5 Ways Patient Navigators Are Helping Women in Uruguay

Earlier this month, we launched our newest Patient Navigation Program in Montevideo, Uruguay. At Jardines del Hipodromo, a community health center in Uruguay’s capital city, two patient navigators are helping women with abnormal Pap tests receive the follow-up care they need.

 

Pap tests are an important step in the early detection of cervical abnormalities and critical for the prevention of cervical cancer. Cervical cancer is one of the most common cancers affecting women in Uruguay and other low- and middle-income countries, and despite a comprehensive national prevention plan, the disease continues to impact the most vulnerable women in Uruguayan society – women in the public sector, young and single mothers, and those with lower educational levels and socioeconomic status.

 

In order to detect and prevent the progression of cervical cancer, Pap tests are recommended for every women between 21 and 69 years of age. However, the proportion of women who receive a Pap test in Uruguay is low, and among those who do receive a Pap test, few know the results of their test or move on to receive the recommended follow-up care. The important thing to know about cervical cancer is that it is preventable – through screening, early detection, and timely follow-up, no woman should have to suffer from it. Yet women in Uruguay and other low- and middle-income countries are still presenting with cervical cancer at advanced stages and, as a result, are dying from a preventable disease.

 

Patient navigation is one important and cost-effective way to enhance access to health care for underserved and vulnerable patients who suffer from – or are at great risk from suffering from – cancer. Patient navigators are specialized health care workers that operate at the intersection of social work, community outreach, and patient support, and they are important liaisons between patients and their health care teams. In Uruguay, our patient navigators are there to help women understand their Pap test results, know what they should do next, access existing health resources, and overcome barriers to receive the follow-up care they need. In this way, navigators are supporting women as they “navigate” the health system to access life-saving screening and treatment, thereby improving patient outcomes and cancer mortality.

 

Here are five important ways in which patient navigators are helping women in Uruguay:

 

1. Delivering test results: In a fragmented health system, sometimes just knowing your test results can be half of the battle for women receiving recommended Pap tests at their local health center. In Uruguay, there is a very important national plan to prevent cervical cancer, and the national program reads Pap tests from around the country to determine whether they are normal or not. Unfortunately, those results are not delivered back to the health center where the Pap test was performed. Even though women are supposed to receive a call from the national program with their results, the health center has no way of knowing which patients need follow-up care or if the women in their clinic are even receiving these calls. As part of the new Patient Navigation Program, navigators will personally call every women in the health center with an abnormal Pap result in the past two years to deliver the results.

 

2. Coordinating next steps: So your results have come back abnormal…now what? Once a woman learns of her Pap result from the navigator, the navigator will tell her what the recommended follow-up care is. The woman might need to come back for a repeat Pap, she may need a different test, or sometimes she will have to go to a specialty health care center for follow-up. The navigator will know this information and know how to help the woman get to where she needs to be – either by scheduling the follow-up appointment, informing her about clinic hours and days of services, or connecting her with a gynecologist to learn more about her options.

 

3. Overcoming barriers to care: Oftentimes, it isn’t enough to simply have a follow-up appointment scheduled. Patients are often faced with barriers that prevent them from showing up to their appointment or continuing to attend important follow-up appointments in the future. Work, family obligations, and childcare are some of the most common barriers that patients – especially women – face when trying to find time to go to the doctor. Other barriers may include lack of proper health insurance paperwork, difficulty reading or writing, language barriers, or lack of transportation to the clinic. The navigator is equipped to help with each of these issues – either by helping directly with the filing of paperwork for health insurance or patient registration, or connecting the patient to community resources for help with childcare or transportation. Sometimes something as simple as being able to purchase a discounted bus pass can help a women attend a lifesaving follow-up appointment.

 

4. Educating and empowering: In addition to all of the “logistical” barriers a patient could face, there are educational and psychological barriers that keep patients from attending appointments and making the most of their time with their doctor. Navigators also work to help patients understand what an abnormal Pap test means, as well as the importance of Pap tests, follow-up appointments, and both initiating and completing medical treatment. In this way, navigators can help empower patients to take an active role in seeking out healthcare, so women can continue positive health-seeking behaviors in this and other aspects of their health. By educating women about the importance of taking control of your health, the navigator can have a “ripple effect” in the community that isn’t limited just to the prevention of cervical cancer, but extends to other aspects of personal and family health.

 

5. Providing emotional support: Finally, a navigator provides emotional support throughout a woman’s journey to seek out her follow-up care. The anxiety that comes with an abnormal test result can be a barrier in and of itself, and many women feel shame or fear, which prevents them from addressing the issue early. They also worry about the impact on their families and jobs, and a navigator is there to connect women to support groups or simply provide emotional support by listening to and empathizing with them. Having an advocate dissipates some of the anxiety associated with coming to the health center to see a doctor, perform another test, or start treatment for a disease, and as a woman is shuttled around from doctor to doctor within a fragmented health system, a navigator can be a friendly face or an extra lifeline in a time of need.

 

In these ways, patient navigators facilitate access to timely and quality care and help create a more positive healthcare experience, which lead to better health outcomes and greater patient empowerment. Our patient navigators are working to change the way follow-up care is provided to women in Montevideo, and their work will undoubtedly have a positive impact on the health center, the community, and the health system.

Why Do LMICs Need National Cancer Control Plans?

When most people think of health in low- and middle-income countries (LMICs), they think of infectious disease. Infectious disease has, after all, been the most pressing health concern for the less developed regions of the world, and it oftentimes commands the attention of both media and global health philanthropy worldwide. However, what most people don’t realize is that non-communicable diseases, such as cancer, are overtaking infectious disease as the leading healthcare threat in these LMICs. And when the health system needs to divide its attention between what we are now calling the “double burden” of communicable and non-communicable diseases, it can get overwhelmed.

 

It is easy for public health officials to wave off the more gradual growth of non-communicable diseases in these countries, especially when patients are suffering from acute infectious illnesses that seem to demand more immediate attention. But as cancer incidence in LMICs rises due, among other factors, to aging, Western lifestyles, cancer-causing infections, and carcinogenic environmental factors, governments and health ministries cannot stand idly by. The burden of cancer in LMICs is now greater than that in more developed countries, as more and more patients are dying of advanced stage disease.

 

It is time to take action in LMICs to prevent, detect, and treat cancer as early and effectively as possible, and this is accomplished through national cancer control plans (NCCPs). 

 

According to the World Health Organization, an NCCP is defined as “a public health program designed to reduce cancer incidence and mortality and to improve the quality of life of cancer patients, through the systematic and equitable implementation of evidence-based strategies for prevention, early detection, diagnosis, treatment and palliation, making the best use of available resources.” That’s a hefty definition, but essentially NCCPs lower the number of new cancer cases a country sees each year and improve the quality of care cancer patients receive by following a comprehensive national plan.

 

National cancer control plans are so important for countries that need to address the growing global cancer burden. Establishing an effective NCCP integrates existing health systems in a country and coordinates efforts to address the complexities of cancer care and treatment. However, many LMICs do not have one of these plans and are even struggling to adopt one in the face of competing health priorities, inadequate resources, and lack of expertise.

 

Latin America is one example of a region that exhibits a great need for national cancer control plans, but countries throughout the region are struggling to design and implement them. One big hurdle they face? Lack of adequate cancer registries.

 

Cancer registries are a fundamental requirement for the successful implementation of NCCPs. Why? Because you need to know the problem before you can implement a plan to fix that problem. Cancer registries collect highly valuable epidemiologic data on the state of cancer in a country – which cancers are most common, which areas have the highest cancer burden, who is most affected by cancer, etc. The data collected in cancer registries is essential for health officials to know the who, what, when, where, and why of their national cancer control plans. Armed with the knowledge of the local needs and current deficiencies in cancer care, a country can develop an evidence-based and forward-looking NCCP.

 

Fortunately, the percentage of Latin American and Caribbean countries that reported having a population-based cancer registry increased from 21% to 67% between 2011 and 2014. However, there is still a long way to go, as the proportion of the population that is actually covered by these registries is still quite low compared to developed countries. As the quality and quantity of data collected in Latin America grows, health authorities can begin to establish specific public health strategies to address the growing burden of cancer throughout the region.

 

Peru is a great example of a country in Latin America that has created, adopted, and implemented a national cancer control plan, which they have named “Plan Esperanza.” Plan Esperanza was created by a multidisciplinary team, including policy makers, that brought together different constituents to put forth comprehensive cancer control policies. The plan now impressively includes ten neoplastic diseases. Since the adoption of their NCCP, the following amazing things have happened in Peru:

  • The proportion of patients included in the universal healthcare system increased from 17% to 64%
  • The proportion of patients who paid out-of-pocket expenses for cancer treatment decreased from 59% to 7%
  • 16 million people have received preventive interventions, such as educational sessions and counselling
  • 2.5 million people have been screened for cervical, breast, gastric, colon, or prostate cancer – or a combination of these diseases

 

National cancer control plans like Peru’s are so important that coordinated international efforts – spearheaded by big organizations like the WHO – have been cropping up over the past few years. For example, the WHO endorsed the Global Action Plan for the Prevention and Control of Non-Communicable Diseases 2013-2020, which aims to achieve a 25% reduction in premature mortality from NCDs by 2025. WHO and PAHO (the Pan American Health Organization) launched the Women’s Cancer Initiative to bring together partners to set up action plans for the prevention and control of cervical and breast cancer in Latin America. Finally, the International Cancer Control Planning Partnership (ICCPP) was launched due to the combined forces of the Center for Global Health and the National Institutes of Health in the United States, the Latin America and Caribbean Society of Medical Oncology, PAHO, and the Union for International Cancer Control. The goal of the ICCPP is to implement and assess national cancer control plans with a worldwide framework and international support.

 

Undoubtedly, there is an urgent need to plan, develop, and better implement national cancer strategies, as low- and middle-income countries continue to bear more and more of the global cancer burden. What other countries or international organizations have been particularly successful at designing and implementing NCCPs? What more is needed from the international community to make these important goals a reality? Join the conversation and comment below!

 


Information in this post is summarized from our Lancet Oncology Commissions on Planning Cancer Control in Latin America and the Caribbean and Progress and remaining challenges for cancer control in Latin America and the Caribbean.

Connecting Cancer Control and Culture

Sarah is an intern at GCI and a junior at Tufts University studying International Relations and Community Health. At GCI, Sarah helps manage Global Tumor Board videos and finds fascinating and informative material to share on GCI’s social media platforms (be sure to follow us on Twitter, Facebook, and LinkedIn!)


 

If you were looking for a make-it-yourself cure for a headache, then my neighbor’s mom was sure to have the answer. She often used certain fruits, powders, or herbs from her home country, Pakistan, for fatigue and a variety of other common ailments. Growing up in a small, diverse suburb in Maryland, I encountered an array of traditional medicines, including some from my own household, and I still enjoy learning about them. Naturally then, I was pleased to read Oswaldo Salaverry’s article, “Back to the roots: traditional medicine for cancer control in Latin America and the Caribbean.”

The article, which precedes GCI’s Lancet Oncology commission, “Planning Cancer Control in Latin America and the Caribbean,” calls on medical and public health professionals to recognize and incorporate traditional medicine into Latin American cancer control. This might be done, for example, by engaging traditional healers in cancer prevention or diagnosis.

Traditional medicines are more popular than you may think. Salaverry notes that about 65% of the globe uses traditional medicine in some capacity according to WHO. When traditional medicine is so ubiquitous, ignoring it risks alienating many people. It’s time to bridge the gaps between “modern” cancer care and traditional medicine through culturally tailored health interventions and plans.

Leave a comment below on a health-related cultural practice you’ve grown up with or encountered over the years!

How a Breast Cancer Database Helps Young Women Around the World

“I was 36 years old when I first felt the lump in my breast,” Diana remembers. “I had been married for three years, and we had been trying to have a baby for two of those years.”

 

Breast cancer in very young women is considered a rare disease. When you look at the global population of breast cancer patients, those who are under 40 years of age represent a pretty small proportion. But when you zoom in on specific regions of the world, the picture changes a bit: breast cancer in young women is much more common in low- and middle-income countries (LMICs), compared to developed countries.

 

“We tried unsuccessfully to have a baby for two years, so we were about to visit a fertility specialist when I felt the lump.” Diana was eventually diagnosed with Stage III breast cancer and her doctor recommended chemotherapy and radiation therapy. “I was devastated because I thought that the chemotherapy would prevent me from ever becoming pregnant.”

 

Reproductive and sexual health are just some of the many facets of a young woman’s life that are affected by a diagnosis of breast cancer. She may have young children to care for, parents to support, and a full-time job to pay the bills. Although a breast cancer diagnosis is devastating for any individual, the costs to family and society are greater when such a young patient is affected.

 

However, despite the higher burden of this disease in LMICs, the needs and concerns of these young women – and even the unique characteristics of their disease – are not well known or addressed.

 

That’s why Dr. Cynthia Villarreal decided to start a Young Women’s Breast Cancer Database to collect important information – everything from quality of life and psychosocial factors to fertility and clinical characteristics – from this unique and understudied patient population. This way, we can begin to understand how to better help and empower young women with breast cancer throughout their treatment, recovery, and life afterwards.

 

The database is comprised of several different questionnaires that young women can fill out on tablets while they’re in the waiting room before an appointment. Cynthia implemented these questionnaires as part of a program she initiated at her hospital, which connects these young women to the resources they need to understand fertility-preserving options, learn about important genetic testing, and access community services and support groups.

 

“I thought that after chemotherapy, I could never become pregnant in my life, and I was devastated,” Diana explains. “However, when I visited my oncologist, she explained that there were several options we could try to become pregnant in the future. She referred me to a fertility specialist.”

 

Cynthia’s project is starting in Mexico, but she is working with us here at GCI to make the breast cancer database go global. With more women participating in this effort, we can collect more data and understand even more about how breast cancer affects young women around the world. Are there aspects of the disease that are common to all young women? Are there regional or ethnic trends in how the disease presents itself? What risk factors predispose certain young women to breast cancer? What are the most important resources to provide to young women with breast cancer?

 

All of these questions and more will help to clarify this complex and devastating disease, and will allow oncologists like Cynthia to better serve and support their patients. By expanding the global reach of the Young Women’s Breast Cancer Database, we are expanding the amount of knowledge we have at our fingertips and our ability to understand the plight of young women with breast cancer about the world. This way,  GCI can help patients like Diana access important resources that will improve not only their breast cancer outcomes, but their quality of life.

 

“I am so grateful that my oncologist and her team were concerned about my fertility, understood my concerns, and were able to refer me and my husband to someone who could help. Thanks to this, I am optimistically fighting my cancer and excited about my future possibilities of pregnancy!”

 

Accessible Technology Platform Connects Global Doctors

The Global Cancer Institute (GCI), a 501(c)(3) public charity, has a mission to improve the survival and quality of life of underserved cancer patients worldwide. It’s an ambitious goal, but GCI is accomplishing this by connecting a network of global oncologists through an integrated and easily accessible technology platform: Google.

 

GCI unifies its global projects on the Google platform, utilizing the resources offered by Google for Non-Profits. Google allows GCI to connect substituents via Google Apps. Google Apps is HIPAA-compliant, which is an important capability since GCI works with health data and adheres strictly to HIPAA standards. Google’s HIPAA compliance ensures that GCI’s data remains protected, even within this cloud-based technology platform.

 

Some of the key Google Apps products that assist GCI in meeting its goals are as follows:

 

Google Drive allows GCI to give access to shared documents to their global network of doctors through a single platform, which is particularly  important considering GCI’s network of over 350 doctors in more than 20 countries around the world. Google Drive allows GCI to control multiple folders and documents and thereby effectively manage and control all of its global projects with many constituents.

 

Google Hangouts is a videoconferencing tool that allows GCI to connect an unlimited number of viewers to participate in our Global Tumor Boards – live, doctor-to-doctor meetings that allow discussion and collaboration on complex patient scenarios from around the world. It is an extremely valuable educational tool and offers the opportunity for doctors to collaborate and learn from each other – even from different continents.

 

Google Forms provides a simple way to create patient questionnaires, activity tracking logs, and clinical surveys, which help collect important data for many of GCI’s projects.

 

Google Sheets acts as a back-end for the data collection that happens through Forms, functioning as an easily shareable spreadsheet that updates in real-time as data is gathered from around the world.

 

Google Extensions, like AppSheet, expand the capabilities of the Google Apps. AppSheet is a tool that converts the Forms that GCI creates into applications for an iPhone or tablet. This allows patient questionnaires and activity tracking logs to be housed on a tablet’s home screen, easily accessible and user-friendly for both patients and health workers. It also allows use in areas that do not have wi-fi, an important capability in low resource areas. The data is then uploaded to Sheets when a wi-fi connection is established.

 

Google Analytics allows GCI to track activity on their website in order to gauge their audiences, expand their reach, and engage with followers and potential donors.