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Flow chart detailing data collection, journey map development and analysis. This figure illustrates the phases and processes of this study. Data was collected from a retrospective cohort of 104 palliative care patients and journey maps were subsequently developed. Preliminary screening of the journey maps was performed to obtain a purposive sample that best highlighted the breadth of information and healthcare encounters captured within the journey maps. A total of 16 maps were selected for further analysis. Following questionnaire development and pre-test, questionnaires were distributed, and responses collected and analysed over two rounds to obtain consensus. Free-text comments from both rounds were collected for thematic analysis
Source publication
Background
Journey mapping involves the creation of visual narrative timelines depicting the multidimensional relationship between a consumer and a service. The use of journey maps in medical research is a novel and innovative approach to understanding patient healthcare encounters.
Objectives
To determine possible applications of journey mapping...
Citations
... Another strength of this PJM methodology is that it intentionally includes demand (users)-and supply (healthcare provider)-side insights from within the same health system catchment area. This helps to systematically identify service delivery gaps and contextually specific improvements to health services [46][47][48]. For example, HCP insights about the impacts of COVID-19 redirecting health systems resources were helpful to contextualize patient's observations about sudden stockouts in medications and testing kits in this PJM study. ...
Background
To ensure that health services are high-quality, trusted and used by the population, their design and improvement should start from the perspective of what matters to people. Patient journey mapping (PJM) is one research method that centers the experiences of individuals living with health conditions and follows their pathways through care and recovery. This paper describes a novel, qualitative PJM methodology used in Vietnam and the Philippines to inform the co-design of a people-centered viral hepatitis screening, care and treatment pathway for individuals living with chronic hepatitis, which is a significant public health concern in the Asia-Pacific region.
Methods
Data collection involved in-depth interviews with a purposive sample of 63 people living with hepatitis (demand-side) and focus group discussions with healthcare providers working in the same geographical areas (supply-side). Rapid deductive qualitative analysis was used to identify typical journeys, and related barriers and enablers. The methodology was implemented over 8 weeks, adapting the Consolidated Criteria for Reporting Qualitative Research (COREQ).
Results
This paper demonstrates how a PJM methodology that incorporates patient and HCP perspectives can be feasibly implemented in two LMIC contexts, while fulfilling many of the criteria identified by the COREQ guidelines. Sharing such methods and associated instruments may help to enable broader uptake and application in other LMIC settings, providing health systems practitioners with a critical tool to identify and overcome barriers in and promote the delivery of people-centered health services globally.
Conclusion
Despite limited uptake, especially in resource-limited contexts and at the primary healthcare level, PJM is a novel research method with the potential to make promising contributions to people-centered health service design.
... One way to achieve this is through 'patient journey mapping', which seeks to understand and improve the experience of patients as they encounter, interact with and navigate the healthcare system. It involves various methods of documenting and mapping key touchpoints during their encounter with the healthcare system to achieve a range of outcomes, in particular a deeper understanding of their experiences of healthcare and the problems they face (Davies et al. 2023;Ly, Runacres, and Poon 2021). It has also been applied in healthcare service design and policy responses to improve cancer care (Ciria-Suarez et al. 2021;Clark et al. 2019;Hall, Joensen, and Malchau Dietz 2023;Y. ...
Standardised healthcare is primarily focused on remediation and delivered episodically through costly and fragmented healthcare systems. Such an approach is untenable, given the diversity and complexity of peoples' healthcare needs, increasing prevalence of chronic disease and existing heath inequities. A life course perspective fundamentally challenges our current understanding of healthcare and has great potential to promote innovation in healthcare practice, systems and policy. However, the way that health develops and manifests across the life course is a highly complex process underpinned by a plethora of causal antecedents, consequences and interdependencies that have yet to be adequately captured and articulated in current life course frameworks. The field of cancer survivorship and its recent rise to prominence provides a highly relevant and compelling case example to inform development and refinement of existing life course frameworks. Cancer survivorship exemplifies what can be described as an integrated diachronic life course perspective, which serves as a conceptual framework to enhance our understanding of health development across the life course and guide healthcare practice, systems and policy to meet the increasingly complex healthcare needs of current and future generations.
... The technique places the user at the center of the journey and doing this allows the product or service provider to identify areas for improvement. The journey map, although developed initially in marketing and customer relations, has wide potential application in health care (10,11). We propose using a journey map for data to identify key points in the health care system where support might be provided to reliably collect data and where AI tools could be used. ...
The Caribbean small island developing states have limited resources for comprehensive health care provision and are facing an increasing burden of noncommunicable diseases which is driven by an aging regional population. Artificial intelligence (AI) and other digital technologies offer promise for contributing to health care efficiencies, but themselves are dependent on the availability and accessibility of accurate health care data. A regional shortfall in data professionals continues to hamper legislative recognition and promotion of increased data production in Caribbean countries. Tackling the data shortfall will take time and will require a sustainably wider pool of data producers. The data journey map is one approach that can contribute to overcoming such challenges. A data journey map is a process for organizing the collection of health data that focuses on interactions between patient and health care provider. It introduces the idea that data collection is an integral part of the patient journey and that interactions between patient and provider can be enhanced by building data collection into daily health care. A carefully developed and enacted data journey map highlights key points in the care pathway for data collection. These so-called data hotspots can be used to plan – then eventually implement – appropriate AI health care solutions. In this article we introduce the idea of journey mapping, offer an example using cervical cancer prevention and treatment, and discuss the benefits and challenges to implementing such an approach.
Keywords
Artificial intelligence; noncommunicable diseases; delivery of health care; data collection; Caribbean Region
... Nevertheless, using a unified care tool for identifying variations to develop consensus can enhance care consistency. Ly et al. (Ly, Runacres, & Poon, 2021) suggest that journey map longitudinally describes patient's healthcare process in various settings and time periods. The identified consistent and overall structure enables medical personnel to better understand the disease course patient experienced, facilitating the interaction between patient and healthcare service to identify the model for illness progression, further realizing patient's care needs and experience, which helps nursing providers positively and properly solve these problems. ...
Background: Idiopathic scoliosis is commonly found in adolescents of 10 to 17 years of age, patients are required to encounter several essential measures and types in treatment. Healthcare team provides patients with complete and continuous treatment, in which a comprehensive care criterion has been a crucial issue.Aim: This article aims to develop a care criterion tool with reliability and validity.Subject and methods: By using cross-sectional study, a care criterion is developed with literature review. Moreover, the contents were reviewed by experts which further modified based on nursing personnel’s recommendation after actual use among clinical patients.Results: The “Care Journey Map for Scoliosis Patients” with contents of 72 items had been completed, in which the expert validity was 0.98. After use by nursing personnel, items with 100% completeness achieved 76.2%, the overall satisfaction from nursing personnel was 89.9% and 100% agreed the completeness and significance of this care map.Conclusion: The “Care Journey Map for Scoliosis Patients” is a care criterion developed based on literature review by nursing experts with years of clinical experience, considering transverse and longitudinal time axes as main parts for the overall process in patient care. The tool is proved to be with reliability and validity, which can be a care criterion provided for clinical nurses’ compliance, meriting clinical promotion.
... Red color (i.e., top part of each bar) shows the number of articles that clearly mentioned an operation type, and the blue color (i.e., the bottom part of the bars) shows that the operation type was not clearly mentioned and was inferred from the paper. Journey mapping (also referred to as patient journey mapping) is proposed as a novel approach in medical healthcare that facilitates understanding of patients' healthcare experiences, and is argued to provide a patient-centric approach to research and care, which involves creation of narrative timelines, demonstrating patients' different experiences such as healthcare encounters [86]. One of the methods in the patient journey mapping is experience mapping, which provides a broad overview of how individuals interact with different services and products [72]. ...
Social robots have great potential in supporting individuals' physical and mental health/wellbeing. While they have been increasingly evaluated in some domains, such as with children with autism, their evaluation has not been as extensive in other areas. We present a systematic review of domains in which social robots have been evaluated specifically in health/wellbeing contexts. We ask which robots have been evaluated, who the participants were, and how participants interacted with the robots. PRISMA guidelines for systematic reviews were followed. Articles with children as participants, using a purely robotic device, and in languages other than English were excluded. 9362 peer-reviewed articles (up to February 2021) from ACM DL, IEEE Xplore, Scopus, PubMed, and PsychInfo were identified. After applying the inclusion/exclusion criteria 443 articles were included in the review. The majority of studies were conducted at care centres while studies in hospitals/clinics have seen relatively limited attention. In many cases, the social robots were not programmed for specific health-related tasks, limiting their application. We also discuss robots used in real-world settings and propose a “Personal healthcare journey”, which includes different stages of one's life which could benefit from a social robot, with the goal of increasing long term adoption of social robots for supporting health/wellbeing.
... In the process of designing and developing medical devices, biomedical innovators have at their disposal a range of formal methods to incorporate user requirements. Our review shows that four methods were used to involve users in the MDD process, despite several other available approaches could have been considered such as heuristic evaluation, journey mapping, 79 and cognitive walkthrough. 80 The majority of the studies used surveys, probably due to their effectiveness in gathering user feedback, namely through scalability, cost-effectiveness, standardization of data, anonymity, and quick data collection. ...
Objective
This systematic review aims to describe the involvement of persons with epilepsy (PWE), healthcare professionals (HP) and caregivers (CG) in the design and development of medical devices is epilepsy.
Methods
A systematic review was conducted, adhering to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines. Eligibility criteria included peer‐reviewed research focusing on medical devices for epilepsy management, involving users (PWE, CG, and HP) during the MDD process. Searches were performed on PubMed, Web of Science, and Scopus, and a total of 55 relevant articles were identified and reviewed.
Results
From 1999 to 2023, there was a gradual increase in the number of publications related to user involvement in epilepsy medical device development (MDD), highlighting the growing interest in this field. The medical devices involved in these studies encompassed a range of seizure detection tools, healthcare information systems, vagus nerve stimulation (VNS) and electroencephalogram (EEG) technologies reflecting the emphasis on seizure detection, prediction, and prevention. PWE and CG were the primary users involved, underscoring the importance of their perspectives. Surveys, usability testing, interviews, and focus groups were the methods used for capturing user perspectives. User involvement occurs in four out of the five stages of MDD, with production being the exception.
Significance
User involvement in the MDD process for epilepsy management is an emerging area of interest holding a significant promise for improving device quality and patient outcomes. This review highlights the need for broader and more effective user involvement, as it currently lags in the development of commercially available medical devices for epilepsy management. Future research should explore the benefits and barriers of user involvement to enhance medical device technologies for epilepsy.
Plain Language Summary
This review covers studies that have involved users in the development process of medical devices for epilepsy. The studies reported here have focused on getting input from people with epilepsy, their caregivers, and healthcare providers. These devices include tools for detecting seizures, stimulating nerves, and tracking brain activity. Most user feedback was gathered through surveys, usability tests, interviews, and focus groups. Users were involved in nearly every stage of device development except production. The review highlights that involving users can improve device quality and patient outcomes, but more effective involvement is needed in commercial device development. Future research should focus on the benefits and challenges of user involvement.
... By leveraging the creativity of visual arts, journey mapping allowed the women to express their lived health experiences in a more holistic and nuanced approach, and its effectiveness for the case study 2 was in its ability to go beyond conventional verbal communication, offering a less intimidating platform for expression where stigma, privacy concerns, and socio-cultural dynamics often obstruct open and honest discussion. Using journey maps proved to be a novel and innovative approach in understanding patient healthcare encounters as discovered in other similar work (Ly et al., 2021). Through both case studies, journey maps, as a form of art-based research, provided opportunities for rich and in-depth insights into perception studies and identifying motivational factors that drive health behaviours, and this is particularly important for psychology researchers. ...
... Secondly, inspired by a recent paper by Ly et al. [31], we identified use cases along a hypothetical patient journey, as shown in Figure 2. ...
... Secondly, inspired by a recent paper by Ly et al. [31], we identified use cases along a hypothetical patient journey, as shown in Figure 2. Hypothetical patient journey and related data sources. In this example, a patient is diagnosed with a primary tumour that worsens during treatment in trial 1. Treatment in a second trial 2 is successful. ...
Simple Summary
Large datasets concerning childhood cancers are rare. Therefore, it is important to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), datasets can be merged, without disclosing the patients’ identities. Although PPRL is already implemented or described in various settings, use case descriptions are fragmented and incomplete. The present paper gives an overview of current and future use cases of PPRL in childhood cancer. We screened the literature, projects, and trial protocols, analysed a hypothetical patient journey, and discussed use cases with experts. All the identified use cases were structured along six key dimensions. We conclude that PPRL is a key concept in childhood cancer. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer.
Abstract
Large datasets in paediatric oncology are inherently rare. Therefore, it is paramount to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), personalised or pseudonymised datasets can be merged, without disclosing the patients’ identities. Although PPRL is implemented in various settings, use case descriptions are currently fragmented and incomplete. The present paper provides a comprehensive overview of current and future use cases for PPRL in paediatric oncology. We analysed the literature, projects, and trial protocols, identified use cases along a hypothetical patient journey, and discussed use cases with paediatric oncology experts. To structure PPRL use cases, we defined six key dimensions: distributed personalised records, pseudonymisation, distributed pseudonymised records, record linkage, linked data, and data analysis. Selected use cases were described (a) per dimension and (b) on a multi-dimensional level. While focusing on paediatric oncology, most aspects are also applicable to other (particularly rare) diseases. We conclude that PPRL is a key concept in paediatric oncology. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer.
... There is growing awareness of the need for 'cancer navigators' to assist cancer patients to navigate the technical and logistical complexities across their care journey (Chan et al., 2023 Chan et al., 2023;Gallagher et al., 2022) and applications of patient journey mapping (Bulto, Davies, et al., 2024;Joseph et al., 2023;Ly et al., 2021). A Care Biography is thus a diachronic or temporally integrated representation of the patient, their care needs, and their care network, and can facilitate greater focus on integrated and continuous (rather than episodic) approaches to care provision over extended periods of time. ...
In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person‐centred care. Walker and Avant's eight‐step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping , Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts , and Self‐Care , which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.
... A critical learning from this implementation was the value of completing a client journey mapping exercise to conceptualize ongoing changes to service delivery processes, particularly within complex systems. This technique has been used in past healthcare initiatives to increase clinical effectiveness, and improve patient experiences and healthcare delivery by creating a narrative timeline of what a patient would encounter as they navigate the system (Ly et al., 2021;McCarthy et al., 2020). The two most common reasons client journey mapping is used is for health service redesign and developing a more nuanced understanding of the client's journey through the health system (Davies et al., 2023), both of which were present in the current study. ...
This study examines the process of implementing One-at-a-Time (OAAT; i.e., single-session) therapy into child and youth addiction and mental health services in New Brunswick. The implementation process was retrospectively mapped onto implementation science frameworks. Providers were recruited to participate in research associated with the system change, and completed surveys to assess readiness for implementation. Client satisfaction and system-outcomes were measured through surveys and system indicators, respectively. Key implementation considerations included age of consent for services, implementation within an integrated service delivery model, and mapping the client journey to conceptualize changes in service delivery. Providers (N = 214) felt that OAAT therapy was acceptable and appropriate to implement into practice, and would lead to observable short-term outcomes. During the implementation (April–December 2022), 2266 sessions were delivered, resulting in a 62% waitlist reduction. Most clients who completed the satisfaction survey (N = 518) reported benefit. This study elucidates the successful implementation of OAAT therapy for children and youth, and can serve as a heuristic for comparable practice change initiatives.
