Using data collection and coordination to improve quality of life

Approximately one in two men and one in three women will be diagnosed with cancer at some point in their lifetime. In 2012, there were approximately 14 million cancer survivors living in the United States, and this number is expected to grow to 18 million by 2022. These cancer survivors have a variety of healthcare needs, including follow-up for their cancer and its effects, general primary and preventive care, and in many cases, care for conditions other than their cancer (such as diabetes or heart disease).

Dr. Claire Snyder of the Johns Hopkins University School of Medicine and Bloomberg School of Public Health aims to transform cancer care by making patients' well being just as much a part of treatment monitoring as laboratory tests, imaging studies, and other clinical information.

  • Dr. Snyder and her colleague Dr. Albert Wu have developed the PatientViewpoint Web tool (www.PatientViewpoint.org) to facilitate the collection and use of quality-of-life data in clinical care. PatientViewpoint allows clinicians to order questionnaires for patients to complete, much in the same way that they would order a laboratory test or imaging study. The results are provided to both patients and clinicians and help identify well-being issues (such as sexual function and body image) to promote better communication between patients and care providers.

  • The individual patients' quality-of-life data can be combined in a database, creating a powerful resource to track how populations of patients are doing and inform quality improvement. The data become even more powerful when linked with clinical information from, for example, the electronic medical record. The team can then compare how different treatments work in real-world samples of patients on an ongoing basis, providing further insights into how to improve the quality-of-life and care for cancer patients.

Aside from a cancer diagnosis, the other health concerns of cancer patients (such as diabetes and high blood pressure) demand attention, requiring coordination between primary care and cancer providers. Tools to facilitate this coordination are scarce, and improving the overall care of cancer patients is a crucial concern.

  • Dr. Snyder's team has performed a number of studies using a large national database to evaluate the preventive and comorbid condition care received by older cancer patients.

  • The team is working to identify tools and interventions that can improve coordination between primary care and cancer providers to ensure that the overall health care needs of patients are addressed.

  • Dr. Snyder's research in care coordination informed the strategies used at Johns Hopkins for managing cancer patients, where there is a close relationship between the cancer center and the primary care division.

Like most people, Dr. Snyder has witnessed the impact of cancer on the lives of people she cares about, both for those who eventually succumb to the disease and for long-term cancer survivors. As a faculty member of the Johns Hopkins Schools of Medicine and Public Health, Dr. Snyder's research aims to transform cancer care to improve the quality of life and care for cancer patients and survivors.

Dr. Snyder plays a leadership role in the quality of cancer care at local, national, and international levels.  She is president-elect of the International Society for Quality of Life Research and leads international efforts to develop guidelines for using quality of life and patient reported outcomes in clinical care. For the American Society of Clinical Oncology (ASCO), she served on the Health Services and Quality of Care committees, and currently serves on ASCO Task Forces related to patient-reported outcomes and survivorship care planning. She is widely published in the area of cancer care quality and is a sought-after speaker, having presented invited lectures around the globe.

Dr. Snyder previously worked in the Outcomes Research Branch of the National Cancer Institute where she served as the initiator of the Cancer Outcomes Measurement Working Group and was heavily involved in the quality of cancer care research initiative. She co-edited Outcomes Assessment in Cancer: Measures, Methods & Applications (Cambridge University Press), which reports the Working Group's findings.

National Institutes of Health Merit Award, 2004

for advancing the science in cancer outcomes measurement in research and applications to improve the quality of cancer care

Delta Omega Honor Society, Member

New Investigator Award Finalist, International Society for Quality of Life Research, 2008

Oral presentation category