Patient Reported Data taken out of the trash

Ever heard the term “Garbage in, Garbage out”? If you work in hospital administration or research this term is often used when discussing the quality of information. When poor quality data is collected (garbage in), the results will be compromised (garbage out). Therefore collecting reliable information is a top priority and mechanisms or processes used to collect that data have been heavily scrutinized.

Until recently, most of the data collected on patients has been inputted by healthcare professionals into medical records, as third party recorders (a type of screening analysis) of what is medically relevant. Increasingly EHRs provide prompts for healthcare professionals to standardize data collection. More recently physiological data (Patient Generated Data) collected by wearables has been directly processed as reliable data. In both these instances the patient is passive in the documentation process of the data. Patient Reported Data (PRD), (sometimes also described as Patient Generated Data) is the situation where the patient directly inputs information into a data collection system. Until recently, this information, PRD, has been considered as “garbage in” that is, not considered reliable enough for record, action or analysis.

This month has seen a great step forward in the recognition of Patient Reported Data when government, industry and a patient advocacy not-for-profit group, joined together and validated the collection of Patient Reported Data (PRD). The FDA announced a collaboration with Patients Like Me to collect Patient Reported/Generated Data from their site to record drug interactions from medications used for multiple sclerosis.

“The PatientsLikeMe data are generated in a different context by patients themselves, and provide important real-time insights into the nuances inherent in patients’ experiences over time, including drug tolerance, adherence and quality of life.”

PRD has come out of the trash! The patient’s direct voice is legitimate. It recognizes the importance of the patient’s perception and experience. It is a step towards including patients as partners in care.

It also opens the door to a series of next steps and a number of questions.

Is there more opportunity to collect PRD in healthcare? Yes. Could this be game-changing? Yes Are there challenges to collecting PRD? Yes.

While the potential benefits are astronomical, I believe this is a fragile opportunity and the potential challenges need careful consideration. The current processes of data collection are healthcare provider focused and not user friendly. Patients are extremely diverse - in health literacy, language and culture. Those least engaged or activated in the healthcare system have the poorest outcomes, and will be most challenged by PRD.

The devil will be in the details. When healthcare organizations implement PRD, they would be wise to consider the patient as users and accommodate their wide variability with technology that is accessible, simple, engaging and versatile. Otherwise we will still have “garbage in”.

Nina Chen