Vienna, September 11th 2025. To mark MPN Awareness Day, AOP Health has launched the second season of the German language podcast “Will everything be different now? Life after and with a serious diagnosis.” (“Ab jetzt ist alles anders? Leben nach und mit einer schwerwiegenden Diagnose.”) focusing on health literacy and informed decision-making.
Myeloproliferative neoplasms (MPN) are a group of rare, chronic blood cancers, in which the bone marrow produces excessive amounts of blood cells – including red blood cells, white blood cells, and platelets. This dysregulation can lead to a range of health complications. These conditions typically progress slowly and may develop over the course of several years.
A form of MPN is Polycythaemia Vera (PV), a condition in which the bone marrow continuously produces too many red blood cells, increasing blood viscosity and making the blood “thicker”. This can result in circulatory problems, thrombosis, or embolism.1 Despite the severity of the disease, most patients with PV have a near-normal life expectancy if diagnosed early and treated appropriately. The incidence is around two cases per 100,000 inhabitants per year. 2,3
Make Informed Decisions – Live Independently
The first season of the podcast explored the mental and psychological challenges that come with a serious diagnosis. The second season now focuses on informed decision-making. Patients with rare diseases, such as myeloproliferative neoplasms (MPN), often face unique barriers to accessing information and medical expertise. The podcast aims to empower them to take an active role in managing their condition and make informed, self-determined decisions.
High Demand for Information
Studies show that patients often feel overwhelmed or insufficiently involved in medical decision-making, expressing a clear desire for more information and greater participation. According to an unpublished survey4 commissioned by All.Can Austria, 53 percent of respondents whished they had received more information at the time of their diagnosis. 44 percent of the cancer patients reported feeling little to no involvement in decisions about their treatment. Research indicates that well-informed patients respond better to medical therapies, adhere more closely to treatment plans, and take medications more consistently. Shared decision-making between patients and physicians can positively influence the course of illness and improve overall outcomes.
Guidance for Difficult Decisions
The second season of the podcast, featuring five new episodes, is designed to offer practical support for navigating complex medical choices. Listeners hear from patients who have faced challenging decisions, psychologists specializing in decision-making, and experts in patient communication and health literacy. Together, they take a behind-the-scenes look at how medical decisions are made—and offer concrete tools to help: from tips on understanding medical terminology to assessing complex risks. Topics include:
- Decision-making processes and psychological challenges: The first episode addresses the psychological aspects of decision-making, such as the fear of making the "wrong" choice, coping with uncertainty, and the role of intuition. It also addresses the sense of overwhelm many patients experience after receiving a diagnosis, and raises the question of whether doctors should make all the decisions.
- Understanding medical language and filtering information: The episode "Wie werde ich zum informierten Patienten" (“How Do I Become an Informed Patient?”) offers practical advice on how to read medical information, identify misinformation online, and find neutral, trustworthy sources. It also explains how to interpret package inserts and determine how much information is truly necessary and helpful.
- Assessing risks and making rational decisions: Psychological effects can distort how we perceive risk. Examples include overestimating immediate dangers, feeling a false sense of control, or being influenced by how information is framed (e.g., “90% survival rate” vs. “10% mortality rate”). Understanding these mechanisms can help patients make better decisions.
- Participating in clinical trials: One episode focuses on the decision to take part in a clinical trial, discussing both personal and societal benefits, patient rights, and how to assess the credibility of such studies.
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Shared decision making: This episode explores who should be involved in medical decisions and how shared decision-making can be implemented. It discusses whether family members—such as partners or children—should be part of the process, and what shared decision-making between doctors and patients truly means in practice.
