1. Introduction
1.1. The systemic impact of long-COVID
The COVID-19 pandemic was one of the most significant global health crises of the 21st century, resulting in nearly 200 million infections and approximately 4 million deaths worldwide between December 2019 and July 2021 (Reference Joshee, Vatti and ChangJoshee et al., 2022). Although the COVID-19 virus does share transmission pathways and some clinical features with influenza (World Health Organization [WHO], 2024), it differs in its potential for prolonged, multi-system effects. Persistent post-infection symptoms, collectively termed long-covid, have raised concerns regarding long-term morbidity and health system capacity. The National Institute for Health and Care Excellence (NICE, 2024) defines long-covid as “signs and symptoms that develop during or after infection, persist beyond 12 weeks, and cannot be explained by an alternative diagnosis”. More than 200 symptoms have been identified, contributing to heterogeneous clinical presentations and complex care needs (Reference Davis, Assaf, McCorkell, Wei, Low, Re’em, Redfield, Austin and AkramiDavis et al., 2021).
Long-covid was initially recognised through patient advocacy and social media, highlighting a disconnect between patient experience and formal clinical recognition. By 2023, approximately 1.9 million individuals in the United Kingdom (UK) reported ongoing symptoms, with 16.3% experiencing symptoms beyond 18 weeks (Reference Hastie, Lowe, McAuley, Mills, Winter, Black, Scott, O’Donnell, Blane, Browne, Ibbotson and PellHastie et al., 2023). Early clinical uncertainty and the frequent attribution of symptoms to psychological issues delayed diagnosis and treatment, reflecting limited understanding of its multifactorial pathophysiology, including immune dysregulation, mitochondrial dysfunction, and multi-organ involvement (Reference Peluso and DeeksPeluso and Deeks, 2024). Prior to NICE guidance, inconsistent definitions and triage pathways resulted in fragmented referrals and variable service provision across the National Health Service (NHS). Within the Cynefin Framework, this response can be characterised as operating within a “Complex Domain,” where uncertainty requires adaptive and iterative solutions to unpredictable challenges (Reference Snowden and BooneSnowden and Boone, 2007).
The burden of long-covid extends beyond clinical complexity to substantial healthcare utilisation and socioeconomic impact. Patients with long-covid have been reported to require approximately 30 healthcare visits annually compared with 16 visits among unaffected populations, with associated costs of around £2,500 versus £1,500 per patient (Reference Lin, Henderson, Carlile, Dillingham, Butler-Cole, Marks, Briggs, Jit, Tomlinson, Bates, Parry, Bacon, Goldacre, Mehrkar, MacKenna, Eggo and HerrettLin et al., 2024), contributing an estimated £23 million in additional NHS expenditure (Reference Tufts, Guan, Zemedikun, Subramanian, Gokhale, Myles, Williams, Marshall, Calvert, Matthews, Nirantharakumar, Jackson and HaroonTufts et al., 2023). Despite increased public funding and the development of multidisciplinary services, regional disparities and inequities persist, disproportionately affecting lower-income and minority groups (NHS England, 2023). Furthermore, long-covid significantly reduces quality of life and labour participation, with 23.3% of affected individuals being economically inactive and 45% reporting reduced working hours (Reference Davis, Assaf, McCorkell, Wei, Low, Re’em, Redfield, Austin and AkramiDavis et al., 2021). Hence, addressing these systemic challenges requires a systems-based approach; principles central to Engineering Better Care (EBC) that integrate people, design, and risk, offer a framework for developing equitable and resilient long-term care models (Reference Clarkson, Bogle, Dean, Tooley, Trewby and VaughanClarkson et al., 2017).
2. Key research question
The discussion in the introduction has subsequently given rise to the key research question:
“What role does a systems and design engineering approach have in exploring the current service pathways of long-covid clinics in the UK?”
2.1. Sub-questions
The key question further raises three sub questions that the study will address to answer the key question:
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1. What is a systems approach in healthcare?
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2. How are current long-covid clinics being delivered?
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3. What is the role of stakeholders in the future development of long-covid clinics?
3. Literature review
A systems approach in healthcare applies structured engineering and design principles to understand and improve complex health services by examining interactions between people, processes, technologies, and organisational contexts, rather than isolated interventions (Reference Hossain and JaradatHossain and Jaradat, 2018). The EBC framework (Reference Clarkson, Bogle, Dean, Tooley, Trewby and VaughanClarkson et al., 2017) conceptualises this through integration of people, systems, design, and risk, emphasising the need to first understand problems within their real-world context before implementing solutions.
Literature suggests that when this stage is overlooked, responses become fragmented and reactive, as seen during the COVID-19 pandemic where ad hoc service redesign and telemedicine adoption created inconsistencies and operational challenges (Reference Soong, Wong, O’Connor, Marinova, Fisher and BellSoong et al., 2021). In contrast, structured redesign grounded in systems understanding, such as targeted fracture triage pathways, has improved resource use and patient flow (Reference White, Mackenzie, Carter, Jefferies, Prescott, Duckworth and KeatingWhite et al., 2017). Such approaches rely on iterative questioning and implementation frameworks to support adoption and sustained behavioural change (Reference NeirottiNeirotti, 2021).
Central to a systems approach is co-design, recognising healthcare as a socio-technical system requiring collaboration between patients, clinicians, policymakers, and other stakeholders to manage complexity, risk, and organisational constraints (Reference Banbury, Pedell, Parkinson and ByrneBanbury et al., 2021). However, existing literature highlights persistent barriers, including hierarchical structures, limited stakeholder inclusion, and bias within decision-making processes (Reference Sambri, Fiore, Tedeschi and De PaolisSambri et al., 2022; Reference NormanNorman, 1986).
Consequently, sustaining system improvements requires coordinated pathways, accessible services, and effective self-management strategies. However, implementation remains inconsistent due to poor integration into workflows and inequitable access, particularly within emerging services like long-covid clinics (Reference Sunkersing, Ramasawmy, Alwan, Clutterbuck, Mu, Horstmanshof, Banerjee and HeightmanSunkersing et al., 2024; Reference Williams, Beadle, Williams, Master and CasarinWilliams et al., 2024). Hence, key gaps remain in pathway modelling, inclusive stakeholder co-design, and systematic service improvement evaluation. As a result, addressing these gaps provides the rationale for this research, which applies a systems-based methodology to explore long-covid services, and propose optimisation strategies to develop a more coordinated, accessible, and resilient system.
4. Methodology
4.1. Study design
A qualitative study design was adopted. Specifically, semi-structured interviews were selected to capture diverse stakeholder perspectives and generate novel insights within existing service structures. This flexible approach facilitated open discussion, supported rapport-building, and enabled participants to shape the conversation, which are essential elements of co-design (Reference KaratsareasKaratsareas, 2022). Interview topic guides were structured around the EBC framework’s colour-coded domains to allow systematic exploration of interconnected service components (Figure 1) and the Theoretical Domains Framework to explore behavioural, social, and environmental influences on service delivery (Reference Atkins, Francis, Islam, O’Connor, Patey, Ivers, Foy, Duncan, Colquhoun, Grimshaw, Lawton and MichieAtkins et al., 2017). Based on the literature review, three focus areas were prioritised: pathway modelling, stakeholder co-design, and service improvement. Separate topic guides were designed for clinicians and patients to ensure contextual relevance and sensitivity to differing perspectives.
Spiral order of questions in the Engineering Better Care framework (Reference Clarkson, Bogle, Dean, Tooley, Trewby and VaughanClarkson et al., 2017); Blue: People, Green: Systems, Red: Design, Orange: Risk, Purple: Management; NB: The questions shown relate to each domain of the framework and are meant to be addressed during each phase of the improvement process
Figure 1 Long description
A diagram representing the Engineering Better Care framework with a spiral order of questions categorized into different domains. The spiral is divided into concentric circles with questions related to various aspects of system improvement. The questions are color-coded: Blue for People, Green for Systems, Red for Design, Orange for Risk, and Purple for Management. The central question is 'What are the elements?' moving outward through layers addressing needs, performance, stakeholders, and management. Each layer represents a different domain of the framework and is meant to be addressed during each phase of the improvement process.
4.2. Data collection and analysis
The topic guides were reviewed by a Research Advisory Group, comprising two clinicians and two individuals with long-covid, who provided feedback to enhance clarity, comprehensiveness, and contextual fit. Two pilot interviews, one with a clinician and one with a patient further tested feasibility, leading to minor refinements for precision.
A purposive sampling strategy was used to recruit 10–15 participants, ensuring diversity of perspectives within the study timeframe. Recruitment occurred through professional and online networks, including Long COVID Physio and Long COVID Support. Participants received study information and provided written consent before taking part in Microsoft Teams interviews. Each interview followed the refined topic guide, was audio-recorded, and transcribed verbatim.
Transcripts were verified against recordings for accuracy and imported into NVivo 15 for coding. Field notes captured contextual insights and reflexive observations. Model-Based Systems Engineering (MBSE) supported mapping of interconnections within service processes (Reference Madni and SieversMadni & Sievers, 2018), while thematic analysis identified recurring patterns and meanings (Reference Braun and ClarkeBraun & Clarke, 2006). Subsequently, the senior researcher independently reviewed coded transcripts to enhance rigour and minimise bias. Finally, the integration of MBSE and thematic findings produced a swimlane diagram that illustrated long-covid clinic operations and stakeholder experiences.
5. Results
5.1. Participant demographics
A total of six clinicians and nine patients participated in the study. Clinicians, primarily physiotherapists and occupational therapists, represented three UK regions, with most based in London; half also served as clinical leads. Patient participants, drawn from nine regions across the UK, had a median age of 56 years and an average of 2.5 years since long-covid diagnosis, representing diverse professional backgrounds from government agencies to customer service.
5.2. Long-covid swimlane diagram
Figure 2 illustrates the swimlane diagram developed from the 15 interviews, mapping the general patient pathway in bold alongside its variations in colour. The diagram identifies key influences and decision points across four sequential phases: Identification, Response, Assistance, and Resolution. Each phase outlines critical pathway components, supported by relevant themes and illustrative quotations.
Swimlane diagram of the care pathways in long-covid clinics
5.2.1. Identification (primary care)
Patients’ initial engagement with long-covid services was influenced by symptom severity, health literacy, and financial capacity. Many self-diagnosed long-covid through social media or academic sources before consulting their General Practitioner (GP). Experiences varied; while some GPs validated symptoms and initiated investigations, others dismissed patients’ concerns, resulting in frustration and self-doubt.
“Yeah, there was no support… the doctor told me there is nothing, no new medication or cure.” (Patient 3)
Nevertheless, receiving a formal diagnosis evoked mixed emotions, with relief from validation alongside anxiety about uncertainty and prognosis.
“It’s good to have a name for it… I thought this will rapidly turn around and we’ll be good in a couple of weeks.” (Patient 8)
Patients who were unable to obtain a referral often turned to self-management strategies or sought private care, encountering financial strain and emotional frustration.
“We’re looking to sell the house to fund treatment… my GP is refusing to answer.” (Patient 6)
A caveat to the GP pathway was self-referral routes. However, this was only offered in certain regions. Limited awareness and inconsistent policy implementation reduced uptake, reinforcing the GP’s role as gatekeeper and coordinator of care. Attitudes toward long-covid remained inconsistent, with some clinicians demonstrating scepticism due to the evolving nature of evidence, leaving patients feeling invalidated and “gaslit.”
“My life is ruined… it’s not living, it is surviving.” (Patient 3)
Patient advocacy frequently led to conflict within care pathways, with some participants escalating complaints to Members of Parliament to secure referrals to clinics and follow-up services.
“I had to fight my GP twice… I had to write to my MP to help me get into a clinic.” (Patient 9)
However, when GPs did engage with evolving literature, attitudes shifted toward collaborative and empathetic care, improving patient trust and outcomes.
“He completely changed his attitude… he educated himself so that is a positive.” (Patient 7)
5.2.2. Response (secondary care)
Long-covid clinics varied in resources but shared a rehabilitation-centred, multidisciplinary ethos. Following referral, patients underwent structured assessments to determine symptom severity and treatment priorities.
“It’s a 90-minute assessment…to identify severity and red flags.” (Clinician 3)
Care plans were co-developed through collaboration between patients and clinicians. These were underpinned by empathy and patient partnership that contrasted with the more hierarchical GP dynamic.
“I was probably on the fence…but it helps to empathise and understand how much these people are struggling.” (Clinician 1)
Patients valued this transparency and shared decision-making, reporting feelings of validation and safety through clear guidance for daily management and emergency situations.
“They (long-covid clinicians) were very knowledgeable. It’s still a developing field, so they’ve tried forearming themselves with enough information and keep up to date with what’s going on.” (Clinician 6)
Services focused on fatigue, sleep, breathing, and pacing strategies, typically delivered through eight-week programmes with flexible virtual options. Clinics also prioritised mental health support, including 24-hour helplines and crisis contacts, alongside ongoing monitoring. These “safety nets” enabled clinicians to adapt care dynamically according to patient care need.
“If someone still benefits from the service, I’ll keep them on as long as possible.” (Clinician 4)
“I have a rescue pack… if things worsen, my GP calls the ambulance.” (Patient 9)
5.2.3. Assistance (tertiary care)
Clinics primarily referred more complex cases to specialist services, including cardiology, radiology, and ME/CFS specialists, enabling expedited access and more timely care.
“We present cases where we suspect CFS… it’s a lot faster than if they went through the GP.” (Clinician 1)
Social and community services addressed broader occupational, financial, and caregiving challenges faced by patients. However, these operated as separate pathways from the standard clinical routes, requiring patients to navigate additional processes and timelines.
“We can refer to social services… maybe some respite options and carers’ support.” (Clinician 1)
Families played a vital role in providing emotional and physical support; but could also perpetuate invalidation.
“They could liaise with doctors and explain this was real.” (Patient 9)
“Even my loved ones thought, you can’t still be ill.” (Patient 9)
To support recovery, patients frequently adopted digital self-management tools, including wearables and symptom-tracking apps like Visible, to monitor triggers and manage energy levels.
“I created a timesheet for my pacing… every hour accounted for.” (Patient 8)
While clinicians acknowledged these benefits of these technologies, the lack of NHS endorsement limited their integration into care and required cautious recommendation.
“The Visible app is really good… but it’s not on the NHS list.” (Clinician 1)
Despite these supportive elements, three major barriers emerged:
Firstly, funding insecurity and uncertainty limited staffing and service development.
“We’ve been told we’re going to be shut down… there’s no scope for improvement.” (Clinician 4)
Secondly, geographical inaccessibility remained a challenge, as travel often exacerbated fatigue and limited attendance.
“Travel can be a barrier… people have families and work.” (Clinician 4)
Finally, virtual consultations were associated with reduced engagement, making it more difficult for clinicians to assess emotional cues and risk
“They talk about self-harm… it’s hard to see emotions online.” (Clinician 3)
5.2.4. Resolution (discharge)
Despite these challenges, most patients reported increased confidence in managing their condition at discharge, adopting personalised routines that incorporated pacing, medication, dietary adjustments, and stress reduction strategies, thereby validating the management approaches implemented within current long-covid clinics.
“Intermittent fasting, decent sleep… just try to minimise stress.” (Patient 9)
Nevertheless, fragmented communication between services and limited follow-up impacted continuity of care, with both patients and clinicians emphasising the need for more coordinated, empathetic, and sustainable service models.
“It’s just the communication between clinics — that’s the big thing.” (Patient 2)
“The GP had to put me through all the hoops… nothing happened for months.” (Patient 8)
Ultimately, many patients described finding meaning in their experiences, redefining recovery not as a return to pre-illness health but as regaining purpose and functional quality of life. These expressions of gratitude and resilience reflected the complex lived experience of long-covid and its ongoing impact.
“My goal is to calm down the MCAS… so I can eat socially.” (Patient 7)
6. Discussion
6.1. Healthcare professionals and attitudes
The study revealed contrasting attitudes among healthcare professionals toward long-covid. Drawing on attitudinal theory (Reference Eagly and ChaikenEagly & Chaiken, 1993), early scepticism among GPs stemmed from limited epistemic justification—long-covid lacked an established diagnostic and treatment framework. Patients frequently described these encounters as “dismissive” or “gaslighting,” whereas long-covid clinicians were perceived as empathetic and informed. The distinction was less about expertise than humility: an openness to uncertainty and a commitment to ongoing learning. This iterative process of exposure, reflection, and adaptation allowed both GPs and long-covid clinicians to provide more validating and collaborative care.
6.2. The patient–clinician relationship
Findings highlighted two dominant relational models: a paternalistic or agency-based approach, commonly observed in primary care, and a shared decision-making model more prevalent within long-covid clinics. The agency model, rooted in asymmetric knowledge structures, often reinforced power imbalances by positioning GPs as gatekeepers to care. In contrast, shared decision-making enabled the co-creation of care plans and strengthened patients’ sense of validation, aligning with participant preferences for co-design and partnership. Nevertheless, recognising systemic pressures on GPs, including performance targets and administrative demands, this discussion adopts an enactive perspective, conceptualising patients and clinicians as interdependent actors who co-create meaning through interaction (Reference Lozada, Garcia, Chaoul and D’AdamoLozada et al., 2024). Within this framework, embracing the “expert patient” role repositions individuals as active contributors whose lived experience complements clinical expertise. Extending this principle to self-referral pathways may therefore enhance accessibility while reducing GP workload and improving system efficiency.
6.3. Service design and system integration
Service leads reported limited national guidance during the establishment of long-covid clinics, prompting a process of creative design (Reference Dorst and CrossDorst & Cross, 2001). Two principal models emerged: virtual and face-to-face clinics, with the latter enabling stronger integration of diagnostic and specialist services. However, ongoing funding constraints appear to limit the scalability of this model. One solution is service consolidation across overlapping chronic conditions, like ME/CFS, to enable shared resources and expertise. This aligns with NHS integrated care system priorities and population-health strategies, where data-driven decision-making and partnerships with community agencies help prioritise clinical need and reduce health inequalities (Reference Lake, Mishra and ConroyLake et al., 2023). Pooling resources may therefore reduce variation in care, improve efficiency, and support long-term sustainability of long-covid services within broader chronic disease frameworks.
6.4. Digital monitoring and personalised safety-netting
Patients reported using wearable devices and health-tracking applications to monitor heart rate, oxygen saturation, and fatigue patterns, with literature supporting their accuracy and value for continuous monitoring (Reference Jafleh, Alnaqbi, Almaeeni, Faqeeh, Alzaabi and Al ZamanJafleh et al., 2024). These tools promote patient autonomy and facilitate early detection of deterioration, aligning with NHS priorities for digitally connected care. Complementary technologies, such as pendant alarms originally developed for geriatric fall-prevention systems (Reference Johnston, Grimmer-Somers and SutherlandJohnston et al., 2010), may further enhance safety for long-covid patients, particularly during flare-ups associated with reduced functional capacity or for those living alone. While long-covid clinics currently provide patient information packs, safety-netting could be strengthened through personalised documentation outlining symptom thresholds, monitoring parameters, and clear escalation pathways. Such approaches support the “expert patient” paradigm and align with NIHR (2023) guidance on tailored safety-netting, enabling iterative updates with clinical oversight to promote dynamic self-management while reducing unnecessary service utilisation.
This discussion integrates philosophical, sociological, and systems engineering perspectives to inform practical reforms, as illustrated in the revised and more streamlined swimlane diagram (Figure 3). At its core is the recognition of the expert patient and the promotion of humility and stakeholder co-design within clinical practice. By leveraging technological integration and fostering interdisciplinary collaboration, care pathways can be streamlined, risks mitigated, and equity enhanced. These principles advance the NHS’s vision of a patient-centred, adaptive system, where following the right course of action becomes the simplest path for both patients and professionals.
6.5. A new pathway
The newly proposed swimlane diagram for long-covid care pathways
7. Strengths and limitations
7.1. Strengths
To address the first sub-question “What is a systems approach in healthcare?” this study conducted a literature review of systems engineering principles within healthcare. The EBC framework and MBSE were identified as suitable approaches to examine the second sub-question, “How are current long-COVID clinics being delivered?” Their integration enabled the development of a swimlane diagram outlining patient pathways and service variations, providing a structured means of analysing interdependencies and managing system complexity.
A key finding was the central role of the patient–clinician relationship as a defining feature of “soft” systems (Reference Rittel and WebberRittel & Webber, 1973). These interactions shape service effectiveness and patient engagement, highlighting communication and empathy as critical drivers of system-level success. The study also emphasised the importance of risk management in home-based care. Given the variability of long-COVID symptoms, integrating digital health technologies with clinical oversight emerged as a promising strategy to enhance safety, adaptability, and resilience. Collectively, these insights offer a systems-based understanding of long-covid services that can inform service redesign, policy development, and improvements in patient quality of life.
7.2. Limitations
The third sub-question “What is the role of stakeholders in the future development of long-covid clinics?” was only partially addressed. While stakeholder co-design was identified as essential for future innovation, the potential for recall bias must be considered. Participants were asked to reflect on experiences from several months or years prior, and cognitive factors such as brain fog or time lapse may have affected recollection accuracy (Reference AlthubaitiAlthubaiti, 2016). This may have led to over or underestimation of associations, reducing data robustness and obscuring key patterns.
A further limitation relates to the generalisability of findings across the multidisciplinary team (MDT). Despite efforts to recruit a diverse sample, physiotherapists and occupational therapists formed the majority of respondents. Variations in scope of practice and role perceptions among MDT members suggest that professional experiences may differ substantially. Consequently, the findings may not fully capture the perspectives of all healthcare professionals involved in long-covid care, thereby limiting external validity (Reference ChenChen et al., 2022).
8. Future research
This study highlighted the value of a systems approach in understanding long-covid service pathways, completing the “Understand” phase of the EBC methodology. As stakeholder engagement emerged as a key limitation, the next step is to advance to the “Design” phase, involving all relevant stakeholders in MBSE-based validation to refine and optimise the system model. Future research should also explore integrating technologies and service models from comparable chronic conditions to improve efficiency, scalability, and sustainability. Ultimately, a co-designed, stakeholder led service framework that supports self-monitoring and risk management could empower patients, reduce pressure on acute services, and enhance long-term recovery.
9. Conclusion
This study explored the role of a systems and design engineering approach in understanding long-covid clinic pathways in the UK, using the EBC framework to provide a structured analysis of service complexity. Given the limited evidence base and the NHS’s largely reactive response, applying the EBC framework revealed variations in resources, service delivery, and patient experiences. By examining the dimensions of People, Design, System, and Risk, the study identified key areas for iterative improvement and the development of more proactive, system-informed models of long-covid care.
Acknowledgements
The researcher would like to thank all the volunteers, both patient and clinician for giving up their time to participate in the interviews.
Open access
