Blog by Ed Harding, the Heart Failure Policy Network
At 65 pages (not including references), the latest European Society of Cardiology (ESC) clinical guidelines for heart failure (HF) are an unlikely read for most of us. Luckily for me, and the Heart Failure Policy Network (HFPN) team, finding the time to read them is part of our day job. Needless to say, even clinical guidelines are never short of controversy and, occasionally, even cynicism. But reading the guidelines always feels like a privilege, and is often inspiring in terms of exposure to the vast detail and the many lifetimes’ worth of expert commentary and knowledge contained therein. Guidelines are by nature about people’s futures, and it is hugely rewarding to offer accessible and accurate commentaries.
Understanding clinical guidelines, however, is going to be a more demanding exercise for those of us who do not work 9 to 5 in health policy research – whether this is due to lack of time or unfamiliarity with the content. This includes HF patient advocates, for whom running a patient advocacy campaign may need to be managed around their day job. Often this is in the face of competing pressures including, for many, the symptoms of HF itself. Finding time to stay abreast of guidelines, and what they mean for your practice, is hardly easy for general practitioners (GPs) either. Especially as they deal with ever-increasing pressures, and the specialisation and diversification of clinical guidelines.
Understanding heart failure guidelines
‘Often the gap between clinical best practice and everyday reality is significant. Yet clinical guidelines are written by clinicians, for clinicians. Patients and advocates need to be empowered to understand the guidelines to demand better care.’
Neil Johnson, Chief Executive, Croí, the West of Ireland Cardiac & Stroke Foundation & National Institute for Prevention and Cardiovascular Health (Ireland)
Guidelines remain a vital foundation for all patient advocacy activities, given that their mission is to scrutinise HF care in their country, locality or specific population. Simply put, it is vital to have something concrete to compare the status quo against if we want to highlight the gaps and shortcomings experienced by patients and supporters.
Yet for many advocates, and even non-specialist physicians, the detail and comprehensiveness can be a barrier to understanding guidelines. This, in turn, is a barrier to ‘literacy’ in current best practice, and therefore effective campaigning for change. Commentators have consistently stated the need for a more accessible route to understanding best practice. One notable barrier in HF care and outcomes is low awareness of guidelines outside of specialist settings, which is not helped by the general lack of materials adapted to non-specialists.
To bridge this gap, the HFPN has launched a new collection of accessible guides to help people familiarise themselves with key HF guidelines, including those by the ESC, its Heart Failure Association (HFA) and England’s National Institute for Health and Care Excellence (NICE).
What is in the Understanding heart failure guidelines collection?
‘These guides are an engine for us, to bring us further to the goal of patient empowerment – they are a universal tool which is understandable for every EU citizen.’
Patricia Vlasman, HF patient and advocate, Let the Beat Go On (the Netherlands)
The new collection includes seven guides, covering:
- The multidisciplinary team
- Clinical management
- Patient empowerment and self-care
- Advance care planning.
Each guide offers a brief introduction on the topic (using information from clinical guidelines and sometimes expert commentary), followed by summaries of best-practice recommendations from the guidelines. The guides were developed in collaboration with a multidisciplinary group of expert supporters, including patients, healthcare professionals, patient advocates and policymakers.
Who are we?
Since 2014, the HFPN has sought to drive meaningful change in HF policies across Europe. The Network engages directly with policymakers and, perhaps even more importantly, generates evidence-based materials to support and empower HF advocates in communicating a compelling case for change.
How does this collection build on our existing work?
We published our landmark advocacy resource The handbook of multidisciplinary and integrated heart failure care in 2018. The handbook is a pragmatic tool for national policy advocates to engage decision-makers in implementing high-quality HF care. It incorporates a wider view of best practice, incorporating person-centred care, proven delivery models, case studies and expert opinion on political priorities. However, it does not offer a dedicated exploration of the guidelines themselves, hence the 2019 Understanding heart failure guidelines collection should be an important complementary resource.
Our huge thanks to the Project Advisory Group who supported us in the drafting stages: Dr Josep Comín-Colet, Professor Salvatore Di Somma, Professor José Ramón González-Juanatey, Ms Penilla Gunther, Mr Neil Johnson, Mr Steven Macari, Ms Sandra Mulrennan and Ms Patricia Vlasman.
Heart Failure Policy Network
Get in touch
We are certain that these guides will form a valuable resource in moving HF policy advocacy forward, and we’d certainly like to hear from HF advocates as they use them.
Email us at firstname.lastname@example.org and tweet us @HFPolicyNetwork
Please note: the guides in this collection do not replicate or supersede established clinical guidelines, and are not designed for the purpose of formal professional training or accreditation, patient therapeutic education or clinical decision-making. In all such cases, clinicians, patients and service managers should consult European and national guidance as appropriate.
The Heart Failure Policy Network is an independent, multidisciplinary platform made possible with financial support from Vifor Pharma and Novartis Pharma. The content produced by the Network is not biased to any specific treatment or therapy. All outputs are guided and endorsed by the Network’s members, who have full editorial control. All members provide their time for free.