REMOTE-Neuro: Co-produced Recommendations to Optimise Remote Neurology
1Human Development and Health, Faculty of Medicine, University of Southampton, UK
2NIHR Applied Research Collaboration Wessex, University of Southampton, UK
3Patient and Public Involvement representative, UK
4Dementia Research Centre, University College London, UK
5The Neurological Alliance, UK
6Research Department of Epilepsy (DoE), University College London and National Hospital for Neurology and Neurosurgery/UCLH, UK
7The Association of British Neurologists, UK
8Wessex Neurological Centre, University Hospital Southampton NHS Foundation Trust, UK
9Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, UK
*Corresponding author: Christopher.Kipps@uhs.nhs.ukAbstract
Objective
To examine stakeholder experiences of remote neurology outpatient care and to co-produce an evidence-based framework to support safe, equitable and sustainable service delivery.
Methods
We undertook an inductive thematic analysis of free-text responses from three national surveys: a patient and carer survey conducted by The Neurological Alliance (2021; n = 2,463) and two surveys of neurologists conducted by the Association of British Neurologists (2020 and 2021; n = 593). Findings were validated through co-production workshops and interviews with patients, carers and healthcare professionals in 2024 (n = 64). Themes were triangulated and refined to generate stakeholder-endorsed recommendations.
Results
Participants valued flexible choice in consultation modality, recognising the accessibility and convenience of remote care, but expressed concerns about clinical quality, privacy and equity. Both patients and clinicians viewed remote care as a distinct skill set requiring tailored training and stronger digital infrastructure. Importantly, some participants perceived remote appointments as less legitimate than in-person consultations, a novel and under-recognised challenge with implications for engagement and health equity. Five domains aligned with NHS transformation principles were identified: (1) patient-centred care, (2) neurology and specialist area considerations, (3) clinical safety and quality, (4) capacity and sustainability, and (5) operational efficiency. These findings informed the REMOTE-Neuro Framework (REcommendations for optimising Modality, Operational efficiency, Training and Equity in NEUROlogy).
Conclusions
Remote care continues to offer significant benefits to both patients and clinicians. However, five years post-pandemic, there are still unresolved issues which limit its effective integration with face-to-face (F2F) care.
Practice implications
REMOTE-Neuro provides the first co-produced set of recommendations to support safe, inclusive and sustainable remote neurology practice. Grounded in over 3,000 stakeholder perspectives and aligned with NHS transformation priorities, it offers a practical roadmap for implementation in neurology and a transferable model for other specialties.
What is already known on this topic
- Remote consultations are now a routine component of neurology outpatient care.
- However, there is limited evidence on how to integrate remote and face-to-face (F2F) modalities safely, effectively, and equitably.
What this study adds
- This large, multi-dataset, co-produced study presents the first evidence-based national framework to optimise remote neurology services.
- It identifies key patient, clinician and system-level factors that shape the effectiveness, safety and perceived value of remote neurology care.
How this study might affect research, practice or policy
- The REMOTE-Neuro framework provides actionable, co-produced recommendations that directly operationalise NHS outpatient transformation priorities.
- It offers a practical structure to guide service design, clinical decision-making, training, digital inclusion strategies, and future evaluation of hybrid neurology models.
Article notes
Competing Interest Statement
The authors have declared no competing interest.
Funding Statement
University Hospital Southampton Small Grant Scheme award (D3GRT0709).
1.Introduction
The COVID-19 pandemic necessitated a rapid shift to remote healthcare delivery. Despite historical concerns about the limitations of remote neurology appointments, increasing evidence indicates that remote appointments, when appropriately triaged, can be both safe and effective with clear advantages to patients, clinicians and the wider healthcare system.1–8
What is less clear though, is how to combine F2F, telephone, video, and asynchronous communication in ways that optimise safety, equity, and patient experience. Most existing studies are based on small samples from single centres and foreground either the patient or clinician perspective.6–8 At UK national level, strategic initiatives such as Getting It Right First Time (GIRFT) provide valuable, and detailed service-wide recommendations for neurology.9 Broader programmes including the NHS Long Term Plan,10 the Outpatient Recovery and Transformation Programme,11 and the Topol Review12 recommend digital innovation and more personalised outpatient care across the NHS. Alongside this, the World Health Organisation and NHS England endorse co-producing new models of care with service users.13 What is missing so far is a single framework to bring these strands together in a way which reflects the lived realities of those delivering and receiving remote neurology care.
To address this gap, we synthesised three national datasets comprising over 3,000 stakeholder perspectives and convened a series of iterative co-production workshops with patients, carers, and healthcare professionals. These workshops validated and enriched the national findings and informed the co-production of a series of recommendations to improve Modality, Operational efficiency, Training, and Equity (REMOTE-Neuro).
To our knowledge, this is the largest study to date focused on remote outpatient delivery within a single specialty. By integrating lived experience with clinical insight at scale, it delivers a practical and stakeholder-endorsed framework to support more person-centred, equitable, and sustainable remote neurology care.
2.Methods
2.1Study design
This study followed a two-phase, mixed-methods design. Phase 1 involved an inductive thematic analysis of national survey data. Phase 2 comprised a series of stakeholder workshops, interviews and focus groups to co-produce practical recommendations.
2.2Data sources and participants
We synthesised four datasets capturing the views of patients, carers and clinicians:
- Neurological Alliance “My Neuro Survey” (2021): free-text reflections on remote consultations provided by 2,463 respondents living with neurological conditions.
- Association of British Neurologists (ABN) Work-Practice Surveys (2020, 2021): quantitative and qualitative data on service delivery, remote-care modalities and condition-specific suitability from 225 neurologists in 2020 and 368 in 2021.
- Patient and carer co-production workshops: three in-person workshops held between January and March 2024 with a purposive sample of 17 neurology patients and four carers.
- Healthcare professional interviews and focus groups: 43 HCPs from the Wessex region, including 20 neurologists and trainees, 12 Parkinson’s, four neuromuscular, two multiple sclerosis and five epilepsy specialist nurses and allied health professionals.
2.3Data analysis
Free-text responses from the three national surveys were coded independently in Excel by four researchers (PF, SF, AZ, AC) using Braun and Clarke’s inductive thematic analysis.14 Themes were developed collaboratively and refined through team discussion to enhance rigour and credibility. Descriptive statistics from the ABN surveys were used to contextualise and triangulate the qualitative findings. Data adequacy, rather than formal saturation, was assessed to ensure sufficient depth and diversity of perspectives.15
2.4Co-production and validation
Draft themes were presented in a series of stakeholder workshops and during staff interviews and focus groups to validate and refine interpretations and co-produce practical, implementable recommendations. Final themes and recommendations were mapped to national priorities outlined in the NHS Long Term Plan¹⁰ and the Outpatient Recovery and Transformation Programme. ¹¹
2.5Ethics
Ethical approval was obtained from the East Midlands–Derby Research Ethics Committee (IRAS ID: 287057).
3.Results
Themes were organised into five domains aligned with NHS transformation principles: (1) patient-centred care, (2) neurology and specialist area considerations, (3) clinical safety and quality, (4) capacity and sustainability, and (5) operational efficiency (see Figure 1). Exemplar quotations and the full set of stakeholder-endorsed recommendations are presented in Supplementary files. Participants (Table 1) comprised patients, carers, and HCPs from across the UK.
3.1‘Patient-Centred Care’
This theme captured the value patients ascribed to remote appointments, but also their concerns around quality, privacy and digital equity. Two subthemes emerged: choice of modality and barriers to remote care.
3.1.1Choice of appointment modality
Many patients emphasised having a genuine choice of all modalities, not just between F2F and telephone. For initial consultations or when new or concerning symptoms arose, they often preferred an in-person visit that allowed a comprehensive assessment including physical examination where necessary. When their condition felt stable, video or telephone follow-ups were generally acceptable. Remote options were valued for their convenience, lower cost, and ability to bridge gaps between in-person reviews. However, staff found managing multiple communication routes at times inefficient and confusing, as patients might use all modalities for a single issue.
3.2‘Neurology and Specialist Area Considerations’
This theme explored the unique clinical and contextual factors influencing how remote care is delivered in neurology. It highlighted the accessibility benefits of remote care but also concerns about the perceived informality of remote care which risked undermining value if not clearly framed and supported.
3.2.1When face-to-face is essential
Free text responses from the ABN surveys highlighted a strong preference for F2F appointments for most new patients and where there was a need for examination, assessment or treatment; to ease communication; in the presence of complexity or known vulnerability; to facilitate involvement of a carer or other HCP; or to respect patient preferences. Clinicians fully supported patient choice, but this had to be clinically safe and appropriate.
Quantitative findings (2021 ABN survey) revealed that over 90% of neurologists preferred F2F assessments over remote formats, with approximately 60% of all consultations conducted in person, 30% by phone, and 10% by video. F2F consultations were preferred for the following neurological problems: weakness (94.5%), gait dysfunction (87.6%), cognitive impairment (81.7%), tremor (74.3%), sensory complaints (70.2%; see Table 2).
3.2.2When remote works well
Free-text ABN responses identified headache, transient loss of consciousness (TLOC), seizures, and sleep disorders as being well-suited for remote appointments, even for new referrals.
Quantitative responses supported these views (headache 88.1%; TLOC 83.6%), although opinions on seizures and sleep were not elicited nor the differentiation between new referrals and follow-ups.
Preferences for remote modality were split relatively evenly between phone and video across both general and subspecialty clinics. Remote appointments were considered more suitable for follow-up patients, although much depended on the particular patient, how well they were known to the team, and other triage-related factors discussed above.
3.2.3Subspecialty considerations
With the exception of headache, seizures, sleep disorders and TLOC, there was less consensus around the suitability of other new and follow up remote appointments. Views differed both within and across subspecialties reflecting, inter alia, the characteristics of each patient population and clinician preferences.
3.2.4Accessibility gains
Both patients and HCPs recognised remote consultations as transformative for accessibility and convenience, particularly for conditions with a wide geographical catchment and for patients with mobility issues, clinical vulnerabilities, severe disabilities, psychosocial issues, and those reaching end-of-life. A quick triaging phone call was useful to filter to the appropriate sub-speciality and clinicians also appreciated the real-world insights gained from homebased assessments of environment and function in which patients were relaxed and comfortable.
3.2.5Communication nuance
Patients with communication challenges felt that remote consultations could still be effective when tailored to their needs. For example, individuals with speech impairments sometimes preferred F2F appointments for ease, while others found video calls using the chat function helpful. For sensitive conversations, many patients favoured F2F, but some found it more comfortable to receive such information at home, where they could have support and more space to process their emotions privately.
3.2.6Perceived value
Clinicians felt that some patients treated remote consultations as having less value than in-clinic encounters, for example answering calls while out shopping. Clinical nurse specialists reported being typically unable to reach three patients in morning clinic, with some asking for a call back later; a formal complaint was later traced to a series of telephone reviews that the patient had not recognised as ‘proper’ appointments.
3.3‘Clinical Safety and Quality’
This theme highlighted the foundational elements required to deliver safe and effective remote care and the practical constraints imposed by the system.
3.3.1Importance of a robust triage process
HCPs stressed the critical importance of robust triage. It was felt to be a time consuming and onerous activity not always fully captured in job plans but improved by being consultant-led. Not all units and staff used a formal triage process to provide uniformity of care.
3.3.2Private space availability
HCPs highlighted significant challenges in shared workspaces. When multiple staff members were on remote calls simultaneously, it became harder to hear patients clearly and to preserve their dignity and confidentiality.
3.3.3Rapid access slot provision
Crucially, HCPs did not always feel confident that they would be able to see patients F2F in the time scale they felt was required after concerns had been identified remotely. Although the ready availability of rapid-access clinic spots was deemed essential for a safe remote service with adequate safety-netting, in some trusts this was compromised by the loss of clinic rooms during the pandemic that had not been returned.
3.3.4Audit and quality improvement
Ongoing audit and feedback cycles, covering patient and staff experience, clinical quality, operational flow and digital inclusion, was seen as essential to ensure pathways remain responsive and evidence-informed over time.
3.4‘Capacity and Sustainability’
This domain looked beyond technology to the workforce, training and co-produced resources that could make virtual appointments sustainable over time.
3.4.1Co-produced resources for patients and carers
Patients and carers said technical glitches such as poor connectivity or uncertainty about what to do if a call failed, could erase some of the advantages of remote care. Neurological symptoms could further limit their ability to troubleshoot in real time. In our co-design workshops, participants asked for co-produced, well-signposted resources that demystified the process and reframed remote care as an empowering option rather than a lesser substitute. Suggestions included co-produced ‘how-to’ guides and decision trees to facilitate choice of appointment type.
3.4.2Training and support for staff
HCPs were conscious that in a rapidly evolving healthcare landscape, they needed to be kept up-to-date with best practices in remote neurology. Investment in staff training would value and motivate them, allow them to care for patients in the way they aspired to and would positively influence workforce recruitment and retention.
Yet, current arrangements could fall short. HCPs acknowledged that shifts in diagnostic processes, missed training opportunities due to technical failures, and trainers working remotely were changing teaching and training. This needed to be recognised by new and innovative training methods for students and staff.
Clinicians reported managing digital systems and related admin beyond their job plans, with much of the innovation driven by individual efforts, not formal roles or resourcing. Importantly, succession planning was often lacking, despite clear signposting, meaning that the departure of key staff left vulnerabilities in knowledge and systems.
3.4.3Defining and assessing remote care competencies
Both HCPs and patients viewed remote care as a distinct skill set requiring specific competencies. HCPs noted challenges in building rapport, assessing disability, and managing risk without visual cues or physical examination, while also needing to troubleshoot technical issues.
Patients highlighted the importance of clinician skill in overcoming communication limitations, particularly the loss of non-verbal cues. For example, in the absence of visual clues and an explanation, the sound of a HCP typing could be misinterpreted as lack of interest; patients could not see concern or interest in a phone consultation, so they valued the HCP verbally acknowledging that they had noted down a particular symptom or concern; patients often perceived telephone consultations as rushed, whilst HCPs needed to ask more questions to replace what would be obvious in a F2F consultation.
3.5‘Operational Efficiency’
This theme highlighted the systemic and logistical barriers that undermined the effectiveness of remote care and eroded confidence in the system.
3.5.1Administrative friction
Patients reported receiving short-notice or repeatedly altered appointments, sometimes in the wrong modality; re-booking could be opaque, and cancellations could create long gaps between support and care, followed by an appointment cluster. Not all patients received warning of on-the-day appointment delays, which proved especially difficult for those with bladder issues, limited privacy or work constraints. Some units have solved this problem for their patients by using the chat function to warn of any delays in real-time.
Clinicians reported similar frustrations. If a video link had not been issued, the first 10–15 minutes were lost to phoning the patient, emailing a link and coaching them onto the platform. Out-of-date contact details compounded delays. Streamlined booking, automatic reminders and reliable contact data were seen as low-cost fixes that could raise confidence in virtual care.
3.5.2Digital infrastructure
Many clinicians were frustrated at digital infrastructure quality and reliability, with ‘clunky’ laptops, multiple platforms and slow, bolt-on upgrades that lengthened every task. Processing a single consultation could require up to ‘28 mouse-clicks’; often over-booked clinics had to be juggled manually because the scheduling software simply reported that clinics were full.
3.5.3Time for innovation
Clinicians were keen to build patient-facing materials, eg videos, portal pages, “what to expect” guides, or visual ‘walk-throughs’, that would set realistic expectations and show how remote visits fit into holistic care. Yet most felt too stretched to create or update these tools in the absence of protected time.
4.Discussion
This study presents REMOTE-Neuro, a national, co-produced framework of stakeholder-informed recommendations to support more patient-centred and effective remote neurology care. It synthesises over 4,000 patient, carer and clinician responses, one of the largest multi-stakeholder datasets within a single specialty. The findings highlight where communication and support systems can be strengthened to improve the quality, responsiveness and equity of remote care, benefiting patients and reducing inefficiencies while supporting clinician wellbeing and professional development.
Patient-centred care
Flexible choice of appointment modalities was a major theme. While prior studies have recognised the benefits of remote consultations for patients with mobility issues or logistical barriers, 3,6,7,16–20 our findings extend this by highlighting neurology-specific challenges, such as the difficulty describing complex symptoms without visual clues. Many patients felt that a binary offer of telephone versus F2F was inadequate. Instead, they emphasised the value of flexible, hybrid options (e.g. video, telephone, digital, in-person), which could accommodate fluctuating symptoms, personal communication needs, and modality preferences.
Our data also surfaced a relatively unexplored but crucial finding: that some patients may perceive remote appointments as inherently less valuable. This legitimacy gap has important implications, as it may deter engagement or reduce the quality of information shared, aligning with implementation-science concerns around coherence and credibility 21,22. Our co-production workshops recommended co-producing materials that normalise remote care and support self-efficacy, particularly for those with lower health or digital literacy. This approach has worked well for surgical schools. 23–25
Importantly, despite increasing familiarity with remote care, there were persistent and unresolved concerns. Patients still worry about quality of care, privacy and equity, issues long documented both in neurology and across other specialities.3,6,7,16–20 Patients often took pragmatic responsibility for managing the limitations of remote care. However, expecting patients to manage technical setup, ensure privacy and troubleshoot issues in real-time shifts the burden from system to individual and has the potential to exacerbate existing health inequalities. REMOTE-Neuro aligns with NHS guidance26 by proposing routine audits that help measure these burdens, supporting responsive service improvement.
Neurology and specialist area considerations
Clinicians supported choice, but this had to be clinically appropriate. Consistent with smaller studies,1,4,7,20 our data revealed a clear consensus that most new patients should be seen F2F, while many follow-ups could be seen remotely. Neurological problems such as headache, seizures, TLOC and sleep disorders were considered potentially suitable for a remote appointment, even for a new patient referral, provided triage and follow-up systems were robust.
However, beyond these general trends, there was less consensus on condition-specific criteria for remote versus F2F care. As such, there is a clear need to develop more detailed guidance for each neurological subspecialty.
Clinical safety and quality
Triage was identified as the critical foundation but was often described as time-consuming and inconsistently supported by formal structures or job plans. Given the broad consensus around triage, a standardised framework, exploring automation for low-complexity, could streamline processes, reduce variability, support safety and alleviate clinician burden.27 Equally essential are access to private spaces for remote consultations and clear pathways for timely escalation to F2F care. These factors ensure clinical safety but also preserve trust, communication quality, and continuity of care.
Capacity and sustainability
Improving remote care requires investment not only in technology, but also in people. Upgrading IT infrastructure, streamlining scheduling systems, and ensuring access to appropriate consultation spaces for all clinicians could reduce missed appointments (currently averaging 11.7% in neurology²³) while also easing pressure on an overstretched workforce. These changes are especially urgent given rising concerns about burnout and attrition.28 Safeguarding training and teaching opportunities for the present and future workforce will require protected time to create and update patient resources, clarify competencies, and engage in ongoing professional development, core requirements for sustainable transformation and long-term safety.
Operational efficiency
Despite national initiatives,29 digital disparities and fragmented infrastructure continue to undermine the effectiveness of remote care, with wide variation across the country. Our findings show that practical challenges, such as outdated platforms, inefficient workflows, poorly integrated appointment systems, and limited private spaces, interact to create systemic friction that erodes trust and demoralises both patients and clinicians.
These barriers are not simply logistical; they also have direct implications for clinical safety and the perceived value of remote consultations. In turn, this reduces appointment effectiveness and risks undermining wider system goals, including efforts to reduce unnecessary outpatient visits.
Limitations
This study has several limitations. First, participants may over-represent digitally engaged or motivated individuals. Inconsistent demographic information across datasets limited subgroup analysis. Additionally, some perspectives may reflect pandemic-specific conditions, although our recent local validation confirmed continuing relevance.
5.Conclusion
REMOTE-Neuro is a co-produced, stakeholder-informed framework to optimise neurology outpatient services. Although developed within neurology, its structure and methodology provide a transferable model for other specialties navigating hybrid models of care.
Our data also highlight an important and under-recognised challenge: patient perceptions of value. If remote care is seen as second-tier, this will impact trust, engagement and equity. Exploring and addressing this potential perception gap is likely to be just as vital as any technical upgrade.
The framework offers practical guidance for clinicians, service leads, and commissioners. Even modest actions, such as offering greater choice of appointment format, ensuring private spaces for remote consultations, and sharing co-produced patient information, can improve trust, clinician wellbeing, and operational efficiency. Rather than serving as a rigid checklist, REMOTE-Neuro is designed to be adapted through local co-design and aligned with available infrastructure. It prioritises what matters most to staff and patients to enable continuous, meaningful quality improvement over time.
Future work should examine value perceptions across contexts, evaluate implementation and assess the impact of rapid-access F2F appointments and automated triage pathways on safety and engagement.
Abbreviations
- Association of British Neurologists
- ABN
- Did not attend
- DNA
- Face-to-face
- F2F
- Healthcare professional
- HCP
- The Neurological Alliance
- NA
- Transient loss of consciousness
- TLOC
Funding
University Hospital Southampton Small Grant Scheme award (D3 – GRT0709).
Declaration of competing interest
The authors report no declarations of interest.
Ethics approval
East Midlands - Derby Research Ethics Committee (IRAS 287057).
Data availability
The data that support the findings of this study are available from The Neurological Alliance and the Association of British Neurologists, but restrictions apply to the availability of these data, which were used under licence for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of The Neurological Alliance and the Association of British Neurologists.
Acknowledgements
With sincere thanks to the patients, carers, and healthcare professionals who contributed their insights and time to this project. We are grateful to the Neurological Alliance and Association of British Neurologists who shared their surveys with us and our PPI contributors, whose collaboration shaped the design, analysis, and outputs of this study.