Tailored online personal health record cancer tool increases survivor adherence to national guidelines

INDIANAPOLIS – Use of the Personal Health Record for Colorectal Cancer Survivors, a new online tool specifically tailored to meet the needs of and make support available for the more than 1.5 million individuals in the U.S. with a history of colorectal cancer, produced a significant increase in adherence by survivors to national guidelines recommending critical follow-up, especially colonoscopy surveillance and blood work. A feasibility study from Regenstrief Institute, the VA, and Indiana University’s schools of medicine and nursing research scientists validates functionality of the patient-centered tool they developed, opening the door for their larger study of the tool’s use by those navigating the path forward following colorectal cancer surgery.

Unlike electronic health records, which are managed by clinicians and healthcare systems, the Personal Health Record for Colorectal Cancer Survivors is controlled by the survivors themselves. The online tool is securely available when and where the survivor wishes to access it to view contents or add information.

This personalized focus enables colorectal cancer survivors to track, help manage and mitigate the impact of their disease -- given its specific location and stage as well as other medical conditions and current treatment. Features of the tool include an updateable summary of cancer treatment history, a follow-up care and surveillance schedule, reminder functions, identification of role-based individuals (primary care physician, oncologist, social worker, caregiver) with whom they may wish to share all or portions of their personal health record, specifics on side effects of prescribed medications, community resources and other useful, personalized functions -- such as a secure message capability -- which enables patients to send and receive messages from individuals with whom they have created a relationship. This might include clinicians, family members, friends or other colorectal cancer survivors.

The Personal Health Record for Colorectal Cancer Survivors also provides survivors with the opportunity to enter information about symptoms they may be experiencing – for example, pain, anxiety, depression, sleep problems, fatigue – and generates a timeline tracking the intensity of the symptoms over the short and long term. Based on this information, the tool provides them with tips or self-management approaches to address those symptoms at home, or, if the symptoms reach a high-level of severity, the tool guides them to connect with their providers.

“This is a system that we built leveraging OpenMRS, an open source electronic medical record system platform developed at the Regenstrief Institute, and tailored it to respond to and meet the specific needs of colorectal patients and survivors. It’s really a shift in who has access, even ownership of the survivor’s health record,” said Regenstrief Institute Center for Health Services Research Director David Haggstrom, M.D., MAS, senior author of the new study and co-designer of the online tool. “Combining patient-centered design with our extensive experience with doctor-patient communication and electronic medical records we saw an increase in adherence to national guidelines recommending critical follow-up by colorectal cancer survivors using the tool.” Dr. Haggstrom also is a research scientist at the Richard L. Roudebush Veterans’ Administration Medical Center in Indianapolis, an associate professor at IU School of Medicine and a researcher at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

According to the American Cancer Society, approximately one in 23 men and one in 25 women in the U.S. will be diagnosed with colorectal cancer in their lifetime. For many, their cancer will reoccur after surgery underscoring the critical need for post-procedure follow-up. The World Health Organization lists colorectal cancer as the second most common cause of cancer death in the world in 2020 with 916,000 fatalities.

The tool is focused on activating survivors, giving them the ability and confidence to play a role in managing their own care when faced with a potentially life-threatening disease. Going forward, the researchers will explore ways for users to integrate the tool into their stressful lives and plan to work with clinicians and administrators on how this patient-centered technology can potentially be paired with the patient’s electronic health record.

“The general framework that we’ve taken with colorectal cancer survivors is one that can serve as a guide for designing technologies for other cancer populations or types of cancer. But, in my experience, the clinical details and unique needs of different types of cancer require different approaches,” said Regenstrief Institute Research Scientist Eric Vachon, PhD, R.N., the study’s corresponding author whose research is focused on the symptom management of cancer patients and on the integration of patient-reported outcomes and symptoms within electronic medical records. Dr. Vachon also is an assistant professor at IU School of Nursing and a researcher at the IU Simon Comprehensive Cancer Center.

“I think that there is a huge opportunity to implement personal health records among all types of cancer more widely and to design and test them for the many types of cancer there are,” said Dr. Haggstrom. “When people think about cancer, they often think of a large monolithic disease, and along with heart disease, cancer is indeed one of the two most prevalent diseases among the U.S. population. But cancer is many diseases and they all require their own unique approaches, so there is much work ahead of us all – clinicians, research teams, patients and caregivers."  

According to the Centers for Disease Control and Prevention (CDC) one in three people living in the U.S. will have some type of cancer during their lifetime. Approximately 600,000 people in the U.S. die of cancer annually.

“Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study” is published in JMIR Cancer. In addition to Drs. Haggstrom and Vachon, colorectal surgeon Bruce W. Robb, M.D., of IU School of Medicine, is an author.

Funding for this project was provided by the Livestrong Foundation and the U.S. Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, Health Services Research and Development Project #CDA 07-016. Funding was also provided by the National Institutes of Health/National Cancer Institute Training Grant T32CA117865.

David A. Haggstrom, M.D., MAS  

In addition to his role as director of the Regenstrief Institute’s Center for Health Services Research, David A. Haggstrom, M.D., MAS, is a core investigator for the U.S. Department of Veterans Affairs Health Services Research and Development Center for Health Information and Communication, Richard L. Roudebush VA Medical Center. He is also Sam Regenstrief Scholar in Health Sciences Research and an associate professor of medicine at Indiana University School of Medicine and a researcher at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

About Eric Vachon, PhD, R.N.

In addition to being a research scientist at the Regenstrief Institute, Eric Vachon, PhD, R. N., is an assistant professor at Indiana University School of Nursing and a researcher at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

About Regenstrief Institute 

Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.

Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.

About the VA Health Services Research and Development Center for Health Information and Communication

Located at the Richard L. Roudebush VA Medical Center, the Health Services Research and Development (HSR&D) Center for Health Information and Communication (CHIC) group is a diverse cadre of researchers collaborating to transform the healthcare system, both within and outside the VA so every patient receives consistent, high-quality care.

About IU School of Medicine 

IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.

About IU School of Nursing

Indiana University School of Nursing is one of the largest nursing schools in the nation that offers a full range of programs from undergraduate to doctoral. Almost 23,000 IUSON alumni across the globe are empowered to be leaders in clinical practice, research, education, and innovation. The School’s Master’s program is ranked in the top 30 nationwide by U.S. News & World Report Best Graduate Schools Rankings, and the Bachelor’s in Nursing Science is ranked #1 in Indiana by U.S. News & World Report Best Colleges rankings.