Protocol: How can people with social care needs be supported through processes of digital care navigation to access remote primary care? A multi-site case study in UK general practice of remote care as the ‘new normal’.

Care navigation in UK policy

Care navigation, rather than patient navigation, is the term used in the UK. Care navigation has been associated with three interrelated policy concerns in the UK: primary care capacity and access (General Practice Forward View, 2016), integration of care for patients with multiple and complex needs (The NHS Long Term Plan, 2019), and support for people to access non-medical care, which has become known as social prescribing (Tierney et al., 2019). Care navigation is understood by Health Education England as an interventional process rather than a specific role or post and something that should be part of all staff work ethos and duties. Care navigation, according to Health Education England, can be offered in three tiers (essential, enhanced, expert) according to the complexity of the patient and the skills of the navigator (Care Navigation: A Competency Framework, 2016). Digital care navigation has become a more recent focus of concern (Digital inclusion guide for health and social care, 2019).

The 2016 General Practice Forward View (GPFV) set out new investment in primary care in England in recognition of comparative historic underfunding compared to hospital services, which had resulted in increasing workforce pressures and concerns from patients about access to primary care. An earlier policy initiative, the Prime Minister’s Challenge Fund, 2013 (which became known as the GP Access Fund) had provided investment for pilot projects to test out ways of extending or enhancing access to primary care such as extended opening hours and care navigation support. In the GPFV, care navigation was presented as a way of releasing capacity in primary care, with £45 million extra funding available nationally over 5 years for every GP practice to train and support their reception and clerical staff to play a greater role in care navigation. The intention was that these staff would do more patient signposting and handle clinical paperwork, thereby freeing up GP time.

Supporting patients to navigate through complex systems has been a feature of policies and practices seeking to integrate care for certain patient groups across multiple services and settings. Examples can be found in case studies from Tower Hamlets, where care navigators aimed to prevent A&E attendances and hospital admissions for patients with complex health and social needs and Camden, where care navigation supported patients across the stroke pathway (Mulimba & Prus, 2016). Such better integrated, or joined-up care, aligns with the concept of more personalised care in the 2019 NHS Long Term Plan (The NHS Long Term Plan, 2019).

In policy terms, care navigation is also used to describe support for people to access non-medical services that are important to people’s health and wellbeing. Various terms are used to describe this work, with a range of activities performed. In primary care settings, examples include community link workers in Scotland (Community Link Worker Initiatives in Primary Care: Key Learning From UK Studies, 2019) who provide welfare advice amongst other forms of support and social prescribers who signpost patients to local support and services. A 2019 survey of English CCGs found 75 different titles used to describe this kind of work (including care navigator, social prescriber, link worker, community connector and sign-poster), which was performed by a range of roles in different organisations (including general practice receptionists and practice managers, specific paid roles and, in one case, volunteers) (Tierney et al., 2019).

A focus on digital care navigation can be traced from general policy ambitions for increased digitally-enabled primary care, as set out in NHS Long Term Plan (2019) and the Scottish Government’s 2018 Digital health and care strategy (Scotland's Digital Health and Care Strategy: Enabling, Connecting and Empowering, 2018). Specific policy plans for NHS action on digital inclusion were outlined in 2022 by NHS England (A plan for digital health and social care, 2022). In practice, digital support is added to existing roles and responsibilities, for example NHS Digital (2019) recommend local practitioners serve as digital champions and the NHS Pathfinder project has demonstrated how digital inclusion can be added to social prescribing (Digital inclusion guide for health and social care, 2019). Digital support is now recognised as part of care navigation, and The Good Things Foundation (a national charity focused on addressing the digital divide) suggest that digital support is best delivered by trusted people within communities (Digital Inclusion in Health and Care: Lessons learned from the NHS Widening Digital Participation Programme, 2020).

Whilst the policy emphasis has differed across the nations of the UK (for example, Scotland has prioritised technology enabled care since its eHealth Strategy of 2008–2011, and NHS England has addressed primary care access in the General Practice Forward View, 2016), there is evidence of care navigation in each of the four nations. In Wales, the General Medical Services contract in 2022 requires GPs to provide care navigation for all patients and care navigation training for all patient facing staff (Guidance for the GMS contract: Access Commitment 2022/23, 2022). Examples of care navigation in Northern Ireland include a training programme for general practice staff and partnerships with the voluntary sector to create community navigators for older people (Health and Social Care Board, 2019; Age NI, 2022).

Digital care navigation research

There is little research into digital care navigation, and none that specifically examines digital care navigation for the potentially marginalised groups in the UK that are the focus of this study. There is a body of research on primary care access for marginalised groups, including studies of interventions and experiences of homeless people (Gunner et al., 2019), refugees and migrants (Scott et al., 2022) and people living in deprived neighbourhoods in the UK seeking care during the pandemic (Norman et al., 2019). This research includes evaluation of interventions such as outreach services for homeless people (Clark et al., 2020; Kopanitsa et al., 2023) and theorisation of the burden of non-communicable diseases and access to health care for migrants and refugees in terms of social capital (Tan et al., 2021). There is also a growing body of research into social prescribing, including link workers’ perspectives on patient engagement in social prescribing (Wildman et al., 2019) and the adoption of care navigation in primary care in the UK (Tierney et al., 2019). However, these studies do not specifically address digital or remote access and navigation.

Where remote care has been studied, such as evaluations of the use of telephone triage (Newbould et al., 2017) and signposting (Siddiqui et al., 2017), there has been a significant focus on evaluating the effect on managing demand for primary care rather than on access for marginalised groups. There are studies of digital interventions that have identified the potential for improved coordination of care, such as ehealth for older adults living at home people (Fjellså et al., 2022) and the management of high intensity users of primary care through an online platform (Leung & Qureshi, 2022). Whilst concerns about digitally supporting disadvantaged and vulnerable individuals have been raised by research into social prescribing during the pandemic (Fixsen et al., 2022), there remains a gap in evidence about how this digital support is practiced. This study will contribute to addressing that gap.

Aims, objectives, and research questions

The study has two main aims:

The objectives are to explore: 1) how digital support fits (or not) with existing roles concerned with patient access within general practices, and 2) the interplay between contractually agreed care packages, additional digital support and care navigation that is found connected to general practices.

The study aims to answer the research question: How can people with social care needs be supported, through processes of care navigation, to access primary care remotely?

Study design

This is a qualitative multi-site study with a co-design workshop. The study will explore coordination and delivery of digital care navigation, examining how local, patient and service contexts interplay with digital support by pursuing the themes set out in Box 2. Digital care navigation for patients accessing the 11 GP practices recruited to the linked RBD2 study (Box 1) will be studied through a combination of interviews and observations. Stakeholder perspectives on digital care navigation will, together with findings from the study of practices of digital care navigation, inform a co-design workshop to generate resources and guidance for digital care navigators.

The study focuses on care navigation for three groups that are potentially marginalised by the expansion of remote, technology and internet-enabled, primary care: homeless and insecurely housed people, older adults in receipt of domiciliary care, and people living in care homes. Whilst these people could benefit from remote consulting, as they might struggle to attend in-person appointments, they are also likely to experience digital exclusion and find the health and social care system difficult to navigate. Further, they have regular contact with staff who can potentially be involved in providing them with support to access remote care and thus act as digital care navigators. Embedded researchers in the RbD2 study (Box 1) will identify such people (e.g. staff of social care providers including care homes, domiciliary care agencies, housing/homelessness services) who support patients to access remote care. We aim to recruit 20 of these care navigators across the 11 practices.

Go-along interviews. Practices of care navigation will be studied through 20 go-along (in-person or remote) interviews with people involved in supporting patients to access remote primary care (care navigators).

The in-situ go-along method enables researchers to immerse in the world of people in supporting roles who have been integrating digital support alongside their day-to-day responsibilities (Carpiano, 2009). The approach will be carried out either synchronously and asynchronously, according to feasibility and preference of each interviewee. Synchronous go-along interviews will involve a researcher joining a care navigator in-person or via a video link at the point when digital support is being provided. Semi-structured interviews with the care navigator will be conducted either on the same day as the observation or as a follow-up. Asynchronous go-along interviews are a virtual adaptation of the go-along interview aimed at eliciting quality multi-sensory familiarity with people’s contexts (Shareck et al., 2021). These entail care navigators taking photographs, notes and voice memos as they carry out their work to elucidate on the environmental, patient and service contexts. Photographs will, for example, show the room or equipment used rather than the patient as they are supported to connect to a remote consultation. Documents and recordings will then be shared by the care navigator during a virtual research interview and will serve as prompts for discussion with a researcher. Observations and interviews will help to identify what work works well when supporting patients before during and after remote consultations, the technical challenges, and the digital capabilities, confidence and resources of care navigators to digitally support patients,

Stakeholder interviews. Six ‘elite’ stakeholder (in-person or video) interviews will be conducted with people who have strategic knowledge of social care issues in relation to digital health and remote care. The aim is to understand the broader context for care navigation, therefore interviewees will be sampled from stakeholders from key agencies involved in social care and housing/homelessness. The pool of stakeholders will be informed by relationships forged in RbD1 with local and national policy makers (e.g. NHS England and Improvement, Health Education England, Scottish and Welsh governments) and snowballing sampling (asking interviewees to nominate another senior stakeholder). Maximum variety of interviewees will be sought across the areas of policy, regulation, public-private partnerships, financing and reimbursement.

Focus group. The research team will facilitate an online focus group using MS Teams with up to 12 social prescribers to explore their experiences of offering digital support. The focus group will capture a range of experiences and perspectives of offering digital support since the rapid shift to digitalised health and social care services. The group setting will offer the opportunities for social prescribers to compare experiences and perspectives on the extent to which digital support is integral to the social prescribing role and what infrastructure support might be needed to embed this work into existing roles and responsibilities. Focus group participants will be recruited through social prescribing networks that have been established in two geographically and socio-economically disparate sites (Plymouth and Oxford). Participants will be included if they have offered digital support, and will be purposively sampled to target participants who have supported people with social care needs, including those who are homeless/insecurely housed, living in care home or receiving domiciliary care.

Co-design workshop. The research team will set-up, design and facilitate an online co-design workshop with up to 12 people to address the design question: “what guidance, best practice or training is needed for support staff to offer digital help to patients seeking to access remote primary care?’ Workshop attendees will be recruited from the Expert Advisory Group for the Remote by Default study, the study’s virtual patient group, social care stakeholders, care navigators and social prescribers that have taken part in the study and, where appropriate, snowballing (i.e. ask participants to nominate others). The co-design approach involves engaging with those people who work with the processes of digital care navigation to elaborate on ways in which technology and working practices can be adapted, interpreted and better aligned (Papoutsi et al., 2021) – in this case to improve access to remote primary care. The workshop will involve participants exploring the findings of the study (for example by being guided by the research team through graphic and narrative depictions of the processes of digital care navigation observed during the study) with the aim of identifying opportunities for improving those processes. Pending the outcome of the workshop, outputs are likely to be targeted at people working in, or commissioning, social care settings and to include guidance at local commissioner level (implementation support needed) and practitioner level (identifying the essential components of care navigation for different patient pathways).

Public and patient involvement

Public and patient involvement (PPI) will be facilitated through the External Advisory Group (see Governance section) for the Remote by Default study that includes a lay chair, and through a virtual group that links into the 11 local patient involvement groups in participating practices. The virtual patient group are developing an interrelated piece of work known as ‘digital buddying’ and are developing an infographic on personalised digital support. Digital buddying has involved members of the PPI group supporting digital access with people who have less capability, skills or capacity to engage with technology. The supporting PPI member then shares both their experiences of offering support and the broader perspectives of the person they are buddying. This form of knowledge sharing is especially important in trying to sustainably reach and interact with seldom-heard communities. Our novel approach to PPI means that the group is well placed to critically review the findings of the Care Navigation study and contribute to co-designed outputs.

Data management and analysis

All formal interviews (go-along, elite) and the focus group will be audio recorded with consent, transcribed and anonymised. Researchers will also make contemporaneous fieldnotes during or immediately after go-along interviews to capture additional observations. Transcripts, audio recordings and fieldnotes will be stored on an encrypted server at the University of Oxford that meets the highest standards of data security and information governance. Facilitator notes, chat comments and summaries of discussions at the co-design workshop will be captured and stored in the same way.

Using thematic analysis, qualitative data will be processed onto NVivo, which allows for easy storage, indexing, categorising and coding of qualitative data across the research team. A broad coding framework will be used as an initial step for familiarisation and data categorisation that will allow for easy identification of data extracts around the themes of the study (see Box 2). The research team will produce narrative summaries of interviews and observations to combine the various data sources to build a rich narrative of the practices of care navigation. Narrative networks (a way of representing and visualising technology in use) will be created as a process of analysing the actions, connections and sequences that constitute practices of care navigation (Pentland & Feldman, 2007).

Governance

The study will be overseen by the Remote by Default external advisory group that has an independent (lay) chair and diverse representation from policy, clinical care, the commercial sector, people with lived experience, and members of patient advocacy groups and regulatory bodies.

Ethical approval

Approval has been granted from East Midlands—Leicester South Research Ethics Committee and UK Health Research Authority (September 2021, 21/EM/0170) and subsequent amendments. All research participants will give written informed consent in accordance with our ethics protocol.

Dissemination

The intention is to produce: (i) an empirically-grounded theorisation of how care navigation work is accomplished for remote primary care (ii) a policy briefing aimed at people commissioning and planning care navigation roles and functions (for example Primary Care Networks and Integrated Care Systems) and (iii) through a process of co-production, guidance on supporting digitally excluded groups for people involved in providing care navigation (such as social prescribers, housing support workers and social care providers). Dissemination will be supported by the RbD2 programme to practices and linked organisations, and through ongoing work with national and regional stakeholders and the Expert Advisory Group to further inform and support digital care navigation practices.