In the aim of empowering organisations worldwide to address the specific needs of metastatic breast cancer (MBC) patients in their native countries, UICC has launched, in partnership with Pfizer, the Seeding Progress and Resources for the Cancer Community (SPARC) Grants.
Through a series of portraits, UICC would like to introduce the SPARC grantees and highlight some aspects of their individual experiences. Today, we introduce you to Ana Milena Gil from IECAS in Colombia.
What made you want to participate in the SPARC MBC challenge?
We found that the SPARC MBC challenge was a good way to join efforts in order to develop solutions addressing the needs of a clinical subgroup of patients (the metastatic breast cancer patients) rarely targeted by this kind of initiatives. We were convinced that through the SPARC grant, we would be able to expand and to strengthen our network as well as to have the technical, scientific and economic support of an organisation with extensive experience and international recognition in the fight against cancer, UICC.
You have conducted several focus groups for patients as well as for caregivers. What was their aim? How was the experience?
The aim of the focus groups was to find out more about the concerns and information needs that both patients and caregivers identify from their own experiences along the disease, and that can be fulfilled through the web tool we are developing. The experience was very rewarding. The availability of all participants was permanent and their contributions not only provided us with useful information for research purposes but also allowed me to realise about the key role played by patients and caregivers when it comes to transforming problems into real solutions. These solutions should always be designed, implemented and evaluated according to patients’ and caregivers’ own experiences, expectations and needs.
What is your philosophy towards your work?
As a health researcher, the main principles guiding my career are ethics and service. The possibility of developing tools that improve people’s welfare, whatever my role may be within a research project, represents for me an obligation that I take with lots of pleasure and is the main incentive to move forward with my tasks.
Who has inspired you in your life and why?
I could refer to many people but will mention only some of them that I consider the main pillars of my professional and personal development. First I must mention my parents, who throughout my life have been an example of strength, honesty and love for their family, for the people around them, within their work (which was not always under the best conditions) and in life in general. Secondly, I could cite the Czech writer Milan Kundera and his incredible ability to capture situations, attitudes, thoughts and characters, totally opposite without showing any preferences or making any judgments. He is my source of inspiration when I need to be conservative against what science and my work as a researcher can mean. In regards to adopting good practices in general, this could be summarised by Franz Kafka’s quote: "In your struggle against the rest of the world, I advise you to get on to the side of the rest of the world."
What are the next steps of your project?
In the next phase of the project, we are aiming at developing some solutions to address the needs that have been identified in the previous phase. To do so, some working meetings will be held. During these meetings, the difficulty to access health information online will be addressed. Then, health technology and visuals researchers and experts will be discussing the potential web content and will determine the type of material to be used, such as multimedia tools (videos, photos, texts etc.). The last phase will be about the incorporation of such material on the website.
For more information about the SPARC initiative and related projects, please click here.