Barriers for patient-reported data collection, exploring the challenges, and solutions

Thamer  Al Edreesi

Authors

Dr. Thamer Al Edreesi Assistant professor at of Department of Health Informatics, CPHHI, KSAU-HS. Riyadh, Kingdom of Saudi Arabia,

Keywords:

Data collection barriers, Self-reported information, Privacy, Qualitative research, Theme-based analysis

Abstract

Background: The patient-reported data is the primary source for studying patient-related topics such as treatment satisfaction, quality of life, compliance to treatment, and many others. Collecting the data could be from surveys or interviews. To make use of patient-reported data, quality, reliability, and validity of the data must be considered before using the data. There are many difficulties associated with collecting data from patients. Recall bias is one of the expected issues with patient-reported data. Patients may have difficulties remembering clinical encounters or relevant information about symptoms or medication side effects. Problems include over-reporting or under-reporting of information. Factors affecting the recall bias include many factors such as cognitive problems, memory issues, and a long time (more than six months) between the encounter and recalling the details.

Aim: The aim of this study is to identify the barriers that prevent patients from providing valid data for clinical or research purposes focusing on the population of Saudi Arabia.

Methods: An online survey that discusses data collection barriers was distributed to clinicians and researchers who have experience in the field. We applied theme-based analysis to analyze the responses and identify the most relevant barriers and the solutions suggested by the respondents.

Results: Our sample included six participants with experience ranging from 10 to 33 years. The main issues for patient-reported data collection were fear of judgment and concerns for information privacy. The respondents suggested to assure the patients or collect the information using anonymous electronic surveys.

Conclusion: Patients/participants in the kingdom, similar to patients in other countries, are concerned about the exposure of personal information that may fear that it exposes them to societal judgment. Assurance of privacy and establishing trust with the patient allows for better collection of valid data.