Patient-generated health data: a pathway to enhanced long-term cancer survivorship

J Am Med Inform Assoc. 2016 May;23(3):456-61. doi: 10.1093/jamia/ocv184. Epub 2015 Dec 29.


The growing ability to collect and transmit patient-generated health data, also referred to as people-generated health data and patient-reported outcomes, is creating an opportunity to greatly improve how cancer survivors and their providers manage survivors' health in the months and years following cancer treatment. Although cancer survivors are at higher risk of chronic health problems and early death as a result of cancer treatment, some experience difficulty identifying and receiving the care they need to optimize their health post-treatment. This article describes the challenges that cancer survivors and their providers face in managing survivors' care and identifies several ways that using patient-generated health data can improve survivors' and providers' ability to manage survivorship care at the individual and population levels.

Keywords: cancer survivorship; patient outcome assessment; patient participation; patient-generated health data; survivors.

MeSH terms

  • Cancer Survivors*
  • Humans
  • Neoplasms / complications
  • Neoplasms / therapy
  • Patient Generated Health Data*
  • Patient Participation*
  • Patient Reported Outcome Measures
  • Precision Medicine
  • Self Report
  • Self-Management*
  • Survivorship