Study Rationale:
Using the Fox Insight research platform, we extracted and analyzed reports in patients’ own words about what problems bother them and how these problems affect their daily functioning (PD-PROP study). Now that reporting has grown to more than 20,000 persons, including substantial follow-up experiences at six-month intervals, analysis of data over time is at hand. This knowledge will be valuable to better understand how Parkinson’s disease (PD) develops and changes over time.
Hypothesis:
Understanding patient-reported problems and their impact on daily functioning over time, as well as the medications patients take, will provide vital and unique perspectives to understand unmet needs that patients face and how to best treat and care for those affected by PD.
Study Design:
We will use a defined set of simple open-ended questions, without personal identifying information, that are answered every six months, about patient experiences and the consequences of those problems. People with PD will find these questions on the Fox Insight platform and can answer them by typing in their responses on a keyboard. We will apply computer science tools to analyze the patients’ own words to determine the patterns and accuracy of the reports and develop a vocabulary of words that best express the patient-reported experience of PD.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
Having a reliable and reproducible way to gather and analyze the actual words that patients report about their PD experience will enable patients, caregivers, clinicians and developers of medical products to better understand PD; how it changes over time; and how best to measure, anticipate and treat the problems.
Next Steps for Development:
The research tools and approaches can, in turn, be applied to improve patient meaningfulness in clinical care and the development of patient-centered outcomes for clinical trials.