Figures of the Heart Failure Association: Loreena Hill ( HFA Board Member and Nurse Representative 2016–2020, and HFA Secretary 2020–2022)

Loreena Hill was elected to the Board of the Heart Failure Association (HFA) of the European Society of Cardiology (ESC) in 2016 and relished the opportunity to work alongside international heart failure experts. She was thrilled to be re-elected for a further 2 years in 2018, with roles including that of chair of the Palliative Care Taskforce and co-coordinator of the Patient Care Committee of the HFA. She was appointed secretary of the Association for the 2-year mandate 2020–2022. Loreena is a full-time lecturer (Research & Teaching) at Queen's University, School of Nursing and Midwifery in Belfast. She commenced her career as a staff nurse in coronary care in the Royal Victoria Hospital (RVH), a busy regional teaching hospital. Due to family commitments, she moved to a research nurse post for 2 years, involved in clinical trials such as CARE-HF. Then in 2002 she was appointed as a heart failure nurse, under the mentorship of Prof Jennifer Adgey. No heart failure service existed in the RVH, therefore she established a nurse-led heart failure service, benchmarking on the Scottish model developed by the late Lynda Blue. The purpose of the service was to optimize evidence-based medication, provide education and support thereby improving the quality of life for patients with heart failure living in the community.1 She worked in this post for over 15 years, the last 10 with autonomous prescribing authority. During that time, she observed significant advances in heart failure treatment and care delivery, which ultimately impacted how the condition ‘heart failure’ was perceived. In 2012, Loreena's love for research led to the successful acquisition of a doctoral fellowship from the Public Health Authority (Research and Development office NI) in 2012. She completed her PhD in 2015 with a thesis entitled ‘Management of Implantable Cardioverter Defibrillators in Advanced Heart Failure’.2, 3 Her research interests remain on symptom and device management for patients in the advanced stages of heart failure.4, 5 Patients can experience multiple dire symptoms with poor quality of life. As technology continues to progress with advancement in device and surgical therapies, more and more patients are finding it a challenge to understand the information provided and be involved in decisions and advanced planning.6 Loreena's position on the HFA Board has provided her the opportunity to work with heart failure experts and improve the provision of patient-centred care, particularly during the advanced stages of heart failure illness. In 2017 I won the Nursing and Allied Professions award at the ESC in Barcelona. The abstract was based on post-doctoral work I had completed examining family involvement in the discussion and decision to deactivate their loved one's implantable cardioverter defibrillator.7 A total of 1572 vignettes were electronically answered by 262 international healthcare professionals (24% medical, 65% nursing and 11% cardiac physiologist). Results found that the majority of professionals believed the decision to deactivate an implantable cardioverter defibrillator should involve both the patient and family member. Furthermore, if a family member was involved professionals were more confident in the final decision that was made (P = 0.047). An increased attention is currently being given both in research and practice, to the role of the family, with recognition of the often immense burden of caring and their unmet need for support and information.8, 9 Saying all that, this experience was overshadowed in May 2019 by the privilege to meet and interview Prof Mariell Jessup in an ‘off the record’ session at the HFA congress. Her generosity of time, sincerity and openness not only was inspirational as a woman working in cardiology but also reinforced in my eyes, her standing as a true pioneer in heart failure research and clinical guidance. In 2017, the ESC Management Council established the strategic objective of patient engagement whereby patients would be empowered and involved in ESC activities. Patients with heart failure have for many years been advised to take responsibility for lifestyle modifications and medication adherence, in other words a self-caring approach.10 However, we are required to take one step further, promoting a co-design approach to activities and publications. Already the HFA has a number of activities, for example patients and professionals co-learning at a workshop in October 2019. Furthermore, the Palliative Care taskforce developed a position paper that was co-produced with patient representation. The concept of patient involvement is a growing interest and one that the HFA is fully embracing and will continue to do so in the future. I am presently involved in a number of exciting projects, focused on providing optimal care for heart failure patients in advanced stages. These include a project on prevalence and experience of cardiac cachexia, building on work led by Prof Coats and Prof Anker.11 I am also involved in a feasibility study of a psycho-educational intervention for caregivers of patients12 and an innovative European e-health project named PASSION-HF.13 I am the principal investigator of a co-design study to develop a novel educational intervention for patients awaiting an implantable cardioverter defibrillator. Future plans are in the pipeline, including an international multicentre trial to test this educational intervention. Final words—I would like to share the mantra of Benjamin Franklin ‘without continual growth and progress, such words as improvement, achievement, and success have no meaning’. Andrew J.S. Coats University of Warwick, Coventry, UK [email protected]