Cancer Survivors Can Make a Difference in Research

There are almost 14 million cancer survivors in the United States. Nearly 1.7 million new cancers are diagnosed each year, and two-thirds of patients diagnosed with cancer survive for five years or more. In fact, nearly 40 percent of all Americans will be diagnosed with cancer during their lifetime, and the number of cancer survivors is expected to grow to nearly 18 million by 2022.

Many cancer survivors and their family caregivers respond to their experiences by engaging in activities to improve care for people diagnosed with cancer in the future. This year, on National Cancer Survivors Day (June 7), we want to express our appreciation to those survivors and families by sharing some examples of the important contributions cancer survivors and their families are making to PCORI-funded research projects. Taken together, these projects are designed to help people affected by cancer make more-informed decisions about their care.

In this blog post, we highlight some projects that address:

Boosting Screening Rates

Detecting cancer early through screening is likely to improve a person’s chance of survival; however, there can be many barriers to screening. Current research is exploring ways to lower those barriers and help people make better-informed decisions regarding screening.

A project conducted in community health centers in the Bronx, New York, is testing whether a program that combines cancer screening with depression care is more effective than an existing cancer screening program at increasing screening rates in women diagnosed with depression.

Margaret Glean, a cancer survivor involved in the project, says, "I was diagnosed with uterine cancer in 2005, and it was indeed very scary. Since then, I have become an advocate of cancer screenings. In this research project, I help with outreach and recruitment and provide support as the researchers work with older women. For example, at a lunch education session, I interacted with women to explain the importance of early screenings."

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Improving Treatment Outcomes

Researchers are working on patient-centered approaches to make cancer treatments more effective. Approaches include helping patients cope with symptoms and manage their medications, providing access to coordinated care, and improving patient-clinician communication.

A project in Massachusetts is developing a mobile application to help people with cancer cope with their symptoms and effectively manage oral chemotherapy medications. Cancer survivors and family caregivers have reviewed all of the content of the app, provided feedback on recruitment procedures, and assisted with user testing. Principal investigator Joseph A. Greer, PhD, of Massachusetts General Hospital says, “Because of their insights, the scope of the application has expanded to include features that promote wellness, such as energy tracking, nutrition information, and social networking resources.”

Carole Seigal, a family caregiver and advisor to the study, says, “I have enjoyed being a stakeholder for this study. Dr. Greer and his team provided various opportunities, both in a large group and a small intimate setting for us to provide feedback.”

Says David McCue, another family caregiver and study advisor, “It’s great to know that people can benefit from what I have been through.”

A project at Baptist Memorial Hospital in Tipton, Tennessee, is examining the effectiveness of coordinated multidisciplinary treatment for lung cancer in a regional hospital system. The study will compare outcomes for patients receiving care either via a new model of multidisciplinary care or via traditional care, in which the patient—through a sequence of referrals—sees independent specialists.

Cancer survivors, through surveys and focus groups, helped design the multidisciplinary model. They suggested patient-centered endpoints including satisfaction with the medical care experience, timeliness and appropriateness of care, and survival.

Cancer survivor Mark Ill recalls his experience with lung cancer as “running through a maze, bouncing off walls and hitting dead ends.” Now on a team establishing a multidisciplinary patient-centered care clinic, he says, “We hope to avoid the frustration, confusion, and fear encountered during diagnosis, treatment, and recovery. The end of the maze could be in sight, and, in place of the maze, we’ll have coordinated patient care in one location.”

Aging is the biggest risk factor for developing cancer. Approximately 60 percent of all cancers occur in persons 65 years of age or older. A study in New York is striving to improve communication about age-related concerns between community oncologists, older adults with advanced cancer, and their caregivers that could affect chemotherapy outcomes.

"This PCORI-funded project has truly taught me about the benefits of conducting research in partnership with patients, caregivers, and advocates," says principal investigator Supriya Mohile, MD, MS, of the University of Rochester. "I will never again be able to conceptualize or implement a research project without the input of these important stakeholders."

Cancer survivor Beverly Canin says, "I helped design, and I chair, the 13-person stakeholder advisory board. In that role, I work with amazing older cancer patients, caregivers, and advocates. We’ve created acronyms, logos, and a brochure; streamlined consent forms; suggested changes in study protocol; edited questionnaires; written a guide for and role-played recruiting patients for the study. We feel we really make a difference."

PCORI has recently begun making awards for large-scale studies conducted in routine clinical settings. One of these awards aims to reduce a serious side effect of chemotherapy. This pragmatic clinical study evaluates the effectiveness of a guideline-based system to help oncologists decide when to prescribe a medication (known as colony stimulating factors) to reduce risk of infection.

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Facilitating Post-Treatment Survivorship Care

Even when cancer treatment ends, many survivors face ongoing physical, emotional, and practical challenges. Patient-centered research is beginning to seek evidence to shape development of the best content for, and models of, comprehensive, post-treatment follow-up care.

A project in Washington, DC, asked survivors, in focus groups and through a national survey, what services they needed after completion of treatment. It also determined care currently available. The study will then compare how different follow-up care models affect outcomes important to survivors.

Says principal investigator Holly Mead, PhD, of George Washington University, “The project has engaged cancer survivors in important ways to ensure the patient perspective is front and center. Survivors both from our community advisory board and our network reviewed and provided feedback on the tools used to develop our framework for survivorship care and the framework itself.”

Cancer survivor Cindy Cisneros, who chairs the project’s advisory board, says, “It’s very rewarding to have the opportunity to provide input and share my experiences with the project staff and fellow advisory board members to help other survivors navigate their decision making and improve the standard of their care.” 

Another project, by the National Marrow Donor Program in Minnesota, is evaluating the impact of personalized care plans on patient-centered outcomes among survivors of blood cancers and some other diseases who were treated with hematopeietic stem cell transplantation. A recent article describes that project. Furthermore, one of our most recent awards addresses how oncologists and cancer survivors plan post-treatment care. The researchers will compare patient-centered outcomes among cancer survivors, in an urban and a rural community, who have used one of three survivorship care planning models.

Cancer treatment and survivorship care planning merge in an innovative model of patient-centered oncology care that aims to improve both the quality of cancer care and patient experiences. A PCORI-funded project by the National Committee for Quality Assurance is implementing and evaluating that model at oncology practices in southeastern Pennsylvania.

Patients and family members on the project’s executive committee and advisory panel have emphasized that oncology practices, beginning at diagnosis, need to ask patients about their life goals and focus on quality of life. Says Lillie Shockney, a cancer survivor on the advisory panel, "I feel strongly that if we don’t apply survivorship care at the moment of diagnosis then we are failing the patient."

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Developing More Robust Research Infrastructure

To promote more efficient and patient-centered comparative clinical effectiveness research, PCORI is developing a national data network and building a nationwide community of patients and other stakeholders with the expertise and passion to partner in such research.

PCORI is supporting the development of PCORnet, the National Patient-Centered Clinical Research Network, which aims to transform clinical research by engaging patients, providers, and health systems in collaborative partnerships to improve healthcare and advance medical knowledge.

One of the patient-led research networks that is part of PCORnet is ABOUT (American BRCA Outcomes and Utilization of Testing), a collaboration—led by patient advocates—between the national nonprofit advocacy organization Facing Our Risk of Cancer Empowered (FORCE) and researchers at the University of South Florida. This network, which focuses on hereditary cancers, enrolls people with a family or personal history of breast, ovarian, pancreatic, and prostate cancers and melanoma and people who have undergone genetic testing for inherited mutations, such as BRCA, PALB2, and PTEN, associated with a high risk for these cancers.

Sue Friedman, one of the leaders of this network, says, “Eighteen years ago, when I had to make decisions concerning my hereditary cancer, there was not much information available. My experience motivated me to start FORCE to get involved in, and accelerate, research. An exciting thing about the ABOUT network is the path we are providing for cancer survivors and previvors (people at high risk for cancer) to have their voices heard to drive research.”

PCORI also funds individuals and groups with healthcare research ideas and enthusiasm for patient-centered research through its Pipeline to Proposal initiative, which is designed to create partnerships that lead to high-quality research proposals. Seven of the awards support projects that involve cancer survivors. In one project, a community-researcher collaboration is creating an infrastructure for large-scale comparative clinical effectiveness research aimed at reducing melanoma-related mortality.

Katie Wilkes, a melanoma survivor who is leading the project, says, “The biggest, most exciting thing that I’ve been involved in during our project was to help get the new melanoma community registry up and running at Oregon Health and Science University. I don’t know any other patient advocate who’s been a project director on a melanoma research project. It’s been very exciting and is opening up a lot of opportunities.”

PCORI is also funding many other research projects addressing cancer screening, treatment, and survivorship care. You can learn about them by searching our database of funded projects.

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