Ebook: Advancing Cancer Education and Healthy Living in Our Communities

This book contains selected papers from the St. Jude Cure4Kids Global Summit held June 9–11, 2011, at St. Jude Children's Research Hospital. The aim of this three-day conference was to improve health and science education in classrooms and communities around the world. It brought together leading educators, innovators, and pioneers in a multidisciplinary forum to promote improvements and innovations in health and science education. This event connected people from diverse communities and professional backgrounds and provided unique opportunities for networking and building collaborations. Specifically, the objectives of the conference were:

To identify successful examples of effective public health education programs, their implementation models, and evaluation metrics;

To analyze the challenges in designing effective, scalable, and cost-effective public health education programs; and

To identify strategies, methodologies, and incentives for developing future public health programs that yield large-scale improvements in health outcomes in our communities.

Health and education are inextricably linked. The need for effective and scalable cancer, health, and science education programs is increasing as a result of the rising levels of chronic disease around the world [1]. Current approaches are not yielding scalable, sustainable solutions. Because the problem is complex, we need new approaches that combine multiple disciplines such as education, medicine, the sciences, and public health to create innovative solutions. We need to develop opportunities and strategies to involve and engage teachers, children, and families in new health promotion programs that would instill healthy lifestyle choices at an early age with the goal of preventing chronic conditions that can be costly and difficult to treat [2].

Over half of the deaths in the world are now due to just four chronic conditions – diabetes, lung diseases, some cancers, and heart disease [2]. These chronic diseases are highly influenced by some common risk factors such as smoking, poor diet, and lack of physical activity [3]. The World Cancer Research Fund (WCRF) global network suggests that, across a range of countries, making lifestyle changes such as maintaining a healthy weight, eating a healthy diet, and taking regular physical activity can reduce the risk of common cancers by up to a third [4]. These findings are further supported by the World Health Organization's new Global Recommendations on Physical Activity for Health [5]. Cancer is a leading cause of death around the world, and its incidence continues to rise. Each year 12.7 million people discover they have cancer and 7.6 million people die from the disease. Evidence shows that 30–40% all cancer deaths can be prevented, and one third can be cured through early diagnosis and treatment [6].

Developing and delivering effective, scalable, and sustainable programs that lead to real behavioral change will be challenging and will require innovation and interdisciplinary collaboration. The selected papers in these proceedings are intended to provide a foundation in the key topics that will be needed to create future innovative health promotion programs. The conference program for the St. Jude Cure4Kids Global Summit was organized by Yuri Quintana and Aubrey Villalobos with input from an Advancing Cancer Education and Healthy Living in Our Communities international program committee. The proceedings book was edited by Yuri Quintana, Aubrey Villalobos, and Dorothy May. The conference was supported and hosted by the Cure4Kids team from the International Outreach Program at St. Jude Children's Research Hospital. We hope this book will inspire other educators, health advocates, and innovators in the development of new programs that have global impact.

Yuri Quintana, PhD

Director for Education and Informatics

International Outreach Program

St. Jude Children's Research Hospital

Aubrey Van Kirk Villalobos M.Ed.

Cancer Educational Outreach Coordinator

International Outreach Program

St. Jude Children's Research Hospital

Dorothy May, MS

Editorial Coordinator

International Outreach Program

St. Jude Children's Research Hospital

St. Jude Cure4Kids Team (www.cure4kids.org)

International Outreach Program (www.stjude.org/international)

St. Jude Children's Research Hospital (www.stjude.org)

References

[1] Daar AS, Singer PA, Persad DL, Pramming SK, Matthews DR, Beaglehole R, et al. Grand challenges in chronic non-communicable diseases. Nature 2007;450:494–6.

[2] Suhrcke M, Nugent RA, Stuckler D, Rocco L. Chronic Disease: An Economic Perspective. London: Oxford Health Alliance; 2006.

[3] The World Health Organization. Preventing chronic diseases: A vital investment: WHO global report. Geneva: World Health Organization; 2005.

[4] WCRF/AICR preventability estimates: Update to estimates produced for the 2009 Policy Report. World Cancer Research Fund; 2011.

[5] WHO Recommendations on Physical Activity for Health. Available at: http://www.who.int/dietphysicalactivity/factsheet_recommendations/en/. Last accessed: June 9, 2011.

[6] WHO. The World Health Organization's Fight Against Cancer. 2007. Available at: http://www.who.int/cancer/publicat/WHOCancerBrochure2007.FINALweb.pdf. Last accessed: June 9, 2011.

Non-communicable diseases, such as cancer, diabetes, and chronic cardiovascular and respiratory diseases, remain a major cause of mortality and morbidity worldwide resulting in more than 36 million deaths annually. Of primary importance in the reduction of this pain and suffering is the local use of education to eliminate misconception, enable prevention, reduce the associated social stigmas, and prepare a workforce that can care for its own people as well as feed an economic engine helping to combat the poverty that so often determines the availability and quality of care. The need to develop these local capabilities is especially acute for children, as 80% of pediatric cancer cases occur in low- and middle-income countries, places where the survival rates are lowest.

The mission of the St. Jude International Outreach Program (IOP) is to improve the survival rate of children with cancer and other catastrophic diseases worldwide, through the sharing of knowledge, technology, and organizational skills. There are an estimated 160,000 newly diagnosed cases of childhood cancer worldwide each year, and cancer is emerging as a major cause of childhood death in the developing regions of Asia, South and Central America, northwest Africa, and the Middle East. Over the past 30 years improved therapy has dramatically increased survival rates for children with cancer, but still more than 70% of the world's children with cancer lack access to modern treatment. Although sick children from around the world have traveled to our hospital in Memphis, Tennessee, since its inception, treating children in their own countries is more efficient and less disruptive for them and their families. In the context of St. Jude's culture of sharing knowledge about the management of children with cancer, we now use modern technology to reach far more children than would ever be able to come to St. Jude Children's Research Hospital. St. Jude strives to address the needs of those children in countries that lack sufficient resources and to help them manage their own burden of cases effectively. By sharing knowledge and technology with the local governments, health care providers, and the private sector in these countries, St. Jude is improving diagnoses and treatments to increase the survival rates of children all across the globe. In addition to training medical teams locally, St. Jude Children's Research Hospital hosts many visiting fellows at our campus in Memphis. St. Jude helps partner medical institutions develop tailored evidence-based protocols for treating children with cancer and other catastrophic diseases. St. Jude physicians serve as mentors to physicians at our partner sites and consult on difficult cases. Nurses are trained on best practices in clinical care and pathologists on techniques for accurate diagnosis. We also partner with local fundraising foundations that support the medical programs. This model has proved to be highly effective in providing poor children in developing countries access to modern treatment and care. True to the commitment of St. Jude to sharing information with the worldwide medical community, in 2002 St. Jude launched Cure4Kids, a comprehensive online resource dedicated to supporting the care of children with cancer and other catastrophic diseases. Today Cure4Kids (www.Cure4Kids.org) has over 27,000 registered users in more than 175 countries. In 2006 St. Jude launched the Cancer Education for Children Program (Cure4Kids for Kids) that helps school children, their parents, and teachers understand the basic science and treatment of cancer. The IOP is ambitious, widely inclusive, and relentless in its pursuit of the dream of St. Jude's founder Danny Thomas that “no child should die in the dawn of life.” No child, anywhere in the world.

In October 2010 The Max Foundation, in partnership with 30 cancer patient associations in emerging countries, organized a global cancer awareness campaign.

The aims of the campaign were: (i) to increase awareness of the needs of people living with cancer in developing countries; (ii) to increase local visibility of patient associations in their countries; (iii) to collect more than 10,000 signatures to the World Cancer Declaration (WCD); and (iv) to improve the lives of cancer survivors by providing them with an opportunity to express their feelings about the disease.

The campaign was developed as a global effort, to be implemented by local patient associations through their volunteer survivors and caregivers. The methodology at the global level included developing the framework, branding, and communication tools, while making available limited funding and heavy logistical support. Local patient associations were encouraged to adapt the initiative to a culturally accepted format. Key elements of the campaign were the mix of low tech and high tech elements to allow low tech populations to participate while promoting the initiative using social media and high tech tools. Additionally, the participation of survivors and caregivers ensured the campaign provided immediate benefit to cancer patients. Finally, the addition of the World Cancer Declaration provided a strong unifying component.

More than 60 events were held in 31 countries around the world, collecting more than 13,000 signatures to the World Cancer Declaration and a similar number of support messages to cancer survivors representing 84 countries. Local events gained local media visibility in many countries, and the campaign was promoted in multiple international forums and Web sites.

This initiative involving mobilization of volunteers and the development of a global initiative as a grassroots movement taught important lessons on media outreach and selection of leaders for a cancer awareness campaign.

Effective vaccination is now available to prevent human papillomavirus (HPV), the most common sexually transmitted infection and the cause of cervical cancer, the second most common cancer among women worldwide. HPV vaccine uptake is particularly important for females surviving cancer, who are at high risk for HPV-related complication due to the direct and indirect effects of cancer therapy. Thus, Version 3.0 of the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancer recommends HPV vaccination for all eligible females surviving childhood cancer. Because this vaccine was only FDA approved in 2006, little is known about the complexity of vaccination uptake among those surviving childhood cancer. This chapter describes HPV vaccination and its usefulness in survivors of childhood cancer, provides a rationale for describing survivors as being at increased risk for HPV-related complication, identifies factors that are predictive of HPV vaccination, and discusses the utilization of these predictors in designing strategies to promote adherence to the HPV vaccination recommendations among survivors.

The creation of a new public e-health product is no guarantee that it will be used. Developing an implementation strategy is crucial for success. This paper presents a model for both an implementation and an evaluation process. It offers strategies for the multiple phases of an implementation process (foundational concepts, actual implementation, and the on-going use process). It also offers evaluation considerations that parallel each of the implementation phases.

Social media and the multimedia networks that they support provide a platform for engaging youth and young adults across diverse contexts in a manner that supports different forms of creative expression. Drawing on more than 15 years of experience using eHealth promotion strategies to youth engagement, the Youth Voices Research Group (YVRG) and its partners have created novel opportunities for young people to explore health topics ranging from tobacco use, food security, mental health, to navigation of health services. Through applying systems and design thinking, the YVRG approach to engaging youth will be presented using examples from its research and practice that combine social organizing with arts-informed methods for creative expression using information technology. This presentation focuses on the way in which the YVRG has introduced interactive blogging, photographic elicitation, and video documentaries, alongside real-world social action projects, to promote youth health and to assist in research and evaluation. Opportunities and barriers including literacy and access to technology are discussed and presented along with emerging areas of research including more effective use of smartphones and social networking platforms such as Twitter, Facebook, and YouTube in health promotion and public health.

Memorable experiences deliver intense usable moments with the support of different platforms and social networks. Higher degrees of motivation ensure efficiency and performance. Serious games deliver powerful and truthful experiences by providing the user with goals, challenges, problem-solving, and rules, besides a clear internal value and an interactive experience. Our software and hardware-based tools should have the power to teach and change us, while making us better problem-solvers and professionals.

Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in Canada. The Internet and mobile phones have revolutionized the ways in which those affected by chronic illnesses obtain health information. Increasingly individuals affected by chronic illnesses are using social media (e.g., blogs, YouTube®, Facebook®, Twitter®) to obtain information about and social support for their conditions. This rate is expected to grow with the increased use of the Internet, mobile phones, and mobile phone/social media software applications. The future of COPD self-management is changing and will likely include the use of a blend of these three technologies. A literature review was undertaken to determine the current state of the research at the intersection of COPD and the use of mobile devices and mobile social media applications in health care.

Innovative, humanitarian individuals and organizations are seeking to leverage the power of information technologies by constructing IT-enabled social action networks (ITSANs), networks of actors, connected via an IT platform, working together to improve social conditions and the lives of others. ITSANs are primarily web-based platforms that allow users to collaborate, share information, and pool resources to enhance efforts to address a common social mission. The goal of this research is to investigate how ITSANs are used to positively affect social needs by examining how these platforms are constructed and sustained. Also of interest are factors influencing user participation. To develop an in-depth understanding of ITSANs, this research proposes a qualitative multi-case study approach that seeks to understand ITSANs through the lived experiences of key actors.

The paper describes the authors' work in the area of health informatics (HI) education involving emerging health information technologies. A range of information technologies promise to modernize health care. Foremost among these are electronic health records (EHRs), which are expected to significantly improve and streamline health care practice. Major national and international efforts are currently underway to increase EHR adoption. However, there have been numerous issues affecting the widespread use of such information technology, ranging from a complex array of technical problems to social issues. This paper describes work in the integration of information technologies directly into the education and training of HI students at both the undergraduate and graduate level. This has included work in (a) the development of Web-based computer tools and platforms to allow students to have hands-on access to the latest technologies and (b) development of interdisciplinary educational models that can be used to guide integrating information technologies into HI education. The paper describes approaches that allow for remote hands-on access by HI students to a range of EHRs and related technology. To date, this work has been applied in HI education in a variety of ways. Several approaches for integration of this essential technology into HI education and training are discussed, along with future directions for the integration of EHR technology into improving and informing the education of future health and HI professionals.

Cancer is a leading cause of death globally. It is estimated that 80% of cancer deaths now occur in resource-poor, low-income countries. Education is at the center of distributing cutting-edge cancer treatment and prevention techniques to healthcare providers in resource-poor communities. For over a decade, web-based education systems have been developed to facilitate access to educational materials for healthcare providers worldwide. Over the past two decades, commercial organizations, such as Amazon and Dell, have developed sophisticated content personalization techniques for web-based systems that automatically construct both the content and user interface to meet the needs of each individual user. This paper explores the personalization techniques developed by commercial organizations and applies them to the development of propositions for the creation of personalized content on web-based education systems aimed at healthcare providers in low-income countries.

In 2006, St. Jude Children's Research Hospital created Cure4Kids for Kids, a school-based outreach program. The objectives of this community education program are to teach about cancer and healthy lifestyles and to inspire an interest in science and health-related careers. A multidisciplinary team of St. Jude and outside experts developed and pilot tested age-appropriate educational materials and activities with 4^th grade students. Eight schools and more than 800 children have participated in the program since 2006. Teachers and students have demonstrated a very positive response to the program for it being both fun and educational. Cure4Kids for Kids resources have been collected into a teacher's kit and are now freely available online at www.cure4kids.org/kids.

Since 2006 St. Jude Children's Research Hospital has been developing Cure4Kids for Kids, a school-based outreach program to educate children about cancer and healthy lifestyles with a focus on cancer prevention. An evaluation of student knowledge acquisition and retention for the program at the Grade-4 level was conducted during the 2010-2011 school year. Preliminary results of this evaluation are outlined with some of the challenges for long-term program evaluation of cancer prevention programs.

Students diagnosed with cancer who return to school as quickly as possible are less likely to fall as far behind academically and are more likely to be reintegrated readily into the school social environment. For students to return to school successfully, a team of support may be required and should include school professionals. Traditionally, school professionals have received very little training on how to help students with cancer return to the school environment and working with such students can be an intense emotional experience. The present study explored the cognition, motivation, and emotion of school professionals working with students with cancer during the school re-entry process. Case studies were conducted to explore the participants' emotional experience as it related to helping students to return and reintegrate into the classroom environment.

Health education, especially in the earlier stages of life, is essential for the development of healthy habits for life. Though healthy living messages must first be delivered locally, our goal is to distribute these messages globally using new technology and communications mediums. The La Salle schools, with a global network of primary, secondary, and higher education institutions have the capacity to reach thousands of children. La Salle Campus Barcelona, in collaboration with St. Jude Children's Research Hospital and Hospital Sant Joan de Déu , has started to carry out educational activities in schools in Catalonia, as well as supporting the design of video games teaching healthy habits and preparing videos about a healthy lifestyle, with the goal of reaching children around the world.

Health education is essential not only for preventing illnesses but also for knowing how to act when disease comes. In countries where the education system is inefficient for most of the population and where health issues are often ignored or mistreated because of ignorance or well-intended but ineffective belief in nature's energy and magic, it is important that people have access to truthful information about health issues. Such access allows them to act adequate knowledge and also to learn ways to avoid illness by changing their daily habits into a “healthy way of living.” Approaching the young population is a way to achieve this objective. The program described here considers the education of both majority (indigenous) and minority (non indigenous) populations. It approaches the communication of information in such a way that it involves the participants in the “making” of the education. The participants actively interact with didactic material that allows them to experience “hands on” the issues about cancer and healthy living. It is intended to have a profound impact on the participant, so that he/she will remember the “education” not only as information but also as an experience. The program includes specific material for the indigenous population, which is based on their idiosyncrasy (corn plants) so that they can more easily understand the concepts. In Guatemala, UNOP (Unidad Nacional de Oncologia Pediatrica) is the only institution that provides a quality integral service for the majority of the entire children-with-cancer population. UNOP and the Psychology Department are interested in the development and implementation of education programs such as this where the participant not only learns but also experiences information about this disease and its prevention.

The “A-B-C-1-2-3 Healthy Kids in Tennessee – Let's Eat Well, Play, and Be Aware Every Day” project is a hands-on educational program emphasizing healthy living that targets childcare providers, the children they care for, and their families. The program was initially implemented as a pilot project in 6 middle Tennessee childcare centers. Materials were organized and developed by the Middle Tennessee Cancer Coalition's childhood action team in conjunction with staff from Middle Tennessee State University (MTSU) Center for Health and Human Services and the MTSU Center for Physical Activity and Health in Youth. The A-B-C-1-2-3 initiative served as a feasibility project to inform the conduct of field operations. Through the MTSU Center for Physical Activity and Health in Youth, an expanded 12-week pilot program took place during 2010 in 2 childcare centers. The purpose of the program is to educate childcare providers who, in turn, educate children and their parents and promote healthy lifestyles and decrease the risk of developing cancer, obesity, and other lifestyle-associated diseases and health conditions. The overall goal of the project is to decrease lifestyle and environmental cancer risk factors among Tennesseans by 2012 as detailed in the 2009-2012 Tennessee Comprehensive Cancer Control Plan and to provide educational opportunities in healthy eating and healthy weight to childcare providers detailed in the 2010-2015 Tennessee Statewide Nutrition and Physical Activity Plan using a “train the trainer approach” along with classroom and family education. In 2012, the project will partner with a statewide Tennessee Department of Health initiative, Gold Sneakers, which provides a policy piece to the A-B-C-1-2-3 Healthy Kids in Tennessee's approach to disseminate nutritional and physical activity education to childcare providers, children, and their families, offering a full-circle approach to health promotion in a childcare setting.

Cancer in the United Kingdom is viewed as a taboo subject, particularly with young people, who can enter adulthood with little knowledge about cancer and are often misinformed about the facts. Evidence suggests this lack of information can lead to significant delays in cancer diagnosis. Within the education system in the United Kingdom, there is no provision for cancer education, but as cancer is likely to affect more people each year, the Teenage Cancer Trust education program ‘Let's talk about it’ aims to improve knowledge and awareness of cancer in secondary schools and offers advice on healthy living to all young people.

Elementary schools in Jordan have included health education material in curricula to promote healthy lifestyles among younger school children. However, the relation between healthy lifestyles and the prevention of chronic diseases such as cancer has not been an explicit component in school curricula of younger age groups. We sought to explore the level of knowledge among 6th grade students as well as their attitudes with respect to cancer. This comes as part of a pilot project to develop an educational series on cancer prevention that aims to meet knowledge gaps specific to the community of students in this age group in Jordan.

Methods: A questionnaire composed of items measuring knowledge about cancer and cancer prevention through healthy practices, attitudes towards cancer, and intentions to engage in healthy behaviors was developed. Questionnaires previously used in similar age groups elsewhere were used as a reference. Our questionnaire was reviewed and approved by the Ministry of Education - School Health & Nutrition Department. Sixth graders in a convenience sample of four schools selected by the Ministry of Education completed the self-administered questionnaire.

Results: Ninety-six 6th graders from four schools answered the baseline survey, but 28% of the surveys were excluded from the analysis (data quality problems) leaving 69 student participants. In the original sample of 96 students, 48 (69.6%) were girls. Among the 69 student participants, 67 (97.1%) had heard of cancer, but fewer than 44 (63.8% knew it was not a contagious disease. Regarding fear, 29 (42%) would not play with a cancer patient. Concerning prevention of the most prevalent cancers in Jordan as research has shown that certain risk factors increase the chance that a person will develop cancer. The most common risk factors are smoking, Poor diet, lack of physical activity, or being overweight, 25 (36.2%) knew breast cancer was preventable, and 28 (40.6%) and 24 (34.8%) knew this regarding lung and colorectal cancers, respectively. About 40 (57.8%) students identified healthy dietary behaviors (e.g., low fat, low sugar), but only six could identify the ideal frequency for exercise (60 minutes daily). Fifty-eight (84.1%) agreed that cigarettes harmed the health. However, only 21 (30.4%) found it easy to avoid exposure to secondhand smoke. Nine (13%) reported smoking water pipes, but only one reported smoking cigarettes. Forty-eight (69.6%) and 47 (68.1%) agreed that daily physical activity and healthy eating were important, respectively. Fifty-two (75.4%) students found it easy to eat healthy at home, but only 37 (53.6%) found it easy to do so at school. Finally, 63 (91.3%) students wanted to learn more about cancer.

Conclusion: Although a significant number of our sample of students has heard about cancer and students exhibit some knowledge regarding healthy practices, our results show that knowledge gaps exist with regard to the nature of cancer as a noncontagious disease, the preventability of specific cancers, and the link between specific risk factors and cancer.