Incorporating patient generated health data into pharmacoepidemiological research

Epidemiology and pharmacoepidemiology frequently employ Real‐World Data (RWD) from healthcare teams to inform research. These data sources usually include signs, symptoms, tests, and treatments, but may lack important information such as the patient's diet or adherence or quality of life. By ha...

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Bibliographic Details
Published in:Pharmacoepidemiology and drug safety 2020-12, Vol.29 (12), p.1540-1549
Main Authors: Bourke, Alison, Dixon, William G., Roddam, Andrew, Lin, Kueiyu Joshua, Hall, Gillian C., Curtis, Jeffrey R., Veer, Sabine N., Soriano‐Gabarró, Montse, Mills, Juliane K., Major, Jacqueline M., Verstraeten, Thomas, Francis, Matthew J., Bartels, Dorothee B.
Format: Article
Language:English
Subjects:
big data
data privacy
digital epidemiology
Epidemiology
Humans
Medical treatment
mobile apps
mobile health
Patient Generated Health Data
Patient Participation
patient reported outcomes
Pharmacoepidemiology
Quality of Life
real world data
real world evidence
social media
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Summary:Epidemiology and pharmacoepidemiology frequently employ Real‐World Data (RWD) from healthcare teams to inform research. These data sources usually include signs, symptoms, tests, and treatments, but may lack important information such as the patient's diet or adherence or quality of life. By harnessing digital tools a new fount of evidence, Patient (or Citizen/Person) Generated Health Data (PGHD), is becoming more readily available. This review focusses on the advantages and considerations in using PGHD for pharmacoepidemiological research. New and corroborative types of data can be collected directly from patients using digital devices, both passively and actively. Practical issues such as patient engagement, data linking, validation, and analysis are among important considerations in the use of PGHD. In our ever increasingly patient‐centric world, PGHD incorporated into more traditional Real‐Word data sources offers innovative opportunities to expand our understanding of the complex factors involved in health and the safety and effectiveness of disease treatments. Pharmacoepidemiologists have a unique role in realizing the potential of PGHD by ensuring that robust methodology, governance, and analytical techniques underpin its use to generate meaningful research results.
ISSN:1053-8569
1099-1557
DOI:10.1002/pds.5169