COPD Right Care

In 2021, the IPCRG initiated the COPD Right Care programme that will follow the principles of the successful Asthma Right Care movement. We are building a global social movement to improve care for people living with Chronic Obstructive Pulmonary Disease (COPD). We want to show who people with COPD are, what optimal and safe treatment looks like and why personalisation through shared decision-making is something we should champion.

Clinically effective and cost-effective COPD care consists of a correct, well communicated diagnosis that takes account of multimorbidity and therapy that includes multiple interventions to address personal need. However, we know that this is not always delivered and where measured in both primary and secondary care, there is stubbornly persistent and unwarranted variation in care.

Personalised and safe care, delivering a better experience for people living with COPD

Tackling overuse, misuse and underuse in COPD

COPD treatment at system and individual level is often characterised by overuse (e.g. oral steroids and antibiotics), misuse (e.g. oxygen) and underuse (e.g. smoking cessation and pulmonary rehabilitation) and these elements together provide poor value healthcare. This runs counter to the IPCRG vision that, through universal access to right care, everyone can breathe and feel well.

Here, we use the concept of Right Care as explained by the Lancet series 2017: “the shared challenge is ensuring the right care is received by the right patients, in the right setting, at the right time, at the right cost.” We would add “in the right way”.  The important point is to note that this means addressing both underuse of high value interventions and overuse of low value or harmful interventions.

This is crucial in health systems that are aiming for Universal Health Coverage because the opportunity to achieve health gains will be restricted if funds are devoted to poor care.  This need to consider several components is well described by the European Commission’s definition of value in healthcare. This incorporates four linked components:  personal, technical, allocative and societal value. For a person with COPD or a society wanting to attend to COPD, these value options could be considered as follows:

Allocative Value - ensuring that all available resources are considered and distributed in an equitable fashion. (e.g. access to respiratory infection vaccines benefits people with other long-term conditions as well as COPD and helps avoid inequity by disease i.e. cancer vs COPD.)

Technical Value - ensuring that the allocated resources are used optimally (no waste) to achieve best outcomes. (e.g. Oxygen for hypoxia only, not breathlessness.)

Personal Value - ensuing that each individual patient's values and goals are used as a basis for decision-making in a way that will optimise the benefits for them. (e.g. Where do I prefer to be at end of life, does the benefit of oxygen to me outweigh any risks?)

Societal Value - ensuring that the intervention in healthcare contributes to connectedness, social cohesion, solidarity, mutual respect, openness to diversity. (e.g. Support for the most vulnerable, safe spaces to walk and exercise, smoke and pollution free living and work spaces.)

Using social movements and followership for change at scale

As with the Asthma Right Care programme, our starting point is that education alone doesn’t solve variation and what is required is exploration of other factors in health systems such as different goals that drive different behaviours. The aspect that IPCRG believes it can impact most is the behaviour of those responsible for delivering the care. Behavioural change can be driven or hindered by capacity, motivation and opportunity. We selected a social movement approach to address motivation, by developing attention-grabbing content to disrupt and engage the participant. Once “kickstarted” by IPCRG it can nurture the voices of the diverse stakeholders in the system: policy makers, health professionals, patients and carers.

This movement will ask everyone with an interest or role in COPD care to accept responsibility and commit to making a personal change in practice and also to influencing peers to commit to that change too. The attack on variation can only be addressed if we strengthen our weakest links. To do this we will in addition to Right Care and social movements for health, we will include two other evidence-based approaches to effect change: achieving large scale change and  followership. This combined approach will achieve what standard publication, education and advocacy programmes have not.

Between 2010 and 2016, the National Health Service network programme in London, UK asked a group of multidisciplinary clinicians, managers, thought leaders, patients and public health experts to describe for the 32 separate health systems within the capital city what good COPD care should look like. The final report in 2016 provides a wider description of their work but in particular, the  COPD Value Pyramid is notable in that it has been highly effective in influencing thinking beyond its original intended audience by translating Right Care principles to a COPD model. This tool that describes the relative cost-effectiveness of the various COPD interventions known to be clinically effective, enabled a broader view of ‘what works’ and ‘what we can afford’ for the COPD interested audience. It has been quoted, re-imagined and adapted by many because of its face validity to those who know about or are interested in COPD.

In 2021 we will develop two prototype tool concepts that will help start new conversations about personalising care for people with COPD. We will work with two clinicians from each pilot country – Brazil (GEPRAPS), Portugal (GRESP), Spain (GRAP), USA (COPD Foundation), a patient expert from the US COPD Foundation and a community pharmacist from the UK.

Our four pilot countries will then test these products with colleagues and patients.

The team will develop a narrative with case stories, data, policy and system influencing ideas as slide sets, films and written material to support dissemination of the tools.

IPCRG has received funding from Boehringer Ingelheim for developing and testing two novel tools for the COPD Right Care programme.