The new ESC/ERS guidelines and what they mean for the patient engagement movement
November marks Pulmonary Hypertension (PH) Awareness Month. For me, it’s a key moment in the year where we can collectively pause, reflect and understand what has been achieved and what still needs to be done as we work to transform PH from an incurable, progressive disease, into a long-term, manageable condition. It also allows us to come together as a community – patients, patient advocacy groups, medical societies and of course industry – to raise awareness of PH, champion people living with PH and support improvements in care.
What makes this PH Awareness Month notable is the recent publication of new guidelines from the European Society of Cardiology (ESC) and European Respiratory Society (ERS) on how to diagnose and treat PH. For the first time, the guidelines incorporate strong patient empowerment and patient engagement themes, and a plain language version has been published, making them more accessible to the patient and caregiver community than ever before.
I recently had the pleasure to sit down with my colleague, Daniel De Schryver, Patient Engagement and Advocacy Lead, Janssen EMEA, to discuss the new guidelines and what they mean for patient engagement. Here’s an extract from our discussion.
ME: It’s fantastic that the new ESC/ERS guidelines on how to diagnose and treat PH have been translated into a plain language version, making them far easier for a lay audience to understand. Why are plain language summaries so significant, Daniel, and is it accurate to say they are becoming more common?
DANIEL: I’m really pleased to report that, yes, they are becoming more common which is fantastic news for patient communities, both in PH and beyond. What’s even better is that this shift isn’t limited to guidelines – we are increasingly seeing health authorities requesting plain language summaries of clinical trials, too. This is important as many studies have shown that an empowered patient – a patient who has information on treatment and disease management so they are better able to talk about the therapeutic choice/s with their healthcare professional – can achieve better health outcomes.
Better outcomes are beneficial not only for the patient but also for the health system. Plain language summaries are a fantastic tool to allow people that have no scientific or medical background to understand and enter into co-decision making discussions with their healthcare professional, and also have better conversations about their condition and needs with their wider support networks.
ME: I could not agree more. Thinking about my own role of working in pulmonary arterial hypertension (PAH), a rare form of PH that in some cases might take up to four years to be diagnosed, patient empowerment is incredibly important. An empowered patient who has access to the right information in the right language, as we call ‘plain language’, is able to better engage with their physician throughout the diagnostic process. In rare diseases, where conditions and their symptoms may be less well understood, patients that are yet to be referred to a specialist can often start to conduct their own research online, before showing up at their doctor’s office asking, ‘could it be that I suffer from this and that disease?’
Access to plain language information also enables better understanding of risk status and discussions about treatment decisions, which are important for a condition where we know early, and proactive treatment can lead to better long-term outcomes.
DANIEL: What’s great is that co-developing solutions with patients is becoming the standard practice for industry. , It’s been recognised that it can lead to more innovation and better health outcomes for the same investment, and in the long-term actually makes our health system more sustainable. It’s important that we recognise that the end user of the solution, namely the person who lives with the condition, is the person who should decide what the solution means to them so involving them throughout the whole process makes a lot of sense.
ME: Agree, and to add to your point, it’s important that the role of patient advocacy groups is also recognised in any discussion around co-developing solutions, as they are often the conduit between the patient community and industry. From a PH perspective, we’ve developed a number of different tools and apps in partnership with the PH advocacy community across the region, all housed on the PH Human website, our hub for all patient education, solutions, and empowerment activities in PH.
This is just one of the many information portals that exist, but all serve a common purpose – to provide the information and tools to people living with PAH who wish to become active participants in their disease journey.
This is how we can support more patients to become ‘experts’ in their condition. I think it’s fantastic that patient experts where part of the ESC/ERS guidelines committee – I’d be interested to hear your thoughts on why it’s so important to involve patient experts in guideline development and / or updates and the benefits of it.
DANIEL: It’s important to remember that it’s not just about clinical data, numbers, and statistics – guidelines are also about people. As such, we need to ensure that the patients’ views are included in the guidelines – both the insights and impact on the patient community. The other thing to consider is who is the ultimate audience for the guidelines. Whilst mostly being used as a tool by healthcare professionals, we know that patients are increasingly referring to them as they seek more information on their disease and so in that sense it’s incredibly important they are readable, understandable, and able to be digested by someone who hasn’t had university training as a scientist or medical professional.
ME: The updated guidance around psychological support that appears in the new ESC/ERS guidelines is a great example of how collaborating with patient experts on guidelines can create real value. We know that receiving a PAH diagnosis can pose a tremendous amount of stress on a patient given its rare nature and potentially devastating impact – five-year survival for those diagnosed with severe PAH is just 27%; worse than many cancers. , We also know that an estimated one-third of people diagnosed with a serious, life-changing chronic illness or disease will experience symptoms of depression. It is therefore paramount that we take into consideration the mental health burden a diagnosis brings. Having this important topic included in the guidelines makes it easier for the treating physician to make a referral to a psychologist – this can help improve patient wellbeing and can also have a positive impact on patient engagement with adherence, contributing to maintaining motivation around management of PH.
I also refer back to my previous point around the importance of the patient advocacy community – they can help make sure a patient has access to the right information on where psychological support can be found in an accessible way. The more information we can provide, the more it helps patients build their vocabulary to talk about mental health and plays a role in reducing stigma.
DANIEL: This is where technological innovation also plays an increasingly important role as a vehicle for easily accessible information. For me, the first step is to engage, meaning we sit around the table with people, discuss and have processes in place that allow us to co-create and develop – if you imagine it’s like saying ‘listen, you know more about this than I do, come and sit at my table and let’s go and develop the solution that fits your needs’. Only through this process of co-creation can we formulate the future of patient-centred digital innovations.
ME: I love the table example – it’s so true. On the other hand, it’s no secret I am a huge fan of digital innovation and its applicability to helping solve some of the biggest healthcare challenges we face. One of the core messages in the new guidelines is ‘diagnose early’ – ideally diagnosis would happen even before symptoms occur, and this is where something like artificial intelligence may be of great value. That’s why we must develop better methods of predicting risk and intervening before disease onset. For example, there is potential to transform diagnostic pathways by shifting our focus towards prevention and early interception, using technologies such as artificial intelligence (AI)-augmented imaging.
I hope you found my discussion with Daniel to be useful. If you work in or are a part of the PH community, I’d be interested in your thoughts on the new ESC/ERS guidelines.
 PMFG.org. Plain language summaries: how patients are helping bring the fruits of research to the public. Available at: https://patientfocusedmedicine.org/plain-language-summaries-how-patients.... Last accessed: November 2022.
 Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3:e001570.
 World Health Organization. Patient Engagement: Technical Series on Safer Primary Care. 2016. Available at: https://apps.who.int/iris/bitstream/handle/10665/252269/9789241511629-en.... Last accessed: November 2022. European Lung Foundation. Diagnosing and treating Pulmonary Hypertension Understanding the professional guidelines. 2022. Available at: https://europeanlung.org/wp-content/uploads/2022/09/Diagnosing-and-treat.... Last accessed: November 2022.
 European Lung Foundation. Diagnosing and treating Pulmonary Hypertension Understanding the professional guidelines. 2022. Available at: https://europeanlung.org/wp-content/uploads/2022/09/Diagnosing-and-treat.... Last accessed: November 2022.
 Armstrong I, et al. The patient experience of pulmonary hypertension: a large cross-sectional study of UK patients. BMC Pulmonary Medicine. 2019; 19:67: doi.org/10.1186/s12890-019-0827-5.
 Dormer L, Schindler T, Williams L.A et al. A practical ‘How-To’ Guide to plain language summaries (PLS) of peer-reviewed scientific publications: results of a multi-stakeholder initiative utilizing co-creation methodology. Res Involv Engagem. 2022;8:23.
 Raredisease.org.uk. The Rare Reality – an insight into the patient and family experience of rare disease. Available at: https://www.raredisease.org.uk/media/1588/the-rare-reality-an-insight-in.... Last accessed: November 2022.
 EMA. Patients consumers. Available at: https://www.ema.europa.eu/en/partners-networks/patients-consumers. Last accessed: November 2022.
 EMA. Stakeholder engagement report. Available at: https://www.ema.europa.eu/en/documents/report/stakeholder-engagement-rep.... Last accessed: November 2022.
 Siegel R.L, Miller K.D, Jemal A. Cancer Statistics, 2015. CA CANCER J Clin. 2015;65:5–29.
 Farber H.W, Miller D.P, Poms A.D et al. Five-Year Outcomes of Patients Enrolled in the REVEAL Registry. Chest. 2015;148(4):1043-1054.
 Cleveland Clinic. Chronic Illness and Depression. 2021. Available at: https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-.... Last accessed: November 2022.