Research on self-reported diagnoses of multiple sclerosis within the PatientsLikeMe community found the data pretty accurate when matched with insurance claims, according to a study published at the Journal of Medical Internet Research.
Calls for physicians to better incorporate patient-reported data have been met with uncertainty about the accuracy of information collected online, and previous research has indicated the need to verify it, which could be labor-intensive and time-consuming.
Members of PatientsLikeMe with MS or Parkinson's Disease were invited to join the study. Of 603 consenting patients, 94 percent could be matched with IMS Health medical and pharmacy claims data. The records confirmed a MS diagnosis for 93 percent of patients who reported it.
Researchers also found a rate of agreement on any reported treatment was 59 percent, while the figure rose to a range of 73.5 percent to 100 percent on treatments used within the past five years.
The study confirmed that it's possible to match patient identities between the two data sources, the authors state, and that patients were able to accurately report their diagnosis and to a lesser degree their treatment.
However, they note a number of limitations: the study excluded patients who paid in cash, were uninsured or used pharmacies not covered in the database, and PatientsLikeMe members tend to be better educated, female, white and technologically savvy. Results could vary for other populations.
"The further integration of traditional claims or healthcare-system generated data, coupled with patient-reported data will continue to bring about ever new opportunities to study disease, patient experience, and the applications of health care services," the authors wrote.
To learn more:
- here's the research