Shared decision-making for people with heart valve disease

HPP collaborated with the Global Heart Hub to develop resources for patient advocates and people with heart valve disease to support guideline‑recommended shared decision‑making

Shared decision-making for people with heart valve disease


Shared decision-making in heart valve disease has proven benefits. It has been shown to improve quality of life for people living with heart valve disease – but too often, it does not take place.

People who are diagnosed with heart valve disease can be eligible for different treatment options, with most of them involving either valve repair or replacement. In 2021, the European Society of Cardiology (ESC) and the European Association for Cardio‑Thoracic Surgery (EACTS) published new guidelines for the management of valvular heart disease, which state that ‘the patient and their family should be thoroughly informed and assisted in their decision on the best treatment option’.

Shared decision-making is not simply a case of clinicians educating a person about their illness. It involves doctors and patients working together to choose the most suitable treatment, with the patient’s personal preferences and goals considered fully alongside clinical evidence and the doctor’s expertise.

Despite the guideline recommendations, shared decision-making is still not a reality for many people living with heart valve disease. Patient organisations and advocates have a key role in supporting the implementation of this vital component of care in practice.

What we’ve achieved

HPP has been working with Global Heart Hub (GHH) to develop resources on heart valve disease since 2020. Most recently, in 2023, we led the drafting of a global, consensus-driven roadmap outlining how patient organisations can advocate for shared decision-making in their countries. This roadmap was based on the consensus of 19 leading experts from around the world who came together at an in-person roundtable event hosted by GHH and HPP.

We hope the roadmap will provide patient organisations and other advocates with the power and guidance to make shared decision-making a reality for all people living with heart valve disease in their countries and settings.

In 2022, GHH commissioned HPP to lead on the research and writing of a patient guide to shared decision-making in heart valve disease. Working with an Advisory Board comprising clinical and patient experts, we drafted a full patient guide and a one-page supporting summary, which people with heart valve disease can print and take with them to medical appointments.

The patient guide is based around key stages in the patient journey, from diagnosis to heart valve repair or replacement. It contains a shared decision-making checklist to help guide conversations with healthcare professionals. This guide seeks to empower people with heart valve disease to express their goals and treatment preferences to their care team. It does not seek to replicate or replace established clinical guidelines for the management of valvular heart disease.

Key partners and stakeholders

The following people were involved in the development of the roadmap:

  • Sandra McGonigle, Co-chair; heart valve patient and patient advocate, Ireland
  • Dr Sandra Lauck, Co-chair; Associate Professor, University of British Columbia, St Paul’s Hospital Professorship in Cardiovascular Nursing; Clinician Scientist, St Paul’s Hospital, Vancouver, Canada
  • Ishtiaq Ahmed, Consultant Cardiac Surgeon, Royal Sussex County Hospital and The Montefiore Hospital, UK
  • Professor Nina Ajmone Marsan, Cardiologist and Assistant Professor, Leiden University Medical Center; Associate Editor of the European Heart Journal; Vice-President Elect of the European Association of Cardiovascular Imaging (EACVI), The Netherlands
  • Professor Carlijn Bouten, President, Heart Valve Society; Professor of Cardiovascular Regenerative Medicine, Department of Biomedical Engineering, Eindhoven University of Technology, The Netherlands
  • Dr Anna Brand, Interventional Cardiologist and Head of Transcatheter Aortic Valve Implantation Programme, Benjamin Franklin Campus, Deutsches Herzzentrum der Charité Berlin, Germany
  • Dr Janine Eckstein, Interventional Cardiologist and Medical Director, Structural Heart Program, Royal University Hospital, Saskatoon; Assistant Professor, University of Saskatchewan, Canada
  • Professor Martine Gilard, Interventional Cardiologist, Previous Director of Interventional Cardiology Department, Cardiac MRI Unit and Cardiac MSCT Unit, Brest University Hospital; Former President (2018-2020), French Society of Cardiology, France
  • Professor Martha Gulati, President, American Society of Preventative Cardiology; Professor of Cardiology, Smidt Heart Institute at Cedars-Sinai; Director of CVD Prevention and Associate Director, Barbara Streisand Women’s Heart Centre, US
  • David Kelly, Heart valve patient; Operations Lead, Global Heart Hub, Ireland
  • Dr Krystina Lewis, Associate Professor, School of Nursing, University of Ottawa; Affiliate Researcher, University of Ottawa Heart Institute, Canada
  • Jens Näumann, Heart valve patient; CEO, Initiative Herzklappe, Germany
  • Ellen Ross, Managing Director, Heart Valve Voice Canada; Chair, Heart Valve Disease Patient Council, Global Heart Hub, Canada
  • Mandy Sandkuhler, Director of Field Services and Communications, The Mended Hearts, Inc.; Communications Manager, Heartbeat magazine, US
  • Dr Peyman Sardari Nia, Senior Consultant Cardiothoracic Surgeon, Maastricht University Medical Center; Editor‑in-Chief, Interdisciplinary Cardiovascular and Thoracic Surgery; Chair, Heart Team Academy, The Netherlands
  • Dr Ariane Scarlatelli Macedo, Chair, Cardio-oncology Clinic, Santa Casa de São Paulo School of Medicine; Researcher, Brazilian Clinical Research Institute, Brazil
  • Dr Nicola Straiton, Registered nurse; Research Fellow, Nursing Research Institute, St Vincent’s Hospital Sydney, Australia
  • Professor Hanneke Takkenberg, Clinical Epidemiologist and Professor of Clinical Decision Making in Cardiothoracic Interventions, Department of Cardiothoracic Surgery, Erasmus University Medical Center; Previous President and Senior Advisor, Heart Valve Society, The Netherlands
  • Dr Kevin Veen, Assistant Professor of Cardiothoracic Surgery, Erasmus University Medical Center; Scientific Director, European Registry for Patients with Mechanical Circulatory Support; Database Coordinator, Heart Valve Society; Research Fellow, International Consortium for Health Outcomes Measurement, The Netherlands

The following people comprised the Advisory Board for the patient guide:

  • Victoria Delgado, University Hospital Germans Trias i Pujol, Spain
  • Ruggero De Paulis, European Hospital, UniCamillus University, Italy
  • María Cecilia Salvador González, Asociación Española de Portadores de Válvulas Cardíacas y Anticoagulados, Spain
  • Sandra Lauck, St Paul’s Hospital, The University of British Columbia, Canada
  • Patrick Myers, European Association for Cardio-Thoracic Surgery, Lausanne University Hospital, Switzerland
  • Jens Näumann, Initiative Herzklappe, Germany
  • Bernard Prendergast, St Thomas’ Hospital and Cleveland Clinic London, UK
  • Katja Teichert, Meine Herzklappe, Austria
  • Wil Woan, Heart Valve Voice, Global Heart Hub Heart Valve Disease Patient Council, UK

Project funding

These documents were commissioned by Global Heart Hub and produced by The Health Policy Partnership. The initiative was supported by a grant from Edwards Lifesciences and Medtronic.