Digital tools like smartphone applications and wearable health devices support people to play a greater role in their own care and that of others. Personal health records (PHRs) allow users to store information about their health online, to view records held by healthcare services and to add their own information. PHRs have the potential to help people manage their well-being, improve patient care and provide new ways to offer care. This article describes the benefits that PHRs bring to healthcare, their challenges and the practical steps for establishing a PHR platform to connect neurologists with their patients, based on 4 years of PHR experience in our neurology unit.

Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs. To understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care. A cross-sectional survey was co-designed with patient and public representatives, as part of a mixed-methods study to explore what integrated care means for people living with HD. The survey was distributed online and via charities, collecting quantitative and qualitative data. Descriptive statistics and content analysis were performed. A total of 153 people, from 45 counties in England, participated in the survey. When assessing person-centered coordinated care, 65% of respondents rated their care as very poor, poor, or expressed a neutral opinion; carers reported the lowest scores. Although 58% of the participants said it was extremely important to have a care coordinator, only 19% of people reported having one, with these coordinators being identified in only 40% of the counties. Nevertheless, people with access to a care coordinator reported markedly improved care experiences. People living with HD commonly report fragmented care, geographical inequalities in care access, and unmet complex needs. Future research should focus on developing an HD integrated care model tailored to address these complex needs, including an evaluation of the cost-effectiveness of an HD care coordinator.

People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions.

Clinical coding uses a classification system to assign standard codes to clinical terms and so facilitates good clinical practice through audit, service design and research. However, despite clinical coding being mandatory for inpatient activity, this is often not so for outpatient services, where most neurological care is delivered. Recent reports by the UK National Neurosciences Advisory Group and NHS England's 'Getting It Right First Time' initiative recommend implementing outpatient coding. The UK currently has no standardised system for outpatient neurology diagnostic coding. However, most new attendances at general neurology clinics appear to be classifiable with a limited number of diagnostic terms. We present the rationale for diagnostic coding and its benefits, and the need for clinical engagement to develop a system that is pragmatic, quick and easy to use. We outline a scheme developed in the UK that could be used elsewhere.

Single photon emission tomography (SPECT) can detect early changes in brain perfusion to support the diagnosis of dementia. Inflammation is a driver for dementia progression and measures of inflammation may further support dementia diagnosis.