The AHSN Network launched a national lipid management and familial hypercholesterolemia (FH) programme in 2020 to improve detection and optimise treatment for patients.
High lipid (blood fat) levels, like cholesterol, contribute significantly to cardiovascular disease (CVD). The NHS Long Term Plan highlights that CVD is the condition where most lives can be saved over the next 10 years.
CVD is also one of the conditions most strongly associated with health inequalities. For example, people living in England’s most deprived areas are almost four times more likely to die prematurely of CVD, like strokes and heart attacks, than those in the least deprived areas.
When launching this programme, the AHSNs needed to ensure there was a robust equality assessment process to tackle existing health inequalities, share learnings nationally across the Network and engage and involve seldom heard or marginalised communities.
Our approach combined understanding health inequalities with patient and community engagement approaches:
- Understanding the problem: We reviewed what is already known about health inequalities in dyslipidaemia and FH by carrying out a literature search. This covered incidence, prevalence, access, and outcomes (clinical, safety and experience) for people with protected characteristics and other groups known to experience health inequalities. The findings were summarised in a report.
- Deciding what action to take: We used the findings to populate an equality and health inequality impact assessment (EHIA), which was signed off by NHS England’s Equalities Unit. The evidence summary and EHIA were presented at Network meetings, and shared with all AHSNs so that they could apply the findings to their local populations.
- Involvement in action: We ran two workshops with clinicians and patients. These focused on what mattered to the participants with regard to managing high lipids and helped to inform the creation of a patient-facing animation.
- Community engagement: Using findings from the evidence review, EHIA and workshops, we are running community engagement events with communities that are seldom heard or marginalised and at high risk of lipid disease. These include South Asian, Polish and Albanian communities, and those living in areas of multiple deprivation.
- Governance: Through open advert and interview, we appointed patient members to each of the three national working groups for lipids and CVD. These were joined by a charity representative, to give breadth to the patient view, and a patient and public involvement methodologist. A sub-group of staff and patient members was formed to support health inequalities work going forwards. We have surveyed all AHSNs to see what health inequalities work has been carried out, what community involvement has taken place and what help colleagues might need.
Health inequalities will be an ongoing focus of work within the lipid and CVD programmes.
This approach is being used to inform the approach to health inequalities for other AHSN Network national programmes. It will also support the new outcomes framework, which focuses on the people-related outcomes of AHSN programmes.
- Using an evidence-based approach to health inequalities can help target action with specific at-risk communities.
- Patients’ individual experiences and stories may not represent all people in their community but provide valuable individual perspectives.
- Involving patients with lived experience is not enough on its own – we need to triangulate knowledge. By starting with what we know from research about patient experience and outcomes and combining this with an exploration of how people think and feel for example through workshops, we can enable more targeted and effective patient and community involvement.
- To include the views of those from seldom heard or marginalised communities requires bespoke approaches, time and resources. However, it can provide rich and deep insights.
- Involving charities as partners can broaden understanding and increase access to additional information, perspectives and communities.
Access more learning case studies – Diversity and Innovation Progress and Learning Report 2022.