COMPASS 2026: Charting a Common Course for MPN Patients and Carers
On 12 September 2026, Sejati Initiative held COMPASS 2026 (Community for MPN Patient Awareness and Shared Support) at Novotel Johor Bahru City Centre. Fifty-five people came together for a full day of education, psychosocial support and shared conversation. They included people living with myeloproliferative neoplasms (MPN), their caregivers, healthcare professionals and members of our committee.
A day designed around the whole person
The programme combined clinical knowledge with emotional and physical wellbeing:
Essentials of MPN: Dr Wong Yih Seong, Haematologist at Hospital Sultanah Aminah Johor Bahru, on what every patient should know
Mental health and emotional wellbeing: Mr Tan Zong Yan, Clinical Psychologist at Labyrinth Psychological Centre
Navigating co-morbidities: Dr How Mei Yee, Family Physician and Vice President of Sejati Initiative
MPN in Motion: the MediSpring Physiotherapy and Rehabilitation Centre team on building strength, mobility and confidence
Panel discussion and small group conversations: a space for patient and caregiver voices, closing with COMPASS Conversations: What Matters Most to MPN Patients and Carers
What we heard: patients, clinical trials and shared decision-making
Our panel, Beyond Treatment: Patients, Clinical Trials and Shared Decision-Making in MPN Care, brought together a patient representative, a caregiver and clinicians. Several themes stood out.
Awareness is the main barrier. Hesitation about clinical trials usually reflects limited understanding of what a trial involves, not unwillingness. Information works best when it speaks to a person's own disease stage, treatment history and daily concerns.
Nurses and doctors are trusted bridges. Frontline clinicians are the most effective channel for introducing trials, and they need clear tools and enough time for these conversations.
Local context matters. Beliefs about illness, family decision-making and practical constraints should shape recruitment, consent and study logistics from the start.
Language matters. Materials only available in English, or in clinical language, exclude many patients. Plain, translated information is essential.
Caregivers help make the decision. They should be included in trial awareness and engagement, not addressed as bystanders.
We are grateful to our event sponsor Novartis, and to our collaborators Labyrinth Psychology and Training Centre and MediSpring Health Group. Thank you also to every speaker, panellist and volunteer, and above all to the patients and carers who shared their time and experiences with us.
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