REPORTS & FINDINGS
At LIVESTRONG we refuse to accept that often, more than a decade passes between when research is conducted and its impact on patient care. We believe that the people affected by cancer who invest their time and energy in our research efforts deserve to directly benefit from what we learn, when we learn it.
By leveraging our committed constituency, our government and non-government partners in cancer advocacy, and the trusted name recognition we’ve built over the past fourteen years, LIVESTRONG efficiently and effectively executes research projects that are not always possible in other settings. Our research is informed by the most pressing questions in the evolving field of survivorship research, and by what we hear on a daily basis from the people affected by cancer. Our research program is unique in that we hear–and respond to–the voices of people affected by cancer, whether from constituents who follow us online, participate in events and initiatives such as Team LIVESTRONG and LIVESTRONG Day, or use our navigation services.
We also turn the data we gather into reports for the public and use these reports as tools to advocate for and provide a voice to the cancer survivors who share their stories with us. Many of our reports highlight important lessons we have learned through our work, while others focus attention on the global burden of cancer or provide unique insight into the cancer experience. In addition to directly informing the work we do each day, these reports are important tools for the cancer community to ensure that the needs of cancer survivors are heard and addressed.
We believe that by taking this approach we can transform research to be patient centered. Read, cite, share, etc.
Recognizing the growing number of cancer survivors in the United States, LIVESTRONG Foundation launched the LIVESTRONG Survey for Post-Treatment Cancer Survivors in 2006 and 2010. Cancer survivor respondents in those surveys experienced significant concerns after their treatment was complete. Unfortunately for many, their concerns were not addressed.
In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face and developed the survey in coordination with the National Cancer Institute, the Office of Behavioral and Social Sciences Research, the Centers for Disease Control and Prevention, American Cancer Society and the Agency for Healthcare Research and Quality. Our goal was to include elements of the Experiences with Cancer Survivorship supplement of the Medical Expenditures Panel Survey (MEPS).
In total, 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation.
Throughout 2013, the Foundation will release a series of briefs on the results of the 2012 survey.
LIVESTRONG conducted this market research study to inform its strategy for its Hispanic/Latino outreach campaign which sought to close the gap in health disparities for Hispanics diagnosed with cancer. As a result of the award-winning outreach campaign, the number of Hispanic/Latino survivors accessing LIVESTRONG’s free, confidential navigation services has increased by 40 percent.
LIVESTRONG convened the Essential Elements of Survivorship Care Meeting in Washington, DC on September 15th and 16th, 2011, with the goal of making progress in building consensus in the survivorship community around how to best address the needs of post-treatment survivors. Over 150 leaders, stakeholders, experts, cancer survivors and cancer survivor advocates achieved consensus on these 20 essential elements of survivorship care delivery. This brief provides both an overview and the outcome of the meeting, including the 20 essential elements of survivorship care.
In June 2010, LIVESTRONG launched a survey that in part assessed how cancer survivors engage with the cancer community. This brief explores the results of how cancer survivors and their family members, friends and loved ones on feel supporting the fight against cancer impacts them personally.
This brief includes case studies from Rwanda and Jordan describing how existing health systems designed to treat infectious diseases in low-income countries can be strengthened to address the urgent and growing cancer needs of developing populations. Recommendations included in the brief focus on interventions that will be the most effective and have the biggest impact on quality of life and survival.
In June 2010, LIVESTRONG launched a new and improved version of the 2006 survey which once again focused on the physical, emotional and practical needs of post-treatment survivors. This report describes the post-treatment needs of this new group of survivors and analyzes how their needs compare to the survivors surveyed in 2006, highlighting the gap between who reports post-treatment needs and who receives care for those needs as a critical breakdown in post-treatment survivorship.
In 2004, LIVESTRONG began providing national, one-on-one navigation services to anyone affected by cancer, regardless of cancer diagnosis, stage or demographic factors. This report reviews LIVESTRONG’s navigation services and highlights the impact this model had on cancer survivors in 2010.
The LIVESTRONG Survivorship Center of Excellence Network (Network) was established in 2005 to advance survivorship care and improve the health and quality of life of post-treatment cancer survivors. This report summarizes the contributions of the Network to date, offering insight from a qualitative deductive study conducted on the Network and suggesting next steps for accomplishing the Network’s goals.
Based on a survey of cancer survivors, this report details how survivors want to use, access and interact with their health information as well as how survivors feel medical care will change with the adoption of electronic health information exchange.
This report is the result of a global research study executed by LIVESTRONG in 2007 and focuses on the challenges and opportunities presented by the stigma of cancer around the world. LIVESTRONG plans to use the results of this research to strengthen patient advocacy in international settings and to build a global grassroots movement.
This report was the result of data gathered from 2,307 cancer survivors who voluntarily participated in the LIVESTRONG Survey for Post-Treatment Cancer Survivors initially launched in 2006. This report details the physical, emotional and practical of cancer survivors needs as outlined by cancer survivors themselves, providing a road map for future funding, research and advocacy.
During August 24–26, 2009, an unprecedented gathering of 500 delegates representing more than 65 countries occurred in Dublin, Ireland, at the LIVESTRONG Global Cancer Summit. This report outlines the events of those three days and highlights opportunities and strategies that were identified during the summit that collectively provide a unified multinational roadmap to making cancer a global priority.
Cancer is a global health challenge with an associated global economic burden. This report estimates the total economic liability of new cancer cases and allows us to put real dollars ($305 billion a year) to the pain and suffering that we already know exists. It presents the results of research and analysis of global expenditures for cancer control and provides detail by country, income group, and geographic region.
In November of 2007, Texas voters approved a landmark $3 billion initiative to establish the Cancer Prevention and Research Institute of Texas to make grants to create and expedite innovation in research, prevention and cures for all human cancers. The push for the initiative started at the grassroots level, spurred by patient advocates and cancer survivors. This case study details the legislative journey from start to finish.