A key role of the Holden Comprehensive Cancer Center is to collect and provide information about cancer that our researchers can use to find better ways of reducing the burden of cancer. This includes information on underlying genetics and lifestyle of patients. It includes analysis of cancers removed from patients so we can evaluate the genetic, molecular and cellular makeup of the cancer. Finally, it includes information on the response to cancer therapy including clinical response, side effects of therapy and quality of life. Given the complexity of cancer, robust information from a large number of patients is needed so we can conduct research that helps us determine what is best for each individual patient. Doing such research requires a partnership between researchers and patients who are willing to fill out surveys, provide blood samples and give us permission to use their cancer tissue and clinical information in research .
We are involved in a number of such research initiatives including some I have addressed previously in this blog. Some of these efforts, such as the tissue procurement core, involve providing left over cancer tissue (usually cancer that has been removed during surgery that is not needed to make a diagnosis for the patient) to our research laboratories. Others, such as the Molecular Epidemiology Resources, focus on providing clinical information and are based on a comprehensive and detailed registry where patient volunteers provide us with initial and follow-up information on their cancer therapy, side effects of therapy and quality of life. More recently, we have joined a major collaborative effort with 16 other cancer centers where we share this information so progress can be made much faster. This effort is known as ORIEN (for “Oncology Research Information Exchange Network”).
We never do research on a patient (or on information or tissue linked to a patient) without their permission. The vast majority of patients we have approached about participating in these efforts have been more than happy to do so, and we are forever grateful for their partnership. Overall, these resources are most valuable when we combine the clinical information from the patient, and the genetic and molecular information from the blood or cancer tissue, to determine how the molecular makeup of the cancer can be used to personalize cancer therapy for each patient. We increasingly look at collection of information and tissue samples (known as biospecimens) as a unified effort.
As we have developed new and better approaches to using information and cancer tissue for research, and most importantly, are having increasing success using this information to improve our ability to care for our patients, we have run into an unexpected logistical problem – the need to get separate consents from each patient volunteer for each research initiative separately (Tissue Procurement, Molecular Epidemiology, ORIEN, other more focused research projects). In some cases, we have been asking patients to read, agree to, and sign multiple different consent forms, each focused on a different research project that involves providing information or giving us permission to do research on their biospecimens. This is a major burden for our patients who want to contribute to cancer research, but are already feeling the incredible stress that comes with a cancer diagnosis.
After extensive discussion, including with patients and various human research oversight committees, we have developed a unified consent process that covers all of these projects. This includes a single consent document that informs patients about our research, and asks them to consent to have their clinical information and left over tissue used for cancer research. When patients provide us with this permission, we can then use that information and tissue for a broad range of cancer research projects.
We first called this our “unified biorepository consent” but that seemed to be a pretty lame name that does not highlight how this collaborative and overarching effort represents a major cancer research partnership with our patients. So, after much discussion and consideration of various names and acronyms, we present to you the “PERCH.” PERCH stands for “Patients Enhancing Research Collaboration at Holden.” In addition to emphasizing the partnership with patients, we hope this name illustrates how this program puts us on a perch that allows us to see and move towards a broad range of future cancer research possibilities, with the overall goal of making research findings that benefit our patients, as quickly as possible. We are extremely grateful to the many patients who have placed their trust in us, and are partnering with us in cancer research through the PERCH effort.
I tend to be a visual person, and can just imagine a cartoon for PERCH that would go with the newsletter we plan to share with PERCH contributors that would provide an update on our research. Perhaps a hypothetical patient on a branch overlooking a field of research opportunities? If any of you are graphic artists and would like to take a shot at such an illustration, we would welcome your help!