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Pilot Study - Follow up care among vulnerable cancer survivors:

With support from the IU Simon Cancer Center pilot program, a longitudinal cohort study is being performed using cancer cases diagnosed in the state of Indiana from 2001 to 2010. Cancer cases are being linked with electronic health record and administrative data via the Indiana Network for Patient Care (INPC), maintained by the Regenstrief Institute. Electronic health records are being used to determine whether there are differences in the quality of surveillance testing for cancer recurrence among socially vulnerable populations in terms of both overuse and underuse.
Aim 1: Describe state population-based patterns of guideline-concordant surveillance tests (underuse) and high-cost imaging (overuse) among cancer survivors
Aim 2: Test the association of social determinants (race/ethnicity, gender, and insurance status) with patterns of surveillance tests, in terms of both underuse and overuse

Burdette Portal:

The Burdette Cancer Portal is a site dedicated to providing information and education about cancer to everyone, and especially to those impacted by cancer, either as a cancer patient, a caregiver for a cancer patient, or a loved one of a cancer patient. Much of the work for the Burdette Cancer Portal has been done in collaboration with the Mary Margaret Walther Program for Cancer Care Research of the IU School of Nursing. 

To learn more:

Other projects:

  • Regenstrief Institute is testing an innovative new electronic Patient-Reported Outcomes (ePRO) platform in the fall of 2014 at Eskenazi Health.  Patient reported outcomes are of critical value in clinical care, research, quality improvement, and other healthcare processes, yet are often difficult to obtain. The new ePRO platform will allow such information to be captured, stored, and presented during the course of a typical office visit. This project is a feasibility study of the implementation of a patient-centered technology to capture ePRO measures during the course of clinical care.  The routine, efficient capture of this information could make a significant contribution to patient care and advance research for many conditions.  This pilot study aims to evaluate the feasibility of using an ePRO technology platform for identifying patients that meet pre-existing criteria and then delivering tailored matching questions to patients with a user interface that can deliver patient-specific questions both in-person (point of care) and virtually. Also, we can facilitate the downstream delivery of responses in structured form to the INPC to support decision support, research, quality, and other initiatives linking ePRO with clinical data.
  • “Disparities in access to colorectal cancer follow-up surveillance care” (Livestrong, completed): Little is known about how much care received by colorectal cancer survivors in the VA or elsewhere is concordant with clinical guidelines. To promote appropriate follow-up care, the Institute of Medicine strongly recommended survivorship care plans. To meet the needs of patients, the informatics community has promoted the use of electronic personal health records.
    • Methods: Our study had 3 phases: (1) a large, observational study following the care received by approximately 14,000 colorectal cancer cases diagnosed in the VA system, (2) a human-computer interaction study of a newly designed Web-based, patient-controlled health record (PHR) gathering input from health care providers, patients, and caregivers, and (3) a feasibility study enrolling colorectal cancer survivors to estimate the effect of the PHR upon patient knowledge and adherence with guideline-concordant surveillance.