At the European Heart Network (EHN), we are highlighting the leadership of key patient organisations in our network. In this edition, we feature the Swedish Heart and Lung Association and its new leadership. We spoke with Ulrica Sundholm about their vision, priorities, and the evolving role of patient advocacy in Sweden and across Europe.
“I am truly impressed by the strength and dedication that already exist within the Swedish Heart and Lung Association. There is so much good in this organisation that must be preserved and further developed.
That said, I firmly believe that both society at large and the healthcare system, in particular, need an even stronger patient movement to tackle the challenges ahead. Sweden has a long tradition of a strong and democratic civil society, but we also face significant challenges in remaining relevant and engaging for people.
I am passionate about building Sweden’s largest patient organisation—one that truly reflects those affected by heart and lung diseases. Together with public institutions, healthcare professionals, businesses, and others, we must ensure that Sweden continues to provide world-class healthcare, accessible to all.
This means growing our membership base—because the more we are, the more we can achieve. With the collective strength of our members, we can become an even more relevant advocate for the key issues that matter most to heart and lung patients and their loved ones. We also need to advocate more effectively and become a natural presence at decision-making tables.
There is much to learn from patient movements across Europe and our sister organisations in other countries. I truly look forward to gaining insights into how others successfully drive change and contribute as co-creators in healthcare.”
“It is striking how little the Swedish healthcare debate actually discusses how patients and their loved ones experience care. This is something I want to change. We must truly put the patient at the centre—not just in words but in action—ensuring that healthcare development, investments, and reforms focus on improving patient well-being. Sweden excels at measuring and tracking healthcare interventions and treatments. We have extensive data available at an aggregated level. Yet, no one can confidently answer how cardiovascular patients actually feel and how they are doing overall. This must change. Evaluations and follow-ups should be based on whether outcomes improve for patients and those closest to them.
“It is striking how little the Swedish healthcare debate actually discusses how patients and their loved ones experience care. This is something I want to change. We must truly put the patient at the centre—not just in words but in action—ensuring that healthcare development, investments, and reforms focus on improving patient well-being.
Sweden excels at measuring and tracking healthcare interventions and treatments. We have extensive data available at an aggregated level. Yet, no one can confidently answer how cardiovascular patients actually feel and how they are doing overall. This must change. Evaluations and follow-ups should be based on whether outcomes improve for patients and those closest to them.
Another key area is ensuring that patients are represented and truly involved at all decision-making levels. It is not enough to invite patient representatives to a meeting, check a box, and move on. We have made great progress, but there is still much to be done.
We need clear expectations from both sides—what do policymakers and healthcare leaders expect from the patient movement, and how can we meet those expectations effectively? At the same time, we need support and resources to fulfil this role. Many of our members are living with illness, which affects their capacity to participate. We also face financial constraints and cannot yet claim to represent a fully diverse and inclusive cross-section of cardiovascular patients. This must change.
Additionally, we must consider how we equip our members to represent not just themselves but all patients with heart and lung conditions. This is no easy task, but I believe we can learn a great deal from both our sister organisations across Europe and Sweden’s strong labour movement, which has built a long-standing tradition of advocacy and representation.”
The Swedish Heart and Lung Association is taking concrete steps to strengthen patient representation and involvement:
Over the past year, the organisation has developed networks of diagnosis-specific peer supporters. By reaching out, individuals can receive guidance and support from others who have been in similar situations. In a society facing challenges with loneliness and isolation, this initiative has been highly valued.
Members are supported in adopting healthier habits through local activities and digital resources. These range from CPR training and physical activity to heart-healthy nutrition.
The organisation is a strong voice for individuals affected by heart, vascular, and lung diseases. Through advocacy efforts, it works to ensure the best possible healthcare and quality of life. For example, it collaborates with networks to push the government to implement a national heart health strategy.
The association takes pride in supporting research that prioritises the patient perspective, ensuring that scientific advancements genuinely address the needs and experiences of those living with cardiovascular diseases.
“Like many others, we are actively reflecting on the impact of AI in healthcare. AI offers significant advantages, particularly in early detection and risk assessment, where its ability to process and analyse data raises great hopes. The same applies to fields like precision medicine and self-care, which is a crucial area for us as a patient organisation to explore further.
Could AI-driven tools be used to build better, more individualised support for patients? For example, through improved reminders, test result tracking, and personalised information? These innovations could empower patients to take a more active role in their own care.
It is absolutely essential that the patient’s voice is included in all AI-driven developments in healthcare and social care. AI presents incredible opportunities, but as a patient organisation, our role is to ensure that innovation happens with and for patients. By staying actively involved in discussions about AI in healthcare, we can help shape solutions that truly improve the lives of people living with heart disease.
At the same time, we must navigate this issue wisely, particularly in relation to research and evidence, while ensuring that the human perspective in healthcare and social care is not lost—something AI can never replace.”
For more information, visit the Swedish Heart and Lung Association website.