Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance 'Top 10s'.

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.

How 'significant others' may support parents with decision-making about their child's cancer care: An integrative literature review.

AIM: To synthesise what is known from current international evidence about how parents are supported by significant others when they are faced with making decisions about their child's cancer care. BACKGROUND: Parents are faced with making challenging decisions when their child has cancer and may benefit from support. Whilst previous research has comprehensively explored how healthcare professionals can offer support, little attention has been given to how support may be informally provided from a parent's network of significant others. METHOD: An integrative literature review was undertaken and reported following the ENTREQ framework. Literature was identified from comprehensive database searching across four relevant databases (CINAHL, PubMed, PsychINFO and British Nursing Database) and hand-searching reference lists of retrieved studies. Studies that met the inclusion criteria were critically appraised and then analysed using the Constant Comparative Analysis method. RESULTS: Twenty-six articles were included in the review. Two overarching themes were identified. Theme 1-Dimensions of Decision-Making support-included three sub-themes: informational, emotional and instrumental mechanisms of support. Theme 2-Expectations of Decision-Making support-identified that parents' expectations of their own role, and the role of their significant others, affected how decision-making was supported. CONCLUSIONS: Parents may seek and receive support from various significant members of their network, but there is a fine line between supportive and unsupportive behaviours. RELEVANCE TO CLINICAL PRACTICE: Each family's unique personal, social and cultural context strongly impacts on their support needs, and nurses and other healthcare professionals should be mindful of how parents may access support from their significant others. Further in-depth research around this area would contribute important knowledge around parents' support needs.

Desperately Seeking Intersectionality in Digital Health Disparity Research: Narrative Review to Inform a Richer Theorization of Multiple Disadvantage.

BACKGROUND: Digital consultations between patients and clinicians increased markedly during the COVID-19 pandemic, raising questions about equity. OBJECTIVE: This study aimed to review the literature on how multiple disadvantage-specifically, older age, lower socioeconomic status, and limited English proficiency-has been conceptualized, theorized, and studied empirically in relation to digital consultations. We focused mainly on video consultations as they have wider disparities than telephone consultations and relevant data on e-consultations are sparse. METHODS: Using keyword and snowball searching, we identified relevant papers published between 2012 and 2022 using Ovid MEDLINE, Web of Science, Google Scholar, and PubMed. The first search was completed in July 2022. Papers meeting the inclusion criteria were analyzed thematically and summarized, and their key findings were tabulated using the Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research criteria. Explanations for digital disparities were critically examined, and a search was undertaken in October 2022 to identify theoretical lenses on multiple disadvantage. RESULTS: Of 663 articles from the initial search, 27 (4.1%) met our inclusion criteria. In total, 37% (10/27) were commentaries, and 63% (17/27) were peer-reviewed empirical studies (11/27, 41% quantitative; 5/27, 19% qualitative; 1/27, 4% mixed methods; 1/27, 4% systematic reviews; and 1/27, 4% narrative reviews). Empirical studies were mostly small, rapidly conducted, and briefly reported. Most studies (25/27, 93%) identified marked digital disparities but lacked a strong theoretical lens. Proposed solutions focused on identifying and removing barriers, but the authors generally overlooked the pervasive impact of multiple layers of disadvantage. The data set included no theoretically informed studies that examined how different dimensions of disadvantage combined to affect digital health disparities. In our subsequent search, we identified 3 theoretical approaches that might help account for these digital disparities. Fundamental cause theory by Link and Phelan addresses why the association between socioeconomic status and health is pervasive and persists over time. Digital capital theory by Ragnedda and Ruiu explains how people mobilize resources to participate in digitally mediated activities and services. Intersectionality theory by Crenshaw states that systems of oppression are inherently bound together, creating singular social experiences for people who bear the force of multiple adverse social structures. CONCLUSIONS: A limitation of our initial sample was the sparse and undertheorized nature of the primary literature. The lack of attention to how digital health disparities emerge and play out both within and across categories of disadvantage means that solutions proposed to date may be oversimplistic and insufficient. Theories of multiple disadvantage have bearing on digital health, and there may be others of relevance besides those discussed in this paper. We call for greater interdisciplinary dialogue between theoretical research on multiple disadvantage and empirical studies on digital health disparities.

Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.

BACKGROUND: Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision-making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. METHODS: A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi-phase participatory process, including analysis of its application in 24 cases. RESULTS: The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision-making contextual factors. Case study findings show a wide variation in use of metrics. There is no 'one size fits all' set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. CONCLUSION: Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. PATIENT CONTRIBUTION: Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.

Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.

BACKGROUND: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. OBJECTIVE: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. SEARCH STRATEGY AND INCLUSION CRITERIA: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 91 publications, coded and thematically analysed. MAIN RESULTS: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. DISCUSSION AND CONCLUSIONS: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.

BACKGROUND: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. OBJECTIVES: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. SEARCH STRATEGY: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. INCLUSION CRITERIA: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. DATA EXTRACTION AND SYNTHESIS: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. RESULTS: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a "build your own framework" co-design workshop. CONCLUSION: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.

Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.

BACKGROUND: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. METHODS: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. RESULTS: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. CONCLUSIONS: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

Challenges and opportunities for ELSI early career researchers.

BACKGROUND: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline. MAIN TEXT: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics. CONCLUSION: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.

Developing user personas to capture intersecting dimensions of disadvantage in older patients who are marginalised: a qualitative study.

BACKGROUND: Remote and digital services must be equitable, but some patients have difficulty using these services. Designing measures to overcome digital disparities can be challenging for practices. Personas (fictional cases) are a potentially useful tool in this regard. AIM: To develop and test a set of personas to reflect the lived experiences and challenges that older people who are disadvantaged face when navigating remote and digital primary care services. DESIGN AND SETTING: Qualitative study of digital disparities in NHS community health services offering video appointments. METHOD: Following familiarisation visits and interviews with service providers, 17 older people with multiple markers of disadvantage (limited English, health conditions, and poverty) were recruited and interviewed using narrative prompts. Data were analysed using an intersectionality lens, underpinned by sociological theory. Combining data across all participant interviews, we produced personas and refined these following focus groups involving health professionals, patients, and advocates (n = 12). RESULTS: Digital services create significant challenges for older patients with limited economic, social, and linguistic resources and low digital, health, or system literacy. Four contrasting personas were produced, capturing the variety and complexity of how dimensions of disadvantage intersected and influenced identity and actions. The personas illustrate important themes including experience of racism and discrimination, disorientation, discontinuity, limited presence, weak relationships, loss of agency, and mistrust of services and providers. CONCLUSION: Personas can illuminate the multiple and intersecting dimensions of disadvantage in patient populations who are marginalised and may prove useful when designing or redesigning digital primary care services. Adopting an intersectional lens may help practices address digital disparities.

The ecomap: a tool for extending understanding in hermeneutic phenomenological research.

BACKGROUND: Ecomaps are tools used in nursing practice to assess families' social support systems. Ecomaps have been used effectively in qualitative research but little attention has been given to their use as a tool in the methodological approach of hermeneutic phenomenology. AIM: To demonstrate that the use of ecomaps is congruent with the Heideggerian philosophical foundations of hermeneutic phenomenology. DISCUSSION: This article reflects on a study in which the researchers used ecomaps to explore how parents of children with cancer are supported with decision-making about their children's care. Exploration of the Heideggerian concepts of 'being in the world', 'being with' and 'temporality' prompted reflections about how constructing ecomaps furthers understanding of participants' unique contexts. Using an ecomap in an in-depth interview enabled interviewees to return to their experiences of being supported with decision-making; it also further developed the researcher's understanding of how each participant's experience was situated in their evolving relationships with others. CONCLUSION: Constructing ecomaps in hermeneutic phenomenology is in tune with Heideggerian philosophical concepts. Ecomaps can open a door to participants' experiences, deepen the researcher's understanding and find further meaning in those experiences. IMPLICATIONS FOR PRACTICE: Ecomaps are a useful way of shining a light on participants' experiences in hermeneutic phenomenological research. The article provides practical tips to optimise their use in future research.

Safety implications of remote assessments for suspected COVID-19: qualitative study in UK primary care.

BACKGROUND: The introduction of remote triage and assessment early in the pandemic raised questions about patient safety. We sought to capture patients and clinicians' experiences of the management of suspected acute COVID-19 and generate wider lessons to inform safer care. SETTING AND SAMPLE: UK primary healthcare. A subset of relevant data was drawn from five linked in-pandemic qualitative studies. The data set, on a total of 87 participants recruited via social media, patient groups and snowballing, comprised free text excerpts from narrative interviews (10 survivors of acute COVID-19), online focus groups (20 patients and 30 clinicians), contributions to a Delphi panel (12 clinicians) and fieldnotes from an online workshop (15 patients, clinicians and stakeholders). METHODS: Data were uploaded onto NVivo. Coding was initially deductive and informed by WHO and Institute of Medicine frameworks of quality and safety. Further inductive analysis refined our theorisation using a wider range of theories-including those of risk, resilience, crisis management and social justice. RESULTS: In the early weeks of the pandemic, patient safety was compromised by the driving logic of 'stay home' and 'protect the NHS', in which both patients and clinicians were encouraged to act in a way that helped reduce pressure on an overloaded system facing a novel pathogen with insufficient staff, tools, processes and systems. Furthermore, patients and clinicians observed a shift to a more transactional approach characterised by overuse of algorithms and decision support tools, limited empathy and lack of holistic assessment. CONCLUSION: Lessons from the pandemic suggest three key strategies are needed to prevent avoidable deaths and inequalities in the next crisis: (1) strengthen system resilience (including improved resourcing and staffing; support of new tools and processes; and recognising primary care's role as the 'risk sink' of the healthcare system); (2) develop evidence-based triage and scoring systems; and (3) address social vulnerability.

Planning and Evaluating Remote Consultation Services: A New Conceptual Framework Incorporating Complexity and Practical Ethics.

Establishing and running remote consultation services is challenging politically (interest groups may gain or lose), organizationally (remote consulting requires implementation work and new roles and workflows), economically (costs and benefits are unevenly distributed across the system), technically (excellent care needs dependable links and high-quality audio and images), relationally (interpersonal interactions are altered), and clinically (patients are unique, some examinations require contact, and clinicians have deeply-held habits, dispositions and norms). Many of these challenges have an under-examined ethical dimension. In this paper, we present a novel framework, Planning and Evaluating Remote Consultation Services (PERCS), built from a literature review and ongoing research. PERCS has 7 domains-the reason for consulting, the patient, the clinical relationship, the home and family, technologies, staff, the healthcare organization, and the wider system-and considers how these domains interact and evolve over time as a complex system. It focuses attention on the organization's digital maturity and digital inclusion efforts. We have found that both during and beyond the pandemic, policymakers envisaged an efficient, safe and accessible remote consultation service delivered through state-of-the art digital technologies and implemented via rational allocation criteria and quality standards. In contrast, our empirical data reveal that strategic decisions about establishing remote consultation services, allocation decisions for appointment type (phone, video, e-, face-to-face), and clinical decisions when consulting remotely are fraught with contradictions and tensions-for example, between demand management and patient choice-leading to both large- and small-scale ethical dilemmas for managers, support staff, and clinicians. These dilemmas cannot be resolved by standard operating procedures or algorithms. Rather, they must be managed by attending to here-and-now practicalities and emergent narratives, drawing on guiding principles applied with contextual judgement. We complement the PERCS framework with a set of principles for informing its application in practice, including education of professionals and patients.

Pre-assessment for children scheduled for day surgery.

This article reports on an evaluation of a established pre-assessment clinic for children scheduled for day surgery. The results suggest that the pre-assessment clinic increases the efficiency and effectiveness of the admissions process for children. The authors discuss the results in detail and make recommendations for further research and nursing practice. They suggest, for example, that evaluative research can provide a framework for assessing new services.

Making the most of the waiting room: Electronic patient engagement, a mixed methods study.

OBJECTIVE: The purpose of this study was to explore whether patients with musculoskeletal conditions would agree to use digital technologies to learn about research registries and make a decision about signing up whilst in the clinic waiting room. METHODS: Patients were recruited from four hospital clinics across Oxfordshire. We used an explanatory mixed methods design with two sequential phases comprising an exploratory, cross-sectional questionnaire (n = 84), followed by focus group interviews (n = 8) to provide context for the findings from the questionnaire. Multivariate ordinal logistic regression models were used to explore relationships between patient preferences and characteristics. Thematic analysis was used to understand the reasons for patient preferences regarding digital technologies and research registries. RESULTS: As participants' age increased, they were more likely to report a preference for face-to-face recruitment methods compared to those using digital technologies. Findings from the focus groups indicated this was primarily due to a fear of technology and physical limitations associated with a patient's condition. Patients also reported a preference for making a decision about signing up at a later date, which was attributed to patients feeling distracted whilst in the waiting room due to anxieties related to their upcoming appointment. CONCLUSIONS: Many patients with musculoskeletal conditions in the UK may be interested in learning about opportunities to participate in research whilst using digital technologies within the waiting room. The results suggest the need for choice regarding the presentation and format of information and whether it can be accessed at a later date at home.

"A stressful and frightening experience"? Children's nurses' perceived readiness to care for children with cancer following pre-registration nurse education: A qualitative study.

BACKGROUND: In the UK children with cancer are cared for by children's nurses in a variety of settings, specialist and non-specialist. Whilst post-registration specialist education is available to some nurses, many nurses rely solely on pre-registration education to competently care for these children. This study explores whether nurses perceive that this adequately prepares them. OBJECTIVES: To explore the extent to which qualified nurses perceive that pre-registration nurse education prepares them to care for children with cancer; to consider the implications for children's nursing pre-registration curricula. DESIGN: A small-scale qualitative study was undertaken using an interpretivist approach. METHODS: Semi-structured interviews were conducted with six qualified children's nurses in two clinical areas - a specialist children's cancer inpatient ward, and a general children's ward where inpatients included children with cancer. RESULTS: Findings are discussed in relation to three emergent themes: Learning in Theory and Practice, Care of the Child and Family, and Resilience. Participants attached significance to the quantity and quality of practice experience. They reflected on barriers to specific and transferable theoretical learning and stressed the importance of integrating theory and practice. Understanding of family-centred care formed a significant part of their preparation. Preconceptions, communication with families and the emotional impact of this speciality were stressful. Improved pre-registration preparation may have developed participants' resilience. CONCLUSION: The complexities of caring for children with cancer and their families require well-prepared nurses. Participants' perceptions of preparedness were influenced by aspects of pre-registration education. Their experiences suggest that curricula should be practice-focused and include a range of placements. Specialist theoretical content must be integrated with practice and transferability of knowledge and skills made explicit. Reflection and problem-based learning may foster coping mechanisms and resilience that will equip them to care for children with cancer.

Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.

BACKGROUND: Significant advances in digital technologies have meant that health care data can be collected, stored, transferred, and analyzed for research purposes more easily than ever before. Participant-centric initiatives (PCI) are defined as "tools, programs, and projects that empower participants to engage in the research process" using digital technologies and have the potential to provide a number of benefits to both participants and researchers, including the promotion of public trust in medical research, improved quality of research, increased recruitment and retention, and improved health care delivery. OBJECTIVE: The main objective of this scoping review is to describe the extent and range of PCIs across the United Kingdom, United States, and Japan that are designed to facilitate medical research. METHODS: The methodological framework described by Levac et al will be applied to this scoping review. We will search electronic databases (MEDLINE, EMBASE, PsychINFO, Cumulative Index to Nursing, and Allied Health Literature and CiNii), grey literature sources, Internet search engines (Google and Bing), and hand search key journals and reference lists of relevant articles. All digital tools and programs will be eligible for inclusion if there is a description of key features and functions that fall within the parameters of a PCI. Only those that play a role in medical research will be included. RESULTS: Preliminary searches conducted in MEDLINE and EMBASE retrieved 1820 and 2322 results, respectively. The scoping review will be completed by January 2018. CONCLUSIONS: The scoping review will be the first to map the extent and range of PCIs currently available across the United Kingdom, United States, and Japan, and will be the first review to contribute to a better understanding of what PCIs patients may benefit from. Researchers and practitioners will be able to use information in this review as a guide for patients and also as a guide for the development of future tools and programs. The results will be disseminated through a peer-reviewed publication and conference presentations.