Grace Tillyard is communications specialist, designer and researcher and she works between London and Port-au-Prince, Haiti. She is the implementer of the SPARC MBC project and she designed the program they are currently rolling out in Haiti with Project Medishare and Innovating Health International. She is 29 years old and has been working in international development for six years. She has an undergraduate degree in History and a Master degree in global media and transnational communications from Goldsmiths College, London. She began designing the SPARC MBC challenge award with the help of the Goldsmith department in 2014. Read more on this here.
What is your greatest achievement related to the SPARC project so far?
I am most proud of our patient support group, which is now more than 140 women strong, and our health ambassadors program. We have trained 30 of our patients to be health ambassadors for women cancers in their communities. When a woman in the community thinks she might have a breast problem they go to one of our health ambassadors and they connect her with our treatment centre if they think it is something suspicious. They also hold education sessions in their communities and do a lot of testimony as well.
How difficult was it to find metastatic breast cancer patients willing to become Breast Cancer Ambassadors? What does their training look like? What does their role as Ambassadors entail?
We needed to do a lot of empowerment and engagement work before the MBC cancer patients became ambassadors. Initially – more than training – we had to build their confidence and address some of their very pressing social and emotional needs. Almost 40% of the patients in our support group have been victims of physical, sexual or economic violence most often inflicted by their partner because of their cancer. We really had to start by restoring self-belief before going into any formal training. After six months of building a group, we trained 30 women as Breast Cancer Ambassadors. They love the programme and so do we. It really is a way to vindicate what happened to them, we turn their experience of cancer into an attribute that has social value. The same communities that once shunned them, now respect and understand their role as a community resource.
What is your philosophy towards your work?
Empathy is an important concept in design and is the foundation of any social innovation. It means understanding people's needs, skills and perspectives and designing programmes and initiatives with them. In order to build solutions every program must start with stepping into other people's shoes. This can take the form of joint research, consultations and spending time with professionals and communities.
What character trait makes you good at what you do?
I always try to understand what people need, and I use my emotion to guide a lot of what I do. Some might say this is a weakness, but for me it is a pathway to understanding.
Why weren’t you able to carry out your project before being part of the SPARC program?
The breast cancer treatment program recognised the need to include psycho-social support in their services and wanted to develop community-based communication and education tools. We looked for a year for support for this initiative but didn’t find many donors that were interested in funding outside of treatment, particularly in a low-resource setting. The SPARC MBC award gave us validation, support and a platform to meet other people and organisations that also believed in prevention and education around metastatic breast cancer.
Do you feel that the community’s perception of metastatic breast cancer has evolved since the program started?
The community’s perception of MBC has evolved considerably. Our approach was to create joint support groups (both MBC patients and non), programmes, trainings and initiatives to foster empathy and understanding between the patients and family members. In trying to not force the distinction between metastatic and non-metastatic patients we have seen less stigma and mutual protection mechanisms created amongst the group. We have worked very hard to try and change the language around cancer, focusing on women ‘living with cancer’, reinforcing the possibility of a cure in a society that largely believes that cancer is a death sentence as well as validating the lives of MBC patients. In order to respond to MBC patients specific needs we have created the ‘Legacy program’ in partnership with a Haitian social business where vulnerable women have the opportunity to earn a salary and leave a fund for their young children’s education when they pass. Read more about this programme here.
For more information on the SPARC MBC challenge please click here.