ESC Florence Nightingale Lecture in Nurse-Led Research
Building research capacities in clinical nurse-led research: patient-reported outcomes at the core
30 Aug 2024
The presenter of this year’s ESC Florence Nightingale Lecture in Nurse-Led Research is Professor Tone Merete Norekvål (Haukeland University Hospital - Bergen, Norway), whose work founding and chairing the Patient-Reported Outcomes in Cardiology (PROCARD) research group, together with clinically relevant research projects, has helped to foster the next generation of researchers in cardiovascular nursing.
What are the key themes of your lecture?
My lecture discusses the importance of integrating the patient voice into clinical nurse-led research capacities. The past 10 years has seen a paradigm shift in how patients are having their say. Patient-reported outcomes (PROs) are very valuable in ensuring the delivery of care1 and were the subject of two task forces initiated by the ESC, one concerning clinical trials and the other concerning clinical practice. The benefit of these measures is illustrated by the CONCARD study, which investigated the follow up of individuals undergoing percutaneous coronary intervention (PCI).2 The results of the study led to the design of the PROCARD group’s digital eCardiacRehab programme, which patients are able to follow independently at home. If we are to ensure the wider benefit to outcomes of patient input, its integration across the different aspects of clinical practice will be required.
PROs remain a crucial component of research capacities. We know that bringing together specialised education for nurses in cardiology and research is fundamental to improving the management of patients with cardiac disease. However, the education and research arms of this healthcare triangle require further strengthening. Efforts, such as the university-level post-graduate education in cardiovascular nursing, the Master’s degree programme and the PhD-level nurse-led research programmes developed in Norway are good examples of how this can be achieved. The next step will be to extend research capacities beyond universities and into hospitals. We should also not lose sight of the fact that, because nurses are committed to practising evidence-based medicine, care needs to be taken to educate not only the individuals and teams conducting the research, but also those consuming and applying the findings.
What is the way ahead?
A challenge we face in exploiting advanced cardiac treatment is patient engagement and activation. We know that patients do not adhere to management plans for a whole variety of intentional and unintentional reasons.3,4 We need to have a much better idea of the enablers and barriers related to adherence and self-management, and this type of research requires multiple methods, including pragmatic clinical trials and real-world data from national clinical registries. Co-designing new treatments and modes of care delivery with patients is essential to their success. This is what I learned from my experience 20 years ago when developing aftercare for patients with implantable cardioverter defibrillators and the same approach helped in making sure that the eCardiacRehab programme was designed to meet the needs of the patients using it.
In this technological age, we also must avoid the creation of a treatment gap – a digital divide – that will disadvantage patients without the digital health literacy skills necessary to access the increasing number of digital tools available to help manage their condition.5 Nurses are key players in helping to overcome the challenges of achieving personalised healthcare plans and, as trusted partners, we are in a really good position to help our patients make their voices heard.
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References
- Moons P, et al. Eur Heart J. 2023;44:3405–3422.
- Norekval TM, et al. BMJ Open. 2020;10:e031995.
- Pettersen TR, et al. Int J Nurs Stud. 2018:88:1624.
- Norekval TM, et al. Eur J Prev Cardiol. 2023 Nov 7:zwad350.
- Ramstad KJ, et al. Eur J Cardiovasc Nurs. 2023;22:472–481.