I spent Friday attending a part of LIVESTRONG’s Centers of Excellence Network meeting. As a member of our Research and Evaluation team, part of my job is to work with this group of folks to support them in conducting research that is “people-focused,” rather than disease-focused. No test tubes, no mice, no lab coats. Simply put, our work is about the lives of people affected by cancer. We aim to improve the health care that cancer survivors get, and make it more available to all survivors.
For context, the Centers of Excellence is a network of seven National Cancer Institute designated comprehensive cancer centers that offer information, care and services to cancer survivors, their family members and health care providers. Since 2005, the network has developed, evaluated, and helped spread best practices in survivorship to national and international audiences. A good example of this work is the LIVESTRONG Essential Elements of Survivorship Care brief, which outlines the basic steps that health care system should be taking to address unique needs faced by cancer survivors.
We reviewed two of the network’s current areas of work: Patient-Reported Outcomes, and the Young Adult Survivorship study. Patient Reported Outcomes (PRO) in a nutshell, are data about patients’ lifestyles, preferences, and needs in their day-to-day life. Instead of collecting this information in the doctor’s office, the study will collect it in a web-based (or paper) form, and then send a report to doctors for the actual visit, so they have a better sense of what questions, follow-ups, referrals, medications or other care might be necessary.
The Young Adult (YA) Survivorship study builds on this work by collecting such PRO data in initial and ongoing surveys. By comparing outcomes for patients who receive different kinds of care, the overall goal is to examine how giving people better information and resources in a specific survivorship visit might make a difference in their long term health. By building the evidence base for such specialized visits for survivors with this study, we aim to grow the availability of such programs for people everywhere.
We also had a brief update on our newest project, a feasibility study of a new IT tool that makes it easier to complete a LIVESTRONG Survivorship Care Plan by integrating with data from electronic medical records and cancer registries. The goal here is to make this process so easy that eventually, any doctor can provide them to their patients.
To be sure, this work is a lot more complex than it might seem. The discussion spanned different scales for symptom reporting, which outcomes make sense to measure, challenges of streamlining data from different medical data warehouses, and survey methodology (stratified randomization, anyone?). Yet whenever I found myself feeling lost, the topic would shift back to the patient: How do we have to design studies so they don’t ignore uninsured or under-insured patients? How do we compare lifestyle impacts on people with vastly different lives – like those with and without children? Don’t “young adults” use the Internet a lot more than we’re giving them credit for in sending them paper studies?
At the core of our research efforts, we strive to make survivorship care a more tightly-knit part of the system for all, by ensuring doctors and patients are well-informed and well-equipped at all times. This meeting reminded me that this remains a challenge because cancer is much more complicated than a survivorship follow up visit – different specialties, regulations, data sources, research protocols. Similarly, people consist of much more than a particular group of cells – we all have unique hobbies, feelings, dreams, passions. At the heart of LIVESTRONG and our Centers of Excellence’s research efforts, we are trying to make sure that when patients are treated for cancer, we don’t stop treating them like people, too.