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Working with patients to design an equitable health and care system

15 June 2021 | Daphne Amevenu
Daphne Amevenu is Deputy Programme Director for cardiovascular disease (CVD) prevention and proactive care at UCLPartners. Here, Daphne reflects on the importance of involving patients and the public in healthcare design and explains the approach she has taken to ensure patients are influencing the way the UCLPartners’ proactive care programme develops.

With the onset of the COVID-19 pandemic, the UK has been forced to recognise the longstanding inequalities in our society, particularly those that impact people’s health. One of the many issues contributing to health inequalities is the limited extent of good public and patient involvement and engagement (PPIE). To create healthcare interventions that truly meet the needs of patients, it’s important to engage people at the point of design and give up power so patients feel able to challenge the ‘expertise’ of healthcare professionals. The lived experience of patients is a type of expertise that should be valued just as much as medical expertise. There are many issues limiting good PPIE, including a lack of diversity of people represented and timing of engaging patients and the public.

In 2020, as the UCLPartners team developed an innovative approach to tackle cardiovascular disease and respiratory illnesses, it was key for us to ensure our new programme of work would reduce rather than exacerbate health inequalities. Cardiovascular disease is one of the most common causes of death and is also the condition that contributes the most to the life expectancy gap between the most and least deprived communities in the UK. We developed a set of Proactive Care frameworks that enable those working in the new world of primary care post COVID-19 to proactively support their patients with long-term conditions. In doing so, we hope to reduce the likelihood of exacerbations of these conditions, such as a heart attack or stroke as a result of uncontrolled blood pressure.

We’ve had great interest and enthusiasm to implement the Proactive Care frameworks across England and we’ve now partnered with the NHS @home team to rollout the frameworks nationally in the Proactive Care @home programme. There are four Integrated Care Systems/Clinical Commissioning Groups involved in the pilot programme.

Throughout the development and evolution of the frameworks, it has been crucial to test our approach with the people who we wanted to benefit from it. In March 2020, we held a virtual patient and public workshop with roughly 30 patients and carers to gather insights to inform the development of our CVD programme. The session generated rich feedback that strongly influenced the way the protocols and scripts were developed for staff. The group helped us realise the need to develop training focusing on health coaching, which we developed with Care City, and influenced the development of multimorbidity resources – i.e. treating the whole person not a single condition. We continue to share the key themes from this workshop when presenting the frameworks to new audiences. It’s important to share with national and local NHS commissioners and clinicians what really matters to patients.

We have a variety of supporting resources for primary care staff to use, including protocols that support staff working in primary care can use to have good conversations about lifestyle management and behaviour change. The most recently published CVD multi-morbidity protocol was tested with a diverse group of 20 people who have long-term conditions. At the online session, there were community leaders, people from a range of minority ethnic backgrounds and people of a variety of ages, from their 30s to those who were retired. The session was my favourite meeting at UCLPartners as it really brought home the value of the work we do. I was blown away by the honesty and openness of the group – it was an incredibly motivating session and I hope to join many more like this.

For me, PPIE is a crucial element of the work I do here at UCLPartners, and I’m committed to continuing to involve people living with long-term conditions in our work. There are many exciting ways we are already working with patients or planning to work with patients. The Community of Practice for the four pilot sites has two people living with long-term conditions participating in the meetings. To support patients to feel confident using technology that enables remote monitoring and self-management, we’re developing patient-facing resources and will involve people living with long-term conditions in the development. To understand the impacts of the pilot programme, we’re conducting a short-term evaluation to understand how patients and the workforce are responding to this new approach. We will involve patient views in this evaluation.

Our ongoing commitment to PPIE aims to ensure our approach does not exacerbate existing health inequalities, but rather reduces them systematically. I hope our work contributes to redesigning a more equitable health and care system that gives people the level of support they need in the way that most suits them.