Challenges in Using Insurance Claims Data to Identify Palliative Care Patients for a Research Trial

Little is known about strategies for enrolling patients in home-based palliative care programs despite the need to conduct effectiveness studies of this emerging industry.

We used medical claims data from Accountable Care Organizations in California to identify patients for a randomized controlled trial of home-based palliative care. We report outcomes from this strategy and the implications for future research.

Claims data identified 1357 patients. Research assistants could not reach 986 patients (72.7%), usually because the phone calls went unanswered (38.5%) and many patients' phone numbers were missing or incorrect (16.3%). Of 371 patients reached, 163 opted out. Of 208 patients screened, 177 were ineligible for the trial. Just 10 patients were enrolled.

Our findings suggest that medical claims data may not be useful for engaging patients potentially eligible for palliative care research trials. We recommend that alternative identification and recruitment strategies be considered.