotal role in providing good laboratory services. They are involved in the interpretation of laboratory and pathology results, and through their role as administrators, which include medical oversight, ensure proper functioning of the laboratory. An overworked pathologist can result in deficiencies in any of these roles and cause dysfunction of the laboratory and laboratory errors. Laboratory derived information comprises 70% of medical information necessary for patient management. Therefore, any laboratory error has a potential to adversely affect patient care and thus patient safety.     

Occupational Therapists’ Views on Using a Virtual Reality Interior Design Application Within the Pre-Discharge Home Visit Process

BackgroundA key role of Occupational Therapists (OTs) is to carry out pre-discharge home visits (PHV) and propose appropriate adaptations to the home environment in order to enable patients to function independently after hospital discharge. However, research shows that more than 50% of specialist equipment installed as part of home adaptations is not used by patients. A key reason for this is that decisions about home adaptations are often made without adequate collaboration and consultation with the patient. Consequently, there is an urgent need to seek out new and innovative uses of technology to facilitate patient/practitioner collaboration, engagement, and shared decision making in the PHV process. Virtual reality interior design applications (VRIDAs) primarily allow users to simulate the home environment and visualize changes prior to implementing them. Customized VRIDAs, which also model specialist occupational therapy equipment, could become a valuable tool to facilitate improved patient/practitioner collaboration, if developed effectively and integrated into the PHV process.ObjectiveThe intent of the study was to explore the perceptions of OTs with regard to using VRIDAs as an assistive tool within the PHV process.MethodsTask-oriented interactive usability sessions, utilizing the think-aloud protocol and subsequent semi-structured interviews were carried out with seven OTs who possessed significant experience across a range of clinical settings. Template analysis was carried out on the think-aloud and interview data. Analysis was both inductive and driven by theory, centering around the parameters that impact upon the acceptance, adoption, and use of this technology in practice as indicated by the Technology Acceptance Model (TAM).ResultsOTs’ perceptions were identified relating to three core themes: (1) perceived usefulness (PU), (2) perceived ease of use (PEoU), and (3) actual use (AU). Regarding PU, OTs believed VRIDAs had promising potential to increase understanding, enrich communication and patient involvement, and improve patient/practitioner shared understanding. However, it was unlikely that VRIDAs would be suitable for use with cognitively impaired patients. For PEoU, all OTs were able to use the software and complete the tasks successfully; however, participants noted numerous specialist equipment items that could be added to the furniture library. AU perceptions were positive regarding use of the application across a range of clinical settings including children/young adults, long-term conditions, neurology, older adults, and social services. However, some “fine tuning” may be necessary if the application is to be optimally used in practice.ConclusionsParticipants perceived the use of VRIDAs in practice would enhance levels of patient/practitioner collaboration and provide a much needed mechanism via which patients are empowered to become more equal partners in decisions made about their care. Further research is needed to explore patient perceptions of VRIDAs, to make necessary customizations accordingly, and to explore deployment of the application in a collaborative patient/practitioner-based context.     

Do service innovations influence the adoption of electronic health records in long-term care organizations? Results from the U.S. National Survey of Residential Care Facilities

ObjectiveHealthcare organizations including residential care facilities (RCFs) are diversifying their services to meet market demands. Service innovations have been linked to the changes in the way that healthcare organizations organize their work. The objective of this study is to explore the relationship between organizational service innovations and Electronic Health Record (EHR) adoption in the RCFs.MethodsWe used the data from the 2010 National Survey of Residential Care Facilities conducted by the Centers for Disease Control and Prevention. The outcome was whether an RCF adopted EHR or not, and the predictors were the organizational service innovations including provision of skilled nursing care and medication review. We also added facility characteristics as control variables. Weighted multivariate logistic regressions were used to estimate the relationship between service innovation factors and EHR adoption in the RCFs.ResultsIn 2010, about 17.4% of the RCFs were estimated to use EHR. Multivariate analysis showed that RCFs employing service innovations were more likely to adopt EHR. The residential care facilities that provide skilled nursing services to their residents are more likely (OR: 1.42; 95% CI: 1.09–1.87) to adopt EHR. Similarly, RCFs with a provision of medication review were also more likely to adopt EHR (OR: 1.40; 95% CI: 1.00–1.95). Among the control variables, facility size, chain affiliation, ownership type, and Medicaid certification were significantly associated with EHR adoption.ConclusionsOur findings suggest that service innovations may drive EHR adoption in the RCFs in the United States. This can be viewed as a strategic attempt by RCFs to engage in a new business arrangement with hospitals and other health care organizations, where quality of care and interoperability of patients’ records might play a vital role under the current healthcare reform. Future research could examine the relationship between service innovations and use of different EHR functionality in RCFs.     

Tablet computers in support of rural and frontier clinical practice

PurposeHealthcare organizations are increasingly faced with an environment in which they must implement health information systems to achieve higher standards for efficiency and quality of care while at the same time being asked to provide needed services with fewer resources. This is particularly challenging for rural health systems where access to resources is often more limited. This study investigates the potential value of iPad tablets for enhancing health services delivery by primary care physicians in rural Nevada.MethodsFive physicians from rural Nevada were selected to receive iPads and funding for apps that would enhance their medical practices. Following a year of use, data was gathered on each physician's actual use and perceived value of the iPads. A case study approach was taken using both an online survey and semi-structured phone interviews to collect case data.ResultsUse and perceived usefulness of the iPad was mixed but generally positive with some physicians utilizing it much more than others. The iPads were primarily used by the physicians to access medical information through online resources (e.g. Epocrates and UpToDate) for reference and diagnostic purposes, although they were also used for some interaction with patients. All felt that resources available through the iPad were limited and that better applications would improve the usefulness of the iPad, particularly in regard to graphical and video content suitable to sharing with patients.ConclusionsPhysicians in this study felt that the iPad could fill a need between smartphones and desktops, which were their primary technology tools prior to receiving the iPad, but that useful medical applications and resources are currently limited for the iPad. In particular, better graphical and video content would improve the usefulness of the iPad as a tool for patient interactions. Apps that store content locally would serve to mitigate inconsistent internet access that is still common in rural settings, increasing the usefulness of the iPad in that context. Tablets like the iPad also have potential for use in accessing the electronic medical record systems that are increasingly being implemented in rural hospitals and healthcare facilities.     

Whole-slide imaging: routine pathologic diagnosis

Digital pathology systems offer pathologists an alternate, emerging mechanism to manage and interpret information. They offer increasingly fast and scalable hardware platforms for slide scanning and software that facilitates remote viewing, slide conferencing, archiving, and image analysis. Deployed initially and validated largely within the research and biopharmaceutical industries, WSI is increasingly being implemented for direct patient care. Improvements in image quality, scan times, and imageviewing browsers will hopefully allow pathologists to more seamlessly convert to digital pathology, much like our radiology colleagues have done before us. However, WSI creates both opportunities and challenges. Although niche applications of WSI technology for clinical, educational, and research purposes are clearly successful, it is evident that several areas still require attention and careful consideration before more widespread clinical adoption of WSI takes place. These include regulatory issues, development of standards of practice and validation guidelines, workflow modifications, as well as defining situations where WSI technology will really improve practice in a cost-effective way. Current progress on these and other issues, along with improving technology, will no doubt pave the way for increased adoption over the next decade, allowing the pathology community as a whole to harness the true potential of WSI for patient care. The digital decade will likely redefine how pathology is practiced and the role of the pathologist.     

Molecular diagnosis and prognosis in gynecologic oncology.

Currently, molecular pathology plays a limited role in improving patient outcome in gynecologic oncology. However, molecular investigation is providing important insights into the epidemiology, pathogenesis, and progression of female genital cancers. Future roles should include prediction of poor outcome in low-risk cases, more accurate staging of multifocal tumors, identification of new precursor lesions, and prediction of response to specific therapeutic regimens. Gene therapy of some malignant tumors may become important in the near future. In the immediate future, however, the most significant role of molecular pathology may be in the screening and triage of putative cervical cancer precursors and in the possible prophylaxis of these lesions by means of a vaccine or vaccines against human papillomaviruses.