Summary
Diabetes costs the NHS 10% of it budget, with 80% of that directed at treating complications. This is unsustainable and the role the patients have in self care has never been more important. New models and pathways need to include their role as advocates in managing their own health. The Diabetic Foot Network developed a new pathway that not only includes clinical hazards, but also patient activation, to determine true risk to crisis. This new model is innovative and transferable to all aspects of diabetes, freeing up capacity to those who need it most, improving outcomes and using fewer resources.
Innovation
Analysis of amputations in Swansea Bay (2015) showed that 40% were a result of human factors. Models and pathways to manage diabetes foot disease were created, but all focused on clinical indicators, without considering the role of patients. The Putting Feet First (PFF) initiative was seen as paternalistic and resource intensive, offering little opportunity for patients to reduce their risk scores. Therefore the Diabetes Foot Network secured money for ‘care aims’ training. This was delivered to the network, facilitated by Kate Malcolmess, a consultant specialising in ethical practice. The training was important as it was not just the pathway that was being changed, but also the culture around delivering person-centered supported care. The Prudent Healthcare model for prevention of diabetes-related foot disease rated the importance of assessing patients’ activation levels to support their care on a par with the clinical hazards, giving a true risk to crisis measurement and establishing subsequent need. The All Wales Diabetes Patient Reference Group, Welsh national standing advisory groups for diabetes, the NICE facilitator for Wales and the Welsh Endocrine and Diabetes Society were involved early on. Insignia’s Patient Activation Measure (PAM) licence (a validated, web-based tool) was purchased to measure patient activation.
Equality, Diversity and Variation
The PFF pathway directed need based on perceived risk categories and recommended interventions for all within that risk category. This approach assumed risk could only stay the same or get worse, giving no incentive for the patient to try self care. The new pathway personalised need based on the clinical test and patients’ willingness to actively support their own outcomes. This allowed the team to determine true need for individuals, allowing them to reduce risks through improved activation. Those with the greatest need received coaching for activation through increased service capacity. The Insignia platform showed subsets of the service, identifying areas of need for activation support. This activation approach to support equity of care is transferable across health boards. The licence has been extended to patients attending podiatry without diabetes. Implementing patient activation within the Prudent pathway not only uses resources more effectively and efficiently, but also ensures equity and diversity of care.
Results
The PAM13 questionnaire was core to identifing patients’ activation levels. The All Wales Diabetes Implementation Group funded the licence for a year, which was rolled over for another year, with four of the seven university health boards’ podiatry services looking to continue the funding. Data collection started at the end of 2021. Over 2,400 patients with diabetes across three health boards were assessed under PAM, showing distribution of activation score and levels across subgroups and individual health boards, highlighting capacity needs and efficiencies to provide a value-based service. The PFF pathway recommended patients should be seen 1-12 times a year on top of their annual foot assessment. The new pathway allows patients with level 3 and 4 activation to use patient-initiated follow up (PIFU), freeing up capacity and removing unnecessary appointments. The PAM is also a patient-reported outcome measure. Applying the PAM before and after an intervention should see increased activation levels if patients’ knowledge, skills and confidence have improved. The PAM trend over time showed a decrease in those with low activation levels 1 and 2 and an increase in levels 3 and 4. Significant improvements were seen in level 1 (70.6%) and level 2 (63.4%). The Clinician Support for PAM (CS-PAM) was used to identify changes in importance scores among clinicians after a period of using and coaching for activation. It found low importance scores reduced, while moderate and high increased. Clinician understanding of patient activation is core to co-production as equal partners in shared decision making.
User Feedback
The All Wales Diabetes Patients Reference Group was engaged with the project from the outset. Patients’ experiences were core to shared decision making. The new model and pathway received feedback before presenting to the health boards’ Diabetes Service and Improvement Groups, which had patient representation. Early dialogue with the NICE facilitator for Wales reassured that this was an exemplar of practice that could support NICE. Delivery commenced through Podiatry across Wales and is now supported by the new All Wales Podiatry Taxonomy. The development and implementation of the pathway relied on a change of culture for both clinicians and patients, so it was important to capture all their views and experiences. Compliments were received from both groups.
Dissemination and Sustainability
Patient activation is now part of the consultation process with patients attending podiatry services in Wales and is as important as clinical tests in determining outcomes and patients’ engagement to support self care. It is used in three of the seven health boards in Wales, with a fourth joining imminently. Prudent Healthcare is embedded into Welsh Healthcare and co-production is highlighted as a key principle. For co-production to be effective, patients need knowledge, skills and confidence. They feel listened to and supported to achieve their goals. Although this project set out to change the diabetes pathway, it also changed the All Wales Podiatry Taxonomy. The aim is to spread and scale this work across social care. The model has been disseminated through presentations and via life sciences hub webinars. Interest has been shown inside and outside Wales to improve supported self care through activation, with some looking to use it in cancer care settings.
