What exactly do we do and how exactly do we do it?
Dr. Eduardo Paulino from Rio de Janeiro, Brazil, served as a 2016 GCI Global Fellow from June to December. Throughout his Fellowship, Eduardo participated in all of the projects we do here at GCI, from leading research publications on cancer control in Brazil to helping design projects that will help patients in his home country and beyond. Eduardo has been a fantastic and energetic addition to our GCI team, and in the last few days of his Fellowship, I was able to speak with him about the projects he has been working on with GCI, his time in Boston, and his goals upon returning to Brazil.
1. Could you tell us a little bit about your background, your work as an oncologist, and what you do in Rio?
I’m a medical oncologist, dedicated specifically to treating gynecologic tumors. I work in the department of Gynecology Oncology at the National Cancer Institute (Hospital do Cancer II) in Rio de Janeiro, Brazil, which is a public cancer institute. Most of my patients are under-resourced and have some serious obstacles when they try to access high-quality cancer care. In my hospital, we are able to provide public care for all women with the best evidence-based practices, which is a very rewarding environment to work in.
2. Do you like Boston? How has your experience been in our city?
Boston is an amazing city, and it has been a great host. I have had no problems at all (if you don’t count apartment hunting…) Wherever you are, you always have access to markets, drugstores, gyms, grocery stores, etc. The city is also very welcoming to foreign students and tourists, with so many schools, hospitals, and things to do. All of the Bostonians that I have met are very friendly and helpful.
3. What has been your favorite experience in your fellowship so far?
My favorite experience in my fellowship has been the opportunity to share my ideas and have them taken into account. The interaction with my mentors was very fruitful, and I believe that both sides benefited from collaborating together. It is great to work with so many different people and to meaningful contribute to projects that will change the landscape of cancer care for patients in my country.
4. What kinds of projects are you working on here with Dr. Goss and GCI? What projects or ideas are you most excited about sharing with your colleagues and starting at your hospital when you get back to Rio de Janeiro?
My projects with Dr. Goss and GCI are based on the barriers that patients in low- and middle-income countries (LMICs) face when trying to access quality cancer care. We believe that the first step is to find these obstacles and create plans to overcome them, in order to better serve cancer patients in under-resourced countries. GCI’s patient navigation programs and prospective databases are the most exciting projects that I would like to implement in my hospital. GCI already has a global database for young women with breast cancer, but since I specialize in gynecologic oncology, I helped to design a cervical cancer database, so we can begin to learn more about the treatment choices and outcomes for women in Brazil and elsewhere who are suffering from this disease. It will be very exciting to implement this database with my own patients and contribute to a global body of data that will help us help women around the world.
5. What do you think will be your biggest take-away or lesson-learned from your time here at GCI?
Multidisciplinary work! Here, I really got to experience how important it is to engage in multidisciplinary teamwork–taking into account everyone’s opinions, respecting everyone’s experience, and maximizing our impact with the best approach. This pattern of working with multidisciplinary teams is one of GCI’s key goals, and it is used in patient care, as well as any kind of research project the group performs. By engaging the right people and various experts in the field, we are able to make the best decisions possible for our patients.
6. What advice would you give to young oncologists, doctors, or students who are thinking about getting into public health or cancer research?
That is possible to make a difference! Public health, especially in LMICs, is challenging. When you hit your first obstacle, don’t give up because there will be many more ahead. With continuous effort, you do have the ability and power to change patient care (whether that is by treating individual patients, improving screening practices, connecting a patient to other services, providing palliative care, or even finding a cure). Believe in yourself!
Our Patient Navigation Program in Mexico was only launched a few months ago, but we are already seeing what an amazing service it provides for so many patients. Here, Dr. Enrique Soto tells the story of Juana in Mexico City. With the help of patient navigation, Juana has successfully navigated Mexico City’s health system and is now excited about the prospect of helping other patients like her complete chemotherapy!
“Juana is one of the many success stories of our Patient Navigation Program,” says Dr. Enrique Soto, co-investigator for the Patient Navigation Program in Mexico City. “Juana is a delightful 77-year-old woman who lives in a village in the borough of Xochimilco, in the southern part of Mexico City. She was diagnosed with breast cancer in her community and sent to Ajusco Medio General Hospital. After Juana arrived to Ajusco Medio, she underwent a mastectomy with axillary lymph node dissection.”
Ajusco Medio is the community hospital where Wendy, Mexico’s first navigator, works to navigate cancer patients to the proper cancer centers throughout the city for follow-up treatment and care. She not only helps schedule follow-up appointments and provides information on health insurance, but she also offers support and friendly face for patients who are trying to receive care within a complex and confusing health system.
“In one of her follow-up visits, Juana was approached by Wendy, our patient navigator, who offered to help her receive adjuvant treatment with chemotherapy and radiotherapy. Juana started patient navigation and was navigated to the National Institute of Medical Science and Nutrition. There, she was seen by an oncologist within the first two weeks and enrolled in the Seguro Popular public health insurance system,” Dr. Soto explains.
To be seen by an oncologist at a tertiary cancer center within two weeks of referral is an impressive feat in Mexico City, where the median time to arrive to a tertiary care center after being referred is two full months. With Wendy’s help, Juana was able to make this journey in a fraction of the time.
“Her biopsies were reviewed and after a complete evaluation by oncologists, surgeons, radiation oncologists, and geriatricians, she was deemed fit for treatment. So far, Juana has had three chemotherapy sessions without any complications, and is getting ready for her radiotherapy,” Dr. Soto says. “She has even participated in another one of our trials exploring the use of smartphones for the follow-up of older adults undergoing chemotherapy, and she enjoys the prospect of helping other patients through her participation in research.”
Dr. Soto explains that Juana is a wonderful and energetic patient who is the perfect example of how navigation can help cancer patients move through a complex system to receive timely cancer care – with amazing results! Not only has Juana successfully started her cancer treatment, but she is now enrolled in public health insurance and is an active participant in other studies that aim to help patients just like her complete chemotherapy.
“Juana is very grateful for the help Wendy gave her and is happy with the whole navigation team,” says Dr. Soto. “But we are even more grateful for her amazing participation!”
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.
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.
Through GCI’s Fellowships and Scholarships, young oncologists from low- and middle-income countries have the opportunity to come to Boston and gain exposure to clinical practices, education, and research in the U.S. They participate in all of the projects we do here at GCI, from leading research publications on cancer control in their home countries to designing access-to-care initiatives to help their patients back home. Dr. Rossana Ruiz is an oncologist at the Instituto Nacional de Enfermedades Neoplásicas, in Lima, Peru, and has been our Fellow since October 2015. Rossana has been such a wonderful and energetic addition to our team here in Boston, and in the last week of her Fellowship, I was able to chat with her about her time in Boston, the projects she has been working on, and the lessons she will carry back with her when she returns to Peru.
Alexandra: Could you tell us a little bit about your background and what you do?
Rossana: I am a Peruvian oncologist, and I completed my medical training at the Peruvian National Cancer Institute, INEN. After I finished my residency in Clinical Oncology in 2014, I worked as a medical oncology attending for adolescents and young adults with hematological malignancies for almost a year, which was the most fulfilling and gratifying experience I have had as a clinician. I am fascinated by the challenge of understanding and treating cancer in the young, and, since then, I have been working on projects and publications on this special population of patients. Then in October 2015, I started my fellowship at the Global Cancer Institute.
A: How do you like Boston?
R: I am in love with Boston and you know it! This is a great city to live in and enjoy; it is organized, safe, and beautiful. As it is a university city, its population is friendly, multicultural, and highly educated, which I think is an awesome combination. In its streets, authentic history mixes with a youth vibe to create a unique atmosphere. A wide variety of cultural and musical activities await around every corner, at every time, and are accessible for everyone. Plus, it is very easy to get around the city – you can just walk anywhere while admiring the views! Being able to go the Charles River Esplanade just for lunch or just walk through Boston’s amazing parks on a sunny – or snowy – day is something I am definitely going to miss. In fact, as Dr. Goss told me on the day I arrived, a piece of my heart will remain in Boston forever.
A: What has been your favorite experience so far in your Fellowship?
R: One of the experiences that I have enjoyed the most is being able to experience real teamwork and being treated as peer for every single project. It is amazing how when people work together, knowledge and unique perspectives blend, and creativity booms to reach a common goal. It has been an honor to work with a network of such intelligent and passionate, yet humble, people here in Boston and around the world! I have had the opportunity to meet so many of these people individually, and it gives me great satisfaction to consider them my colleagues and outstanding role models, but above all, great friends.
A: What kinds of projects are you working on here with Dr. Goss and GCI? What projects or ideas are you most excited about sharing with your colleagues and starting at your hospital when you get back to Lima?
R: I have worked with very talented colleagues under the mentorship of Dr. Goss on various projects, ranging from current clinical topics in oncology to purely public health issues. We designed and conducted a survey to assess the patterns of clinical practice of more than 3,000 breast cancer specialists across Latin America, with the objective of identifying adherence to clinical practice guidelines and its determinants. The results of this assessment will constitute the framework for implementing targeted educational interventions that will aid in improving clinical care. We have also analyzed the worrisome situation of access to high-cost cancer drugs across Latin America and proposed feasible ways to overcome its multiple challenges, all from a physician’s perspective. Currently, we are working on implementing a Patient Navigation Program, as well as a very promising protocol to identify factors that predispose a certain group of young women to a deadly form of breast cancer that is related to pregnancy. Once back in Lima, I am very excited to start working right away on a multicenter database for young breast cancer patients, a highly impactful but understudied disease, more frequently seen in my region of the world.
A: What do you think will be your biggest take-away or lesson learned from your time here at GCI?
R: Being in Boston has been a game-changing experience for me. Besides my personal growth, working with GCI has allowed me to take time to analyze the Latin American cancer situation from a wider, mentored perspective. Our problems transcend individual jurisdictional boundaries and are common to the region, and that is why collaboration is so relevant. I learned that along the continuum of cancer care – from prevention to primary treatment and supportive care – there are multiple deficiencies that, when added up, drive the huge difference in cancer mortality between our countries and the Western world. One of the most important take-home messages for me is that every gap or barrier represents an opportunity for improvement. Therefore, each barrier needs to be properly identified, researched, and documented in order to construct goal-driven and evidence-based interventions. In this way, we obtain effective and reproducible solutions that are amenable to be applied to bigger populations.
A: What advice would you give to young oncologists, doctors, or students who are thinking about getting into public health or cancer research?
R: Cancer incidence and mortality is expected to markedly increase in developing countries like mine in the following years. In our everyday practice, health inequities and the deficiencies and weaknesses of our healthcare system (evidenced by the high prevalence of advanced disease in developing countries) just jump out at us. In this setting, a public health perspective cannot be disconnected from the practice of oncology. Research is for sure the first step, and the opportunities are endless and frequently at the patient’s bedside. Doctors and researchers, especially through collaborative networks, are in a strategic position to draw authorities and public attention to our reality and our needs.