A non-profit is using art to improve health literacy in Africa and the US.
by Portia Ladrido
In a study by Cancer Research UK, cancer has taken the lives of 8.2 million people worldwide in 2012, and 23.6 million new cases of cancer are projected to occur by 2030. Over half of the deaths caused by the disease come from countries with a low level of Human Development Index (HDI), a measure of life expectancy at birth, education level, and a nation’s gross national income.
It can be deduced from the aforementioned data that the least developed countries are also those that are more prone to the disease – whether it be because of their lack of basic medical supplies or because of traditions or misinformation that interfere with accessing available medical treatment.
According to the Africa Oxford Cancer Foundation, countries in Africa have the least resources – radiotherapy can only be accessed in 21 countries out of 53. The region also has limited oncologists and in fact, some African dialects do not even have a word for cancer. This is a concern that OncArt, a nonprofit based in Boston, Massachusetts, is addressing by creating an online repository that connects clinicians with local artists who can illustrate cancer facts that could help people in resource-poor areas to better understand the disease.
Julia Shivers, the co-founder of OncArt, talks to INKLINE about how they’re tackling this issue in Africa and as well as in immigrant communities in the US.
INKLINE: How did this all come together? What sparked the idea and what prompted you to do this?
Julia Shivers: Last February, I met a team of people at a hackathon for global cancer innovation sponsored by CAMTech, Massachusetts General Hospital and Massachusetts Institute of Technology. People from all disciplines came together to contribute ideas for transforming cancer prevention, diagnosis and care in resource-limited regions. I was inspired by Chiara Eisner’s idea to recruit artists to illustrate complex medical concepts for people in regions with high rates of advanced disease and low rates of health literacy.
Chiara Eisner and I have taken this idea forward for the past year and recently launched a responsive design web app that offers an online repository for these artworks. These messages can be transferred electronically by mobile phone or other device or downloaded to print from the library. The platform also offers a trademarked collaborative design tool so that clinicians and artists from all over the world can meet to create these new messages.
The signature aspect of this is that local artists give health messages a cultural authority that many patient education materials lack. For example, available patient education materials show faces and activities that are unfamiliar to a Latina or Ugandan woman, making identification difficult and complicating reception of the information.
I: What would you say are the basic pillars of OncArt?
J: The mission is to create new patient education materials. The basic pillars are context, communication, and connection. It’s through these new materials that people may be able to pass it on to their families.
Here’s an example of the impact of OncArt. In southwestern Uganda, Namayega Allen Milly, the Managing Coordinator at the Mbarara Regional Referral Hospital Pediatric Ward, introduced us to a muralist named Baguma Emmanuel Manyumba (“Emma”) from Bugoye, Uganda. We decided to create childhood cancer awareness materials for families. Emma and Allen interviewed local families about myths that interfere with people going to health clinics, and they found more than 12.
Since a calendar is a popular item that many people have in their homes, we decided to create a cancer awareness calendar featuring 12 of the most important myths, such as cancer is contagious; you can catch cancer by wearing used clothing; cancer is a death sentence; cancer only afflicts the rich and only the rich can afford to cure it; cancer is a punishment from god; or a witch doctor can both cause and cure cancer.
All of these “facts” are misinformation and need to be corrected, but it’s very hard to correct from outside the culture. So finding the local artist, Emma, to illustrate these was a very powerful mechanism and it’s been very successful there. They created a calendar, we printed the calendar, and the calendar went on to families through a clinic. Everybody wanted one.
All of these “facts” are misinformation and need to be corrected, but it’s very hard to correct from outside the culture.
We also had leaflets with cancer facts and early symptoms that were circulated by the Clinic. When someone in Uganda develops a lump that does not go away, this person can be shunned; hidden; divorced; lose his or her job; and as a last resort, when the small lump advances to a stage that is unmanageable, this person may go to a witch doctor for treatment that can cause more harm than help. This is a tragic sequence that can be changed with new information and understanding.
I: How do you find these local artists? How do you connect them with clinicians and make sure that these two parties can work together?
J: Finding the artists is really through friends, persistence, and just putting the word out. We’re an early stage startup so that’s how we had to go about it. In terms of connection and communication, Whatsapp has been our lifeline. Oftentimes, in many of these low resource regions where we’re targeting our work, the Internet is exotic. You have to walk miles to go to an Internet cafe.
Many people in Uganda have flip or feature phones with bundled services including Facebook. Facebook Messenger works well for communicating, as well as WhatsApp, and both send videos and photographs. When an artist produces work, they scan and send it to us for upload to our web app Library. They can also send photographs of their work by mobile phone.
We also work here in the Boston area to raise health awareness for local immigrants and refugees. Particularly now in this political climate, there is a fear of deportation when seeking medical care at a hospital or clinic. We are contributing to a “Immigration Safety Toolkit” with a group of healthcare law advocates here in Boston.
I: Was choosing Africa purposeful? Or did OncArt know an expert who was already working in the region?
J: Purposeful in so far as advanced rates of cancer are high there and Uganda fits the profile. We have a strong team of clinical advisors who are global health experts with experience in Uganda. They vet our materials to fit the available infrastructure and helped us keep our materials credible and useful. One of our first advisors Dr Thomas Randall has worked in Uganda and with the National Cancer Institute. His opening speech at the Global Oncology Hackathon on cervical cancer inspired us, and his advice and direction have been invaluable.
I: What are the usual challenges that OncArt faces day to day or challenges that you’ve seen whilst doing this project?
J: Accurate information is a really powerful tool for learning outcomes. We’re trying to be part of improving health literacy because there are many obstacles to getting the facts that people need.
Illiteracy can be a problem as well as translation into the local languages that aren’t Google-able. For instance, in the city of Cases in western Uganda, you have 7 local languages, including Rutooro, Lhukonzo, Runyankore, Kiswahili, and Rukiga. Our artists contribute translations for their communities so that the material has greater relevancy.
Finding people who have the time to be part of our cause, both artists and clinicians, can be a problem, but we keep finding people. We all need accurate health information. Context and collaboration are two tenets of effective global health and we’re trying to contribute by facilitating and inspiring new collaborations between artists and clinicians to improve health outcomes.
I: What has been the most gratifying thing about operating OncArt?
J: Building the relationships. Working with Chiara, finding and working with the artists, and managing the back-and-forth of vetting with our clinical team. Seeing the life cycle of the art, from concept and the first draft with its medical text to vetted and uploaded is gratifying. Working in this cross-cultural, cross-Atlantic way is elevating.