A CRITIQUE OF YOUTUBE AS A DATA SOURCE FOR THE QUALITATIVE EXPLORATION OF PATIENT REPORTED INFORMATION ON ACUTE MYELOID LEUKEMIA.

Author(s)

Crawford SR1, Bell T2, Rushton R3, Doward L1
1RTI Health Solutions, Manchester, UK, 2Pfizer, New York, NY, USA, 3RTI Health Solutions, Didsbury, UK

OBJECTIVES: The rapid increase of social media and integration of online interaction in regular daily-life, provides researchers with the opportunity to study issues important to patients in an organically occurring setting. The aim of this study was to explore the feasibility of using YouTubeTM as a data source for qualitative exploration of the patient-experience of living with Acute Myeloid Leukemia (AML), focusing on AML patients likely ineligible for intensive chemotherapy. METHODS: A search of YouTubeTM was performed, focusing on patient stories of living with AML. Selection criteria included patient-age (≥60 years: self-reported/researcher-observed), and treatment type (low-intensive treatment/palliative-care or chemotherapy). Video footage was manually reviewed, and content analysed thematically to address key research questions on treatment decisions/preferences. RESULTS: TM as a data source included easily accessible data, removal of patient burden, removal of interviewer bias and recall issues inherent with traditional data-collection methods. Limitations included: lack of control of video content (relevant content often embedded within irrelevant narratives) and patient sample characteristics; potential bias towards younger video uploaders; and potential variation between patients’ online- and offline-behaviour. CONCLUSIONS: This study illustrates the challenges and opportunities associated with using a social media platform such as YouTubeTM to collect patient reported information and demonstrates how this data source can provide valuable insights into the patient disease-experience that may not be captured using traditional data collection methods.

Conference/Value in Health Info

2018-11, ISPOR Europe 2018, Barcelona, Spain

Value in Health, Vol. 21, S3 (October 2018)

Code

PRM205

Topic

Methodological & Statistical Research

Topic Subcategory

PRO & Related Methods

Disease

Oncology

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