Integrated diabetes care: The Association of British Clinical Diabetologists (ABCD) national survey report

Dinesh Nagi, Susannah Rowles, Andrew Macklin, Umesh Dashora, Heather Oliver, Dipesh Patel, on behalf of the ABCD Executive

ABCD executive

Address for correspondence: Dr Dinesh Nagi
Edna Coates Diabetes and Endocrine Unit, Pinderfields Hospital, Aberford Road, Wakefield WF1 4DG, UK
Tel: +44 (01924) 213594 E-mail: d.nagi@nhs.net

https://doi.org/10.15277/bjd.2021.325

Executive Summary

A national survey on integrated diabetes services was carried out by the Association of British Clinical Diabetologists (ABCD) during the COVID-19 pandemic and has provided some very useful insights into the current state of integration to deliver a joined-up diabetes service in the UK.

This survey was carried out during the second half of 2020 and explored three main areas: (1) current state of clinical integration between primary and secondary (specialist) diabetes services; (2) the state of IT integration among the diabetes IT systems and hospital-based electronic patient records (EPR) and between hospital and primary care; (3) to ascertain the membership of their views on a ‘one-stop service’ for collecting annual review data for diabetes and the potential barriers to achieve this. The results presented are a summary of the survey, while the full unedited survey report, especially on the qualitative aspects, is available to ABCD members.

The survey was mailed to 518 individuals, of which 431 (83.2%) were consultants and 53 (10.2%) were specialist registrars. Of the 83 replies received, 98% were from consultants and the responses represented a total of 73 hospital diabetes services.

The findings of this survey revealed that full integration of clinical services among primary care and specialist diabetes teams is uncommon, although there are good examples of clinical integration in different formats. In a number of areas, primary care and specialist diabetes services continue to work in silos despite a universal recognition that integrated services are desirable and are likely to improve quality of care. Clinical leadership, resources and buy-in from those who commission services were deemed important factors to help improve the development of integrated care systems.

In hospitals with dedicated diabetes IT systems the information flow from these diabetes systems to the EPR was not universal, raising concerns that vital information about an individual’s diabetes may not be available to other hospital clinical specialities at the time of delivery of care, posing a significant clinical risk. IT integration among primary and specialist diabetes teams in England was only available in certain areas and was mostly based around the use of SystmOne.

The survey also identified a diversity of opinions regarding the current arrangements of the Quality Outcome Framework (QOF), where GPs are incentivised to collect data for annual review of routine diabetes care. Many were of the opinion that annual review processes should be performed by clinical teams who are tasked to deliver diabetes care to the individual, while others felt that the status quo should continue with primary care GPs being responsible. A one-stop service for eye screening for diabetes and other annual measurements nearer to people’s homes was identified as an improvement, but several logistic barriers were identified.

We recognise the limitations of any survey which expresses opinions of participants. However, we believe the present survey represents a significant proportion of diabetes units in the UK and provides insights into the current state of integrated services in diabetes. There are significant learnings for diabetes communities, and the information can be used to improve and galvanise delivery of integrated diabetes care in the UK.

Br J Diabetes 2021;21:272 - 280

Key words: diabetes, integrated services, survey, annual review process, primary care, specialist diabetes services

Introduction

Context of COVID
The Association of British Clinical Diabetologists (ABCD) has been active in producing several guidelines and reports during the COVID-19 pandemic. These reports were mostly designed to provide guidance for specialist diabetes teams to enable the delivery of diabetes care at the peak of the viral pandemic, where the emphasis was to support acute services for people admitted to hospital,^1,2 to support people with diabetes at high risk of poor outcomes³ and to alter systems to focus care on those deemed at high risk.

One positive result of the pandemic was that it has afforded clinicians in the UK and worldwide the opportunity to innovate to help support patients in new ways. It is clear to healthcare professionals and the wider NHS that provision of clinical services will never be the same again, and opens the possibility of shaping a ‘new normal’ for clinical service provision. ABCD has also published its own guidelines on individual risk stratification and recovery of diabetes services.²

With the delivery of a widespread vaccination programme and proposed ‘roadmap out of lockdown’, ABCD was keen to produce a ‘real-time’ piece of work to help promote positive evolution of diabetes services post COVID, to ensure the learning and innovation during the pandemic becomes embedded and is not lost.^4,5 ABCD would regard a return to ‘business as usual’ arrangements to deliver diabetes services as a wasted opportunity for long-term change to reconfigure services.

This survey was conceived, designed and piloted by the ABCD Executive team and then sent to the organisation’s membership. The membership comprises four nations (England, Scotland, Northern Ireland and Wales) and represents a diversity of practice including small district hospital teams, community services and larger academic institutions.

The aim was to benchmark diabetes services as they are now, drawing on the expertise and experience of those who have shaped them to date, and asking them what a better future would look like and how it could be achieved.

The survey had three sections focusing on evidence-based key elements of successful delivery of diabetes services:

1. integration of clinical services among specialist and primary care teams (Section A)
2. the current state of IT support available to the specialist diabetes teams to support clinical integration (Section B)
3. how the current provision of an annual review process for the collection of vital data may be improved (Section C)

Definition of integration
The concept of an ‘integrated diabetes service’ is not new and means different things to different healthcare professionals, managers and health policy makers. Integrated diabetes care involves both integration of a healthcare system and coordination of services around a patient. “An approach that seeks to improve the quality of care for individual patients, service users and carers by ensuring that services are well co-ordinated around their needs”.^6-8 In essence, diabetes integration is the whole health community joining in partnership to ‘own’ healthcare delivery and outcomes of patients with diabetes in each locality.^8,9

However, for the context of this survey, we defined integrated diabetes care as “clinical care in a given health economy where the delivery of diabetes care is seamless among specialist and primary care and is well supported with IT systems, where planning, delivery and learning from these services is joined up with sharing of information, and where services are efficient and provide value for money”. Delivering integrated care is challenging for numerous reasons, including the complexity of diabetes care and organisations working in silos focusing on their own priorities which are not necessarily aligned with each other.^10,11 Moreover, measuring the success of an integrated care system is extremely challenging; however, several key indicators to measure the success of clinical integration have been proposed.¹¹

The aims of this survey were to gather information and intelligence at a national level for each of the above three elements and to produce a summary to inform future recommendations and catalyse discussions around the topic. A definition and explanation of integrated care was provided to help complete the survey questions related to this (Section A).

Survey methods

The first draft of the survey questions was written by one of the authors (DN) with contributions and further refinements by the ABCD executive team, and was shared with Diabetes UK and NHS England before it was disseminated via email to diabetologists who are members of ABCD. Due to the nature of this survey, we had invited open comments from participants to gather as much qualitative information as possible which is included in this report. The responses to the survey were handled by the ABCD secretariat and preliminary data analyses were produced.

Results

The survey was sent to 518 individuals comprising 431 (83.2%) consultant grade, 53 (10.2%) specialist registrars, 30 others and two retired healthcare professionals, one paediatric diabetologist and one dietician. Of the 83 replies received, 98% were from consultants. Although the original survey response was 17%, we believe that it represents 73 hospital-based diabetes services. The number of those who responded by region is shown in Table 1.

Quantitative results
The results are given as absolute numbers and percentages which are rounded up to the nearest number. Where there was more than one potential answer, percentages exceed 100% (see survey results Sections A, B and C).

Qualitative results
The survey generated significant information on the views, ideas and experiences of diabetes specialists, which are summarised below.

Integrated care: 69 separate comments and 30 separate comments about the planning for integration between primary and specialist diabetes services, which are summarised in Box 1.

General comments: (37 comments). Participants were invited to give their general comments which were deemed to be important to them in relation to the survey. We were encouraged by the comments that “The survey has worked well” and provide a summary of these comments in Boxes 1 and 2.

Annual review process and potential barriers to one-stop service: (29 separate comments). These are summarised in Box 3.

The survey comments provided a useful insight into the various levels of integration among primary and specialist diabetes services. A thematic summary of these comments is provided in Boxes 1–3.

Discussion

Opportunities to reshape clinical services are not common events and usually arise out of the necessity to do things differently, with the aim to improve quality and efficiency of care. While quality improvement initiatives are mostly driven by scientific, societal, economic and technological developments, opportunities sometimes arise at times during adversity, such as the COVID-19 pandemic.

To the best of our knowledge, this is the first survey of its kind in the UK, giving us a unique snapshot of the current state of integration of clinical services for diabetes. The survey represents a sizeable response from the specialist community and we feel that, in general, the data are representative of the UK. We acknowledge that there are several examples of attempts at collaborative working in various areas,^13–18 although the general uptake in the UK has been relatively slow. This survey provides some insights into the current state and the barriers to such developments.

Opinion of respondents on the degree of clinical service integration in their area
The main results show that more than 50% of respondents reported a lack of integration within primary care. While 46% reported some form of integration of services, only 20% of those reported full integration which included most elements of the components outlined earlier.

The survey reported that 72% of respondents thought the pandemic had slowed down planning for integration and only 18% thought it had speeded things up. We are unclear of the reasons behind this and can only surmise that overriding priorities during COVID at the front line may have impeded these developments.

Specialist colleagues in diabetes almost universally acknowledge that clinical integration and joined-up working would improve clinical care and is considered optimal for the development of efficient services for people with diabetes in a given locality. However, many expressed dissatisfaction with the lack of wider system support such as lack of clinical leadership, lack of priority by senior management and inadequate funding.

While ABCD would like a deeper understanding of the reasons behind the abovementioned views, we believe that the key missing elements in each locality to improve services and deliver integrated diabetes care may be important.

The findings of this survey indicate that, whilst some CCGs/STPs have taken responsibility to coordinate diabetes services for a locality, this appears to be an exception rather than a universal phenomenon. There remains a feeling among clinicians that commissioners of diabetes services could contribute much more to support the development of integrated clinical services. Examples of good clinical practice delivering integrated care have been previously published.^13–19

However, the survey data also showed that there are several examples of high levels of integration in some units where local clinical leaders have driven the integration, realising the importance of this to the delivery of high quality and efficient services. The results of this survey show that a very high proportion of specialists are cognisant of the importance of integration but feel constrained in their ability to catalyse successful change. Several barriers were identified which are outlined in the data provided.

This is potentially the first national survey of diabetes integration and there may be a case to repeat this in the future, with more clear benchmarking of the key areas to observe how integration evolves in the future and how it influences outcomes and components of diabetes care such as skill development in primary care. We have previously shown that joined-up working and supporting primary care can lead to upskilling of practices and clinical staff in the provision of levels of care.¹⁹

Our interpretation is that, while there has been progress since the report on integrated care by the Societies in 2013, a high proportion of primary and specialist diabetes services still continue to work in their silos with little evidence of integrated and joined-up working.

Opinion of respondents on integration of information technology (IT) systems
The second part of our survey focused on the level of IT integration among hospital systems and also between primary and specialist diabetes teams. The importance of integrated IT systems is recognised as it may allow seamless sharing of clinical information across systems and facilitate improved timely communication between caregivers. Importantly, it has the potential to increase the individual’s involvement in their own healthcare. Such systems may avoid duplication and hence expenditure.

While 72% reported that their hospital had an EPR, a specialist diabetes database was only present in 46%. However, there was evidence of integration among hospital-based IT systems. IT integration between specialist and primary care systems was only reported in a minority of services (29% ‘read & write’ facility, 29% ‘read only’ facility). A substantial proportion reported lack of IT integration among GP/hospital/podiatrists/retinal screening services and reported no shared electronic data between various service providers. IT solutions need to be found to help share data across clinical service units in a consistent manner to improve the present situation observed in this survey.

While nearly half of the specialist teams who replied reported the use of an IT system to deliver specialist diabetes services, low levels of interaction between diabetes systems and the hospital EPR suggest that vital clinical information pertaining to diabetes is not widely visible to other clinicians, posing a substantial clinical risk.

Although ABCD accepts that IT integration is vital to achieve clinical integration as it helps facilitate sharing of clinical information, in isolation it is not enough to achieve the necessary changes. IT systems should be viewed as a vital enabler. Integration is more than the development, acquisition and installation of robust IT systems (in itself a challenge); it requires a joined-up approach with various stakeholders, including those who can enable these changes. This has been highlighted in a recently published government White Paper. The recent formation of primary care networks may facilitate leadership required from primary care. Indeed, the diabetes primary care community has recently launched a document highlighting a renewed vision of joined-up care for people with diabetes.²⁰

We observed that, in localities where IT integration has happened, it was based around the use of SystmOne which allows sharing of clinical data. This allows a number of functions which have become so useful in the delivery of diabetes care including rapid communication, instant clinical messaging across teams and e-consultation between primary and specialist teams.

Perhaps the UK diabetes community should help endorse a finite number of excellent IT platforms whereby individual choice can be based on local needs and interconnectivity with existing systems. This may help reduce inertia precluding commitment to IT systems.

Opinion of respondents on annual diabetes clinical reviews
The final part of our survey focused on the annual review process for diabetes, a process that has been shown to improve outcomes and which has been key to the collection of vital datasets which form a key area for the care planning process. During the COVID-19 pandemic there have been huge challenges to the collection of routine data due to the need for shielding of those at highest risk. We were not surprised that up to 60% of colleagues felt that the arrangements of the annual review process were unsatisfactory and that changes should be made to ensure the process was more efficient, better coordinated and provisions made for feedback to the patients.

Whilst many colleagues were in support of a one-stop service for the annual review process at the retinal screening, it was acknowledged that this raised logistical challenges and also barriers with regard to workforce and flows of finance. The current lack of joined-up IT also proves to be a hurdle.

There was some support for the view that annual reviews should be organised by teams who are primarily responsible for delivery of diabetes clinical care. In other words, patients who attend specialist diabetes teams routinely should receive annual review processes from these teams. However, significant numbers reported that current systems for annual review as part of the QOF set-up should continue.²⁰

To deliver a one-stop service, the type of location was not deemed important as long as it was near to a patient’s home and accessible with some flexibility. Coordination and sharing of the data collected during annual review was deemed to be important. Therefore, the location of one-stop services could be determined by service users and community healthcare teams.

Integrating care has meant that more people are seeing the benefits of joined-up care between GPs, care at home and in care homes, community health services, acute trusts and mental health services. For staff, it has enabled people to work outside individual organisational silos, deliver more user-centred and personalised approaches to care, and identify and help tackle barriers preventing optimal care for people with diabetes. It enables greater ambition on tackling health inequalities and the wider determinants of health.

The results of this survey point out clearly that we are some way off the universal existence of an acceptable standard of integrated diabetes services in the UK. Solutions need to be developed and put in place to address this urgently; fortunately, none of the barriers are insurmountable.

ABCD believes that the experience of the pandemic has made the case for integrated care even more strongly and believes the insights from this survey should serve as a stimulus for wider discussions among stakeholders. The results of this survey should form the basis for making firm recommendations to commissioners for improving the state of clinical and IT integration in the UK, similar to that in Scotland.

We believe urgent prioritisation and resources are needed from NHS England to develop truly integrated diabetes services. We hope the planned legislation based on the government White Paper will facilitate delivery of this and call upon our membership to help drive this process.

Government plans for integrated services have been outlined recently in a White Paper for integrated services, highlighting the two principal forms of integration which will need to be underpinned by the legislation:²¹

(a)   Integration within the NHS to remove some of the cumbersome and unnecessary boundaries which inhibit collaboration and to make working together a high-level organising principle.

(b)   Greater collaboration between the NHS and local government, as well as wider delivery partners, to deliver improved outcomes to health and wellbeing for local people.

In theory, this should enable different parts of the health and care system to work together effectively in a way that will improve outcomes and address inequalities. Clearly, the details of this crucial legislation have the mechanism to facilitate true integration.

The NHS has experienced several cycles of high-level organisational changes and some of these have led to greater bureaucracy and added barriers to joined-up and collaborative working, which remains the essence of integrated care. Keeping this in mind, the White Paper plans to give additional power to the Secretary of State for Health and Social Care to intervene in how NHS England operates.

The White Paper proposes substantial legislative changes which aim to:

• Make permanent the innovations that COVID-19 has accelerated and encourage the system to improvise new and better ways of working.
• Integrate healthcare in England by enshrining integrated care systems in law.
• Reduce bureaucracy and create flexibility.
• Improve NHS England accountability and enhance public confidence.

We welcome the recent signals from government with regard to their determination to ensure that public health, social care and healthcare work more closely together in the future than ever before. We recommend simplicity, clarity and commitment for legislative changes to help delivery of these objectives to be achieved – namely, to deliver true integrated care. We hope the planned legislation based on the government White Paper will ultimately facilitate delivery of this promise and we call upon our membership to step into the driving seat.

Recommendations

Based on the results of this important survey, ABCD recommends that, in addition to the enablers for integrated care outlined, clinical services in a given locality should aspire to at minimum:

1. A joined-up approach to planning and delivery of diabetes services among commissioners, specialist diabetes teams and primary care.
2. The aim should be to improve quality of diabetes services to a higher level and to improve clinical outcome of individuals with diabetes.
3. A designated lead who will be responsible for overseeing that integrated services are developed and allowed to expand in a given locality (ie, there is governance and accountability for this).
4. Each diabetes specialist team should be supported by a dedicated IT system/s and diabetes database in their units.
5. Specialist diabetes IT systems must interact and be integrated with local EPR and primary care systems, allowing easy sharing of data for ease of delivery of clinical care.
6. There should be a high-level NHS mandate for the above recommendation during future re-organisation of chronic disease management in the UK, as suggested in the recent White Paper.

Limitations of the survey

1. No service user involvement during survey design. Hopefully, discussion fuelled by this paper will allow a more structured dialogue with service users in future surveys. Any future recommendations for redesign of services must involve patients and careers.
2. The survey did not ask if the IT system allowed direct patient access to their data (in either ‘read-only’ or ‘read and write’ format) or issues related to data protection.
3. The survey was limited to the ABCD membership, which may skew the responses.
4. The information provided is based on the view of individual clinicians rather than data collected using a more structured and robust method, and is open to over- or under-reporting of the true picture.
5. The overall survey response was low, which may limit the conclusions of the survey.
6. There were some leading questions which might have biased the reply from the respondent.
7. As the participation was voluntary, we cannot exclude a self-selection bias.
8. Under-representation of some areas (eg, East Midlands, North East, Northern Ireland).

Strengths of the survey

1. The survey questions were designed after significant discussion within the executive committee, a group of experienced diabetologists. We asked contemporary and targeted questions; answers to these are likely to help future diabetes care.
2. This is the first comprehensive attempt to acquire a view from all diabetes hospital services in the country. A representation of 73 different diabetes units with different levels of integration provides a picture which is likely to be reliable.
3. The qualitative aspect of this survey enriches the practical value and applicability of the survey.
4. Those constructing future surveys in this area can learn from omissions and the limitations and strengths of the present survey.
5. The survey was collected during the pandemic and revealed serious gaps in our existing services, especially integration with primary care and IT solutions. The survey captured the current and new beliefs informed by the challenges of diabetes care during the pandemic.
6. The survey represents views of specialists across four nations, which will allow us to learn from the strengths/weaknesses of these services.

Acknowledgements We are very grateful to Dr Rustam Rea (Oxford Diabetes Unit) for valuable and astute comments regarding this survey and important suggestions during preparation of this manuscript.

Conflict of interest None.

Funding None.

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