Patients are key to rethinking diabetes care (Guest blog)
Diabetes care is complex. Every person living with diabetes has unique needs, requiring input from primary care providers and a range of specialists. In addition, people with diabetes often have other non-communicable diseases (NCDs) which must also be managed to reduce the risk of preventable complications.
In many cases, diabetes care has evolved to become deeply fragmented which makes delivery inefficient and, crucially, falls short of the best possible outcomes that matter for patients and people. Siloed budgeting and IT systems underpins siloed care delivery.
These shortcomings are not the patients' fault. In fact, patients are at the heart of the solution. People with diabetes are best-placed to tell us how care can meet their needs and what outcomes should be measured to determine whether services are working well.
Keeping those receiving care in mind at all times is also central to the integration of budget and IT systems. If funding and data follow the patient, a new era of diabetes care can be unlocked.
Consider the practical impacts of this problem from a patient’s perspective. An individual’s first point of contact for diagnosis and ongoing management is often in primary care. But they may also need to see hospital-based specialists in endocrinology, cardiologists, nephrologists, ophthalmology and others.
The way in which care is usually funded, dates back to an era where complex patients with multimorbidity were rare. Today, and in the future, they are a large and growing proportion of society.
Traditionally, health services have been based on a fee-for-service model, where payments are linked to activities or services. By paying providers based on the number of visits, this approach can inadvertently incentivise one part of the system to hold on to patients when they may be better treated elsewhere. In contrast, block payments, performance- or incentive-based payments, bundled payments and capitation payments can foster cooperation around a more person-centred approach to care.
Fragmented data systems also pose problems. If healthcare providers’ IT systems are not well connected to hospital-based physicians (vertical integration), or if specialists in different fields are not talking to one another (horizontal integration), people and patients can experience frustration and fragmented care. Perhaps their GP does not have the results of tests performed in the hospital, or the cardiology consultant has outdated data from the endocrinologist.
This can lead to tests being repeated and time being wasted; it can mean clinicians make decisions without access to important information. As well as wasting time and resources, serious problems can be missed or medication may not be optimised in a timely manner.
Missed opportunities for better care can have a detrimental impact on outcomes. That is why stronger links between healthcare CRM (customer relationship management) systems are vital.
Learning from one another
To help address these issues, a report by the Economist Intelligence Unit, commissioned by the EFPIA Diabetes Platform, points the way to a more holistic, person-centred future for diabetes care. The study includes a scorecard assessing integration in 28 European countries and several case studies highlighting good practice.
For example, a pilot project in the UK entitled the Year of Care Programme looked at how care planning can be a catalyst for progress on integrated care. The initiative delivered improved blood pressure and glucose control, as well as higher levels of clinician satisfaction and greater patient involvement in their own care.
The experience of the Czech Republic with performance-based bonuses to incentivise integrated services, the use of bundled payments in the Netherlands, and Portugal’s Health Data Platform are explored to highlight innovation as well as the variety of approaches taken across Europe.
What can Europe do?
Diabetes care is fragmented within and between countries. People with diabetes who move across European borders face additional difficulties in accessing their health data and in accessing integrated care. While health is a Member State competence, the EU can play an important role in addressing fragmentation.
For example, the EU4Health programme offers unprecedented opportunities to support cross-border health initiatives while the EU Health Data Space has potential to transform how and where patients and clinicians access health data.
The European Semester process can also be harnessed to highlight progress and shortcomings on how NCDs are managed by multidisciplinary teams. And, given the importance of integrating diabetes care with the management of other NCDs, the Healthier Together initiative is another step in the right direction, albeit with some room for improvement in terms of achieving holistic disease management.
People at the centre
As ever, we know that what gets measured, gets done. That is why it is essential to establish evaluation mechanisms to facilitate continuous monitoring and improvement of integrated diabetes systems. When deciding what outcomes to measure, we must again consult the patient. They are best placed to tell us what matters most to them.
The notion of person-centred care is not new. We have been discussing it for many years. And, while some progress has been seen, now is the time to step up patient partnerships in how systems are designed, how care is delivered and how we track progress.
It is important to have all voices in this conversation. However, the patient should have the last word: it is they who experience all aspects of our diabetes systems. No other stakeholder can bring the holistic perspective required to move us forward.
Partnering with patients is no longer a ‘nice to have’. It is essential to the design and delivery of an efficient and sustainable health system focused on prevention and patient outcomes.