The MediStori. A personal health record and standardised self-management toolkit which can improve integrated care systems

摘要

An introduction: (comprising context and problem statement) Integrated care is critical in today’s health care settings. There are many causations for disintegrated services, but one critical component which may impact on the success of such projects in practice, could be said to be related to disconnected health information. This abstract sets out to show the benefits for all stakeholders in healthcare through delivering and implementing a standardised integrated personal health record (PHR) toolkit, which is continually updated and managed by a patient or carer, and promoted at the point of care by health professionals. The founder of this project, a patient and carer to three children with differing conditions, ascertained through lived experiences, that most acute health care settings were fragmented – many focusing on one disease at a time, meaning most often, a holistic viewpoint was not considered, thus impacting on issues such as comorbidity, medication reconciliation and disconnected health information. Initially for personal use, the founder created a toolkit, MediStori. The MediStori has a dual purpose – it is a paper-based PHR and it is a self-management toolkit. The major advantage of a PHR is that it collates all the relevant medical and related information concerning a patient in one place, in a manner that is helpful and usable (MacNeela, 2015) and could impact positively on integrated care in practice. Furthering from its original developments, progression of the toolkit to make it available to others was initiated; using co-design and quality improvement methodologies throughout. MediStori aimed to keep all of family’s information together, from birth to end-of-life; could help a patient or carer communicate relevant health information at the point of care in both primary and acute settings (a critical component for integrated care), and assist in the self-management of conditions in the home. As a patient is the only common denominator between all their health professionals, the principles upon which it was built were reliant on two theories 1) it should be promoted at the point of care and 2) integrated care should focus foremost on a person’s needs, and thereafter, the disease, because, irrelevant of conditions, patients all had similar issues: 1) Managing, understanding and adhering to medications, treatments or therapies 2) Accessing, managing and attending health appointments 3) Communicating, storing and managing personal health information 4) Coping with emotional, physical, social or financial impacts 5) Understanding diagnostics, diseases, terminology or services To investigate this theory, and progress the development of the toolkit, a national research project was funded by the Quality Improvement Division of the HSE. The research intervention included a national study on service users and health professionals to gain insights and feedback on the toolkit and their experiences of integrated health services. The study represented unique team collaboration between: Expert Patients; HSE Leads; Chief Pharmacists; Child Healthcare Coordinators; Clinical Nurse Specialists; General and Specialised Hospitals; National Charities; and an Academic Researcher, who oversaw and evaluated the outcomes of same. As integrated care is related to all disciplines, multiple surveys were used to elicit stakeholder input: one was community-based, through charity organisations and the second was of outpatients in acute hospital settings. Quantitative evaluations were triangulated between the settings using and the survey elicited considerable optional, qualitative feedback from participants. The collaborative approach to assess the cause and extent of the problem taken ensured that citizen perspectives, healthcare policy makers, organisations, NGOs, innovation developers and evaluation researchers could cooperate to achieve various goals: to assess the need for support around medication compliance, healthcare utilisation, information management – all needs associated with integrated care. Short description of practice change implemented : Clinical Nurse Specialists & Self- Management Coordinators were trained to deliver the study and toolkit to service users and it was in this instance where implementation of integrated care services was delivered. The pilot study at the two acute hospital sites were designed to take advantage of the patient wait of between 45 minutes to 90 minutes before being seen by a doctor at outpatient clinics. This was an opportunity to engage with patients to educate them on the benefits of self-management, self-care and engagement through adoption of a personal health record system. Training on medication management, symptom monitoring, and keeping important information together were given during this time. Patients were recommended to utilise the toolkit and bring it the various health professionals whom they engaged with. They were also advised to bring it back to return OP