title: The value of data collection within a palliative care program.
abstract: Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.
authors.affiliation: Duke Cancer Care Research Program, Duke Cancer Institute, Durham, NC, USA.
authors.forename: Arif H
authors.initials: AH
authors.lastname: Kamal
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
authors.forename: Christine
authors.initials: C
authors.lastname: Ritchie
authors.forename: Janet
authors.initials: J
authors.lastname: Bull
authors.forename: Jane L
authors.initials: JL
authors.lastname: Wheeler
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
mesh_terms: D003625:Data Collection; D003695:Delivery of Health Care / Q000379:methods; D006801:Humans; D017063:Outcome Assessment, Health Care; D010166:Palliative Care / Q000379:methods* / Q000458:organization & administration; D011787:Quality of Health Care