In 2018, the International Myeloma Foundation’s Patient & Family Seminars made improvements on both a local and global level. The unique and successful practices observed in individual countries can now serve as models to incorporate positive change into all of our seminars. These successes help to increase awareness and advocacy of multiple myeloma. I would like to highlight a few of these success stories.
(Croatia, Zagreb PFS)
Our mission is to continually increase the awareness in myeloma through education of patients and caregivers. However, it is also crucial to educate and create awareness among young doctors. Mijelom CRO is dedicated to deepening the communication between patients families and healthcare team. One of the ways to do so is by involving future doctors and nurses in all activities, in particular their educational meetings.
Mijelom CRO brings patients, their families with healthcare professionals together, outside of the hospitals in friendly, supportive and educational meetings. At the seminar in Zagreb, patient meeting was run with support of medical students. They volunteered their time to assist with the operation of the seminar, while also benefitting from an opportunity to listen to the presentations on novel therapies and scientific outcomes delivered by experts in their field.
After the seminar, these volunteers sat down for a discussion with our guest speaker, Professor Jean Luc Harousseau. The young doctors shared their perspectives, objectives, and thoughts about the seminar. Professor Harousseau personally answered questions posed by these doctors one by one. It was an incredible opportunity to influence the next generation of myeloma doctors. While serving their community, these volunteers were educated and inspired as well.
Good Old Times
(Czech Republic, Ustupky PFS)
The Patient & Family Seminar in Czech Republic was located in Sec – Ustupky, at the center of the country. Czech Myeloma Group has a tremendous amount of experience organizing seminars, as they have been running seminars since 2006. This year, they provided an engaging format to engage attendees in their rich history. They used their archive of visuals from their past collaborations with different countries, local support groups, associations, and also IMF’s first visit to the country to kick off a seminar in Prague. The team created a beautiful poster to represent each year’s activities with brief explanations and put them on the walls of the venue. These historical records help support the value of the organization. The visual representation of the strides being made in education and awareness also spread hope to the community.
Piece of Paper
(Denmark, Nyborg PFS)
Sometimes a simple improvement can reap the greatest change. Dansk Myelomatose Forening had this experience. They prepare a dossier for all attendees that includes the presentation slides from the experts. These papers are very helpful for taking notes, absorbing the details, and even discussing the milestones of the presentation once the presentations have ended. If you missed an important point or didn’t understand a topic, the dossier can serve as your guide. This simple improvement is highly recommended for all Patient & Family Seminars.
Psychology on Stage
(Spain, Madrid PFS)
The most effective new practice this year was experienced during the Madrid Patient & Family Seminar. CEMMP started their seminar with a lecture for patients on the psychology of living with myeloma diagnosis and treatment. Oncho-Psychologist Fátima Castaño led a panel discussion with 2 patients and 2 caregivers (relatives) on the stage. They explained their personal experience beginning with the diagnosis period and moving on to their experience with the psychological challenges of treatment. This discussion lasted almost two hours in front of a highly engaged audience. The experiences of the panel reflected many details in the lives of the listeners. To conclude, the audience posed several questions for the speakers. This was the first time such a session had been provided, and although it was emotionally difficult for the patients in attendance, everybody walked away having gleaned some important lessons. In fact, attendees could be heard continuing the discussion in small groups during the coffee break.