Six great examples of sarcoma patient advocacy to follow this year!
The winners of the 2023/2024 Advocacy in Action Awards
by Gabi Ott
When sarcoma patient advocates gather from all over the world, as recently happened in Rome at SPAGN’s annual conference from April 19-21, 2024, you can be sure to not only learn a lot about the latest developments in research but also to encounter a multitude of great stories about what patients can achieve with their self-help efforts.
When listening to the presentations of this year’s winners of the Advocacy in Action Awards, I marvelled at the initiatives patient advocates come up with to improve sarcoma patients’ access to care and quality of life.
Applause for the patient advocacy work of SPAGN members
Since 2017, SPAGN has honored the impressive work of its member organizations through its Advocacy in Action Awards. A jury composed of healthcare professionals and patient advocates reviews the submissions with respect to criteria like impact, outreach, potential of adaption and replicability, sustainability, funding strategies and innovation.
Indeed, this year, the jury’s job must have been difficult, as Board member Dr. Ornella Gonzato announced not only three, but six winners! Common to all of the winners is their deep insight into the concerns of sarcoma patients, their dedication to helping them, and their professionalism in doing so.
Where can you find cancer information in rural India without a smartphone?
V Care distributes booklets on cancer-related topics
Let’s start with the example of V Care, an organization based in Mumbai, India, that was established 30 years ago, and meanwhile reaches out to 6 states in the most populous country of the world with more than 1.4 bn inhabitants. Over the past 5 years, they have helped more than 1 million patients. They have also established a special focus on sarcoma patients. Through their work in hospitals, V Care staff are aware of the challenges cancer patients face. And so they know that many patients still live in rural areas far away from the health care they need and without any connection to the digital world.
Having a reference document available while going through treatment or afterwards can help patients cope better with their problems. V Care provides patients with reader-friendly booklets in local languages on topics such as loneliness, understanding cancer, coping with guilt, sex and cancer, hair loss, moving forward, chemo, radiation, or diet.
Where can you find reliable sarcoma information on social media?
The German Sarcoma Foundation started a sarcoma information channel on Instagram in early 2023
The German Sarcoma Foundation (Deutsche Sarkom-Stiftung), on the other hand, launched an Instagram channel in early 2023 with the aim of disseminating reliable information about sarcoma via social media. Readers can be sure that what they find there is expert-verified knowledge.
Maria Brandt and her team want to combat misinformation and clear up myths about treatments and the disease. They also promote the communication of patients among themselves, and with experts. As of April 2024, the Instagram channel @sarcoma-de had reached 46,000 accounts and 390,000 views within the first 90 days of this year.
What do bone sarcoma survivors need after treatment?
Research on long-term and late effects of bone cancer survivors was the base for the BCRT guide on follow up care
Drawing on their insights into patients’ needs and the gaps in addressing them, the Bone Cancer Research Trust (BCRT) and students at the University of Sheffield, UK, aimed to produce a guide for follow-up care after a patient’s treatment for bone sarcoma has ended. The advocates are aware that there is a lack of support for managing longer-term and late effects of therapies and life-altering surgeries, which bone cancer survivors often experience.
Based on a literature review and guided by patients’ views and expert input, the guide covers the following five topics: 1. What is survivorship? 2. What is follow-up care and why is it needed? 3. Managing long-term and late effects after surgery. 4. Managing treatment- related long-term and late effects. 5. The psychosocial impact of cancer survivorship.
Who helps the friends, families and nurses of sarcoma patients?
Psycho-oncological training courses for nurses, teachers, volunteers etc in Poland
A psycho-oncological training program dedicated to the various groups of people helping cancer patients has been developed by the Polish Sarcoma and Melanoma Association and the Institute of Mother and Child. "We recognize that the rarity and complexity of sarcoma can leave loved ones feeling helpless, and we want to provide them with the support they need", said Kamil Dolecki, who presented the initiative. Their project is called #5 for psychologists, nurses, teachers, volunteers, etc. Participants are given tools and knowledge to establish and manage relationships with patients, which may have a significant impact on the patients’ quality of life. The training was developed by specialists in psycho-oncology and pediatric oncology as well as by teachers, nurses and other volunteers.
How can we improve diagnosis of sarcoma through research?
Want to know more about the funding call to improve the diagnosis of bone cancer? Click here!
In the UK, sarcoma patients have highlighted the need to improve diagnosis as one of their top priorities. At present, one in three patients have to wait at least 6 months to receive an accurate diagnosis of their sarcoma, which negatively affects outcomes and quality of life. And sarcoma research is still scarce and underfunded.
Therefore, the Bone Cancer Research Trust and Sarcoma UK have teamed up to launch a funding call in support of research that will improve the diagnosis of sarcoma, including on the use of biomarkers or artificial intelligence as well as strategies for improving health systems. The funding call is for 500,000 British pounds and is open for small and large grants. Deadline is 20 June 2024.
Can we create an evidence base for an ultra-rare sarcoma?
The mission of Dr Sydney Stern is to help improve quality of life through better research on the Tenosynovial giant cell tumour (TCGT) – a rare, locally aggressive sarcoma that causes patients to experience pain, swelling and limited mobility. A patient diagnosed herself in her younger years, Dr Stern became a researcher of TGCT inspired by The Life Raft group's saying of 'patient-powered research' and is determined to tackle the problem that there is still little evidence available.
Since 2022, she and her collaborators from the TGCT support program at the Life Raft Group have collected information from over 900 patients in 32 countries. Thus, they have created the largest worldwide database on TGCT patients covering demographics, diagnostic journeys, providers involved in diagnosis and care, management of disease and symptoms, monitoring of the disease and quality of life with the disease. With the help of this real-world information, so Sydney hopes, it will become easier to better identify the medical needs and provide multi-disciplinary and early treatments. Look for the forthcoming publication in a medical journal and a presentation at CTOS 2024! Also read her blog on her personal journey here.
And the winners are…
I really do not want to end this kaleidoscope of dazzling projects by saying who got the first, second and third prizes. To me, they are all winners.
But you are invited to look at our SPAGN news here to find out more about the winners and their presentations!
Photos and graphics were provided for publication by SPAGN by (in order of appearance): Vcare, Deutsche Sarkom-Stiftung, Bone Cancer Research Trust, Polish Sarcoma and Melanoma Association, Uli Deck, Cover photo: Uli Deck for SPAGN
Bio:
Gabi Ott is a SPAGN Volunteer and Editor-in-Chief of the Voices of Sarcoma blog.