Global Patient Support
Getting the right care sometimes means cancer patients must travel away from home to a treatment facility, but extensive travel—as is often the case in the countries where we work—creates formidable logistical, physical, emotional, and financial burdens during what is already a challenging time.
When cancer services are only offered in one or two large cities in a country and when machines and equipment break down regularly, patients must spend long amounts of time away from their families and homes. If they don’t have relatives to stay with in these cities, they must find a place to stay. Many are faced with limited options and resort to sleeping in hospital corridors, on the grounds awaiting treatment, or in other unsecure places.
In addition to securing lodging, patients are often overwhelmed by costs related to transportation to get to and from the large cities and to and from treatment services on a consistent basis and may delay or abandon a treatment plan as a result.
And for many patients seeking cancer treatment, it may be the first time they’ve ever entered a hospital and their treatment will require them to interact with many different wards and personnel in the process. Many in this large and unfamiliar setting get lost in or delayed by the process, which causes high levels of stress and can negatively impact patient outcomes.
Building on our organizational expertise in implementing supportive enabling services to reduce barriers to care, we are currently working in Kenya and Uganda with hospitals and patient hostels. Our work is focused on helping hostels:
- set up effective referral systems,
- establish minimum standards of care,
- hire, train and mentor appropriate hostel staff,
- set up effective operations and management systems, and
- develop other patient support services that are complementary to the hostel setting like Permagardening.
All of the organizations that manage hostels are also participating in our NGO-strengthening initiative, the SOURCE Program so that they can benefit from new skills in resource mobilization, human resources management, and operations and administration, all of which will directly impact the sustainability of the hostel.
The American Cancer Society has a long history of working to reduce barriers for cancer patients in the United States, largely through a comprehensive patient navigation system. It is now expanding its patient navigation work into other countries. Our Global Health team is beginning this work in Kenya at Kenyatta National Hospital (KNH), where cancer patients face significant challenges. Cancer now ranks third as a cause of death in Kenya, with approximately 40,000 new cases of cancer diagnosed annually and an estimated 28,500 Kenyans dying of cancer every year.
The new navigation program will support patients at all stages of their journey, identifying and linking them with available resources, and building cancer literacy among the patients, their family members, and caregivers. The experiences gained through this partnership will inform the development of other patient navigation initiatives globally.
In early 2016, the American Cancer Society along with national referral hospitals, Ministry of Health officials, and cancer-focused organizations in Kenya, Uganda, and Ethiopia launched a suite of comprehensive patient education materials on cancer that have been in development for two years. For the first time, cancer treatment facilities and local NGOs will be able to educate patients and caregivers using materials designed for their context in one or more local languages.
In addition to developing these materials, the American Cancer Society partnered with the Johns Hopkins Center for Communications (CCP) Programs to develop an adaptation toolkit that describes and facilitates other ministries of health, hospitals, or cancer-focused organizations to lead their own cancer education materials development process.
This is a new area of work for the American Cancer Society globally, though we have a long history of addressing transportation barriers in the United States. Our focus in this area will be to work with our local in-country partners to identify and apply locally-appropriate and innovative transportation solutions.