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As digital health technologies become increasingly integrated into health care systems worldwide, there is growing recognition that their full potential can be realized only when development is rooted in patient engagement (PE). Despite its proven value in clinical research and health care delivery, PE remains insufficiently embedded in digital health design and implementation. This perspective paper explores the current state of PE in digital health through findings from the Stakeholder Expectations Matrix program developed by Patient Focused Medicines Development. Drawing from 37 in-depth interviews across 6 key stakeholder groups, complemented by insights gathered during a multisession cocreation track at the Patient Engagement Open Forum, this paper highlights differing perspectives on digital health, the barriers to meaningful engagement, and the fragmented nature of data governance and technology adoption. Findings point not only to significant gaps in shared understanding, infrastructure, and policy but also to clear opportunities for collaboration, including early recommendations for building a more inclusive and patient-centered digital health ecosystem, one that supports sustainable innovation, trust, and systemwide impact.

Background Despite the problem of inadequate recruitment to randomised trials, there is little evidence to guide researchers on decisions about how people are effectively recruited to take part in trials. The PRioRiTy study aimed to identify and prioritise important unanswered trial recruitment questions for research. The PRioRiTy study - Priority Setting Partnership (PSP) included members of the public approached to take part in a randomised trial or who have represented participants on randomised trial steering committees, health professionals and research staff with experience of recruiting to randomised trials, people who have designed, conducted, analysed or reported on randomised trials and people with experience of randomised trials methodology. Methods This partnership was aided by the James Lind Alliance and involved eight stages: (i) identifying a unique, relevant prioritisation area within trial methodology; (ii) establishing a steering group (iii) identifying and engaging with partners and stakeholders; (iv) formulating an initial list of uncertainties; (v) collating the uncertainties into research questions; (vi) confirming that the questions for research are a current recruitment challenge; (vii) shortlisting questions and (viii) final prioritisation through a face-to-face workshop. Results A total of 790 survey respondents yielded 1693 open-text answers to 6 questions, from which 1880 potential questions for research were identified. After merging duplicates, the number of questions was reduced to 496. Questions were combined further, and those that were submitted by fewer than 15 people and/or fewer than 6 of the 7 stakeholder groups were excluded from the next round of prioritisation resulting in 31 unique questions for research. All 31 questions were confirmed as being unanswered after checking relevant, up-to-date research evidence. The 10 highest priority questions were ranked at a face-to-face workshop. The number 1 ranked question was “How can randomised trials become part of routine care and best utilise current clinical care pathways?” The top 10 research questions can be viewed at www.priorityresearch.ie . Conclusion The prioritised questions call for a collective focus on normalising trials as part of clinical care, enhancing communication, addressing barriers, enablers and motivators around participation and exploring greater public involvement in the research process.

Background The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours. Methods Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement. Results The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to ‘openness’ was the ‘spaces’ and ‘places’ in which meetings between partners could occur in an accessible and equitable way. The issue of ‘space’ is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values. Conclusions This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.

Despite a wealth of activity across the globe in the area of longitudinal population cohorts, surprisingly little information is available on the natural biomedical history of a number of age-related neurodegenerative diseases (ND), and the scope for intervention studies based on these cohorts is only just beginning to be explored. The Joint Programming Initiative on Neurodegenerative Disease Research (JPND) recently developed a novel funding mechanism to rapidly mobilize scientists to address these issues from a broad, international community perspective. Ten expert Working Groups, bringing together a diverse range of community members and covering a wide ND landscape [Alzheimer's, Parkinson's, frontotemporal degeneration, amyotrophic lateral sclerosis (ALS), Lewy-body and vascular dementia] were formed to discuss and propose potential approaches to better exploiting and coordinating cohort studies. The purpose of this work is to highlight the novel funding process along with a broad overview of the guidelines and recommendations generated by the ten groups, which include investigations into multiple methodologies such as cognition/functional assessment, biomarkers and biobanking, imaging, health and social outcomes, and pre-symptomatic ND. All of these were published in reports that are now publicly available online.

The characteristics of health information and its flow throughout health and social care delivery and research is integral to quality integrated care. Electronic Health Record(EHR) systems can facilitate appropriate availability of quality, clinically sensible information to decision makers when and where required. Development of EHRs is very challenging due to the heterogeneity of information producers and consumers, the care, research, regulation and development environment and the range of current and future uses and use contexts for the record. There is also the complexity of the system itself to consider. EHRs are longitidinal and comprise many interdependent aspects e.g. architecture, data storage and user interfaces to suit use settings within care and research organisations as well as home or community environments.Traditionally, patients have not been included in the development of such large scale, complex, national eHealth systems even though they and their carers are in a unique position to describe and comment on the characteristics of information flow across the entire system. In Ireland, the Office of the Chief Information Officer(OOCIO) has placed significant focus on our national EHR development. Some new groupings e.g. the council of clinical information officers (CCIO) have formed and relationships between existing stakeholders and patients are developing and strengthening. One of the more innovative, patient inclusive activities of the OOCIO involves development of personas that will be representative of potential users of our national EHR and will directly influence procurement of our national EHR.The development process for EHR systems is complex with unstable user requirements, a variety of independent stakeholder groupings, interdependent components, essential flexibility and reliance on human skills and teamwork. These characteristics place EHRs squarely in the domain of what are called wicked systems(1). One crucial factor in successful development and adoption of wicked systems is stakeholder engagement with multiple engagement processes required, usually over a long period of time. Due to lengthy project timescales, support and resources it is not usually possible to get consistent, continual stakeholder engagement for the duration of development of a national EHR. So, care needs to be taken on engagement processes, opportunities and outputs.The authors are collaborating with various stakeholders including the national standards authority of Ireland (NSAI), the health informatics society of Ireland(HISI), regulation authorities, the OOCIO, the CCIO, Higher education institutes, industry, patients and patient organisations. This paper will report on three aspects of this collaboration. Firstly, describing our national EHR development environment. Secondly, identifying how patients and their carers could potentially engage meaningfully alongside other stakeholders in the development and adoption of our National EHR. Finally, engagement work to date will be presented including patient persona development with the OOCIO, engagment with NSAI/HSE advisory panel to comment on information standards aspects for our national EHR, a patient focused workshop and feedback session at the HISI annual conference which captured views on and possible next steps for our national EHR development and on the educational front, inclusion of patients in participatory design classes on the MSc in Health Informatics in Trinity College Dublin.References:1- Henver A, March S, Park J. Design Science in Information Systems Research. MIS Quaterly 2004;28(1):75-10575-105.

Plain English summary Biobanks are collections of donations of biological material (DNA, cells, tissue etc.) and related data which are very valuable for research into human diseases. A variety of biobanks exist for example within hospitals, research institutes, pharmaceutical companies and patient organisations. The role of patients in biobanking is changing from being seen simply as donors, to actual collaborators in the design, development and the running of biobanks. In this article, we provide a number of examples of patients acting as partners at the heart of biobanking, where their voice and perspective is being seen and used as a valuable resource for the biobank. Our aim is that these examples can be used by those who work with patients in biobank-based research, to design future strategies for patient and public involvement in all biobanks. Biobanks and biobanking research plays an increasingly important role in healthcare research and delivery as health systems become more patient-centred and medicine becomes more personalised. There is also growing acceptance and appreciation of the value that patients, patient advocacy organisations and the public can bring as stakeholders in biobanking and more generally in research. Therefore, the importance of active, early and sustained engagement and involvement of patient and public representatives in biobanks will become increasingly relevant. Organising and facilitating patient and public involvement in biobanking takes considerable time and effort for all stakeholders involved. Therefore, for any biobank operator considering involving patients and the public in their biobanking activities, consideration of best practices, current guidance, ethical issues and evaluation of involvement will be important. In this article, we demonstrate that patients are much more than donors to biobanks—they are collaborators at the heart of biobanking with an important voice to identify perspective, which can be an extremely valuable resource for all biobanks to utilise. The case studies herein provide examples of good practice of patient involvement in biobanking as well as outcomes from these practices, and lessons learned. Our aim is to provide useful insights from these efforts and potential future strategies for the multiple stakeholders that work with patients and the public involved in biobank-based research.

BackgroundTo date, the rare disease research community is largely fragmented in Ireland without a coherent programmatic focus. All too often, priorities for research are decided by one group of stakeholders. The James Lind Alliance (JLA) model allows us to challenge this dynamic through the Rare Disease Research Partnership (RAinDRoP) Workshop which will enable clinicians, patients and carers to work together to identify and prioritise uncertainties that could be answered by research. The RAinDRoP is a truly collaborative effort in which everybody has a voice, and it refocuses the research on the patients rather than the disease.ObjectivesTo identify and prioritise topics and questions in the three research areas: (1) Route to Diagnosis (2) Living with rare diseases (3) Integrated care or Holistic care.DesignA modified nominal group technique.SettingRepublic of IrelandParticipantsAnyone with experience of care for patients with rare diseases including patients, carers and healthcare professionals.ResultsThis workshop is scheduled to take place on the 04th of April 2019. The result is not available at the time of submission.ConclusionsThis study is the first national prioritisation exercise to identify patient and healthcare professional priorities for rare diseases research. The research priority partnership will identify a range of important gaps in the existing evidence to inform (1) Pathway to Diagnosis, focusing on facilitating early, accurate diagnosis and the communication/informational challenges associated with a rare disease diagnosis (2) Supporting management and self-management of rare disease and (3) Integrated care pathways.

Introduction: The Patient Narrative Project was initiated in 2016 to position the voice of patients and service users centrally in the design and implementation of Integrated Care. This paper presents the findings from Phase Two; the piloting of a qualitative survey tool called ‘Your Voice Matters’ (YVM) to capture a high volume of patient experiences and analysing these to find out the extent to which the person centred coordinated care indicators were made real during 2017.Methods: YVM utilises the SenseMaker® software tool and is underpinned by a partnership approach between service users and providers. The framework is dynamic and can be used to provide real time feedback to inform changes at local levels.The YVM framework consists of:- An online survey that utilizes the SenseMaker® software programme- Engagement plan to maximize service user participation, knowledge and empowerment- Analysis of data by staff and service users together- Identification of key themes and actions to influence the design and delivery of servicesThe survey was available online, in a paper copy or through an app for smartphone or tablet.Results: There were 584 responses. 52% patients/ service users and 45% carers, family/friends. 63.8% of respondents were female.A national workshop of service users and providers was held to review, analyse and interpret the data from the pilot together and identify key themes using a Quantitative Evaluation Matrix.The key issues that impact on successful implementation of integrated care were identified as:Limited joined up communication between patients and healthcare staff and between healthcare settingsLimited evidence of partnership approach in healthcareChallenges in accessing services is a concern for service usersPatient Experience is a driver for sustainable quality health and social care servicesPerson-centred co-ordinated care is not yet a lived reality for patients and service users despite the rhetoric in health and social care strategyDiscussions: The results from Phase 2 give a clear direction of travel for person centred integrated care and show that the approach being taken currently is attempting to address the issues raised. The results also challenge us to move more rapidly towards co-productionConclusions (comprising key findings): The journey towards person centred coordinated care has only begun and although much progress has been made, there is much more to be done and more rapidly.There is a real appetite among patients, carers and healthcare professionals to co-produce solutions.Lessons learned: Clear governance and the need for senior buy is very important. Although often stated, it is not always apparent in actions. Regular communication with key stakeholders and local buy in is key to success.Limitations: There were only 584 responses.More responses will be required to inform the design and operation of health and social care at local levels.Future research: A more detailed analysis of the outputs from Phase 2 is planned which will inform Phase 3. A collaboration involving several countries in the use of this technology would be a positive development.

In 2012 the Irish Department of Health set the agenda[1] in Ireland for the creation of ‘a new integrated model of care that treats patients at the lowest level of complexity that is safe, timely, efficient, and as close to home as possible’. To enable the delivery of integrated models of care five Integrated Care Programmes are being established within the Irish Health Service Executive under the office of the Clinical Strategy and Programmes Division (CSPD)Although ‘integrated care’ has many definitions, it is commonly agreed that its realisation has to result in better outcomes and experience of health services for the individuals who use them, whereby services are well co-ordinated around the needs of the user. In addition, discussions on the development and delivery of services must hold the voice of the user at its core and seek ‘to impose the patient perspective as the organising principle of service delivery’.[2]The ‘Patient Narrative Project’ was initiated in late 2016 to, for the first time in the Republic of Ireland, deliver the patient / service user perspective on what should be expected from person-centred coordinated care and to guide the development of current and future services and strategy through the office of the CSPD.The Irish Platform for Patients’ Organisations, Science & Industry (IPPOSI)[3], with their proven experience and expertise in harnessing a coherent and critical voice of service users has led the first of three phases of the project. This paper describes phase one of the project (which ends in April 2017) in which service users and their organisations will co-produce:a set of generic descriptors for what person-centred co-ordinated care looks and feels like from the Irish service user perspective anda definition for ‘person-centred co-ordinated care’ that is shared, understood and used by service users and staff at all levels of the health service in IrelandIPPOSI has lead an evidence-based, narrative enquiry methodology to hear and collate experiences of service users and patients in Ireland who need care over time from multiple services, as well as their carers and families and the health staff relating to their experiences. The experiences will be translated into descriptors and a definition of person-centred co-ordinated care that will be written not just for the experts, but for patients, people, families and carers.The goal is that the descriptors and definition of what good integrated care and support looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs. Phase two of the project will use the generic descriptors to develop a standard process of engagement with service users that will allow a higher volume of their narratives and experiences to be heard and used to benchmark, guide and develop health services.References:1- Irish Department of Health. Future Health – A Strategic Framework for Reform of the Health Service 2012–2015. Dublin; 20122- Lloyd & Wait., Integrated Care; a guide for policymakers. London. Alliance for Health and the Future. 2005;73- Available from: www.ipposi.ie