‘There’s still a long way to go before patients hold real power in healthcare’

Yesterday was World Asthma Day and as 2020health reflects on its aim to raise awareness of asthma and improve asthma care throughout the world, Asthma UK launches their ‘Compare Your Care’ campaign. For more information see www.asthma.org.uk/compareyourcare/ #compareyourcare/  @emilyjhumphreys

Emily Humphreys , Head of Policy and Public Affairs, Asthma UK writes us a guest blog post. 

If recent debates about NHS whistleblowing, data publication and transparency have highlighted anything, it’s that there’s still some way to go before patients have enough information to hold real power in healthcare.  

We’ve all heard the drive for data transparency and patient empowerment criticised on the grounds that patients aren’t “consumers” of healthcare and their lack of knowledge is so great that they will never be able to make informed decisions. Health is just too complicated, so the knowledge required to judge whether services are good enough can never be accessible to non-professionals.

All this is somehow seen to justify keeping information out of the public domain. People might misunderstand data and undermine a provider through ill-conceived panic, so we shouldn’t risk sharing it; besides, they don’t need to understand, because the NHS is already doing the best it can.

Post-Francis, this toxic combination of defeatism about patients’ capacity to understand information and complacency about the service that is already provided just isn’t acceptable. However good a hospital or practice is, it can always aspire to do better – and should it happen that a service is not quite as good as it thought, it needs to know that to be able to make improvements. More importantly, the people whose health would suffer as a direct result of inadequacies in that service have a right to know about them and to be able to act on that knowledge themselves.

As a patient charity, Asthma UK is always looking for the kind of information that would really help people with asthma to understand the quality of their local GP or hospital care. Many – perhaps even most – people with asthma won’t have heard what care they should be getting so won’t be in a position to make judgments. But the responsible reaction to that problem is to help them understand more, not to deny them their right to information.

People ask us what to look out for and what to avoid, or even for recommendations about where to register – but the information we’d need to be able to answer those questions isn’t all that easy to come by. Standards and guidelines are in place, but who’s to say where they are being met? There is no national clinical audit of asthma care that covers general practice as well as hospital care.

That’s why Asthma UK is launching the Compare Your Care campaign on World Asthma Day this year. We’re asking people with asthma to take an online quiz, which will tell them whether their care is in line with the asthma quality standard which was published by NICE in February.

This is a simple, visual and accessible tool to engage patients in their own care. Based on people’s answers, they will receive a ‘traffic light’ rating for their care – it will either be identified as red (their care is falling short by meeting less than half of standards); amber (some aspects of their care are not meeting standards); or green (their care is fully in line with standards).

The idea is to educate patients about what good asthma treatment is so that they can make their own judgments. In the process, we’ll also be building up a national picture of their experiences for publication in the autumn, and using it to highlight where patients say that asthma care is great and where it needs to improve.

Patient groups want to champion and spread existing good practice and to help support improvement in areas where care is falling short – but we can’t do either if we don’t know whether care is good or not.

The only people who can help us uncover the reality of patient experience are patients themselves. If they feel powerless in the face of a vast and unchanging healthcare system, how can we expect them to take responsibility? With ‘Compare Your Care’, we hope to lead by example, finding new ways to engage and empower patients to think about their healthcare and hold their local NHS to account.