Online Patient-Reported Data Inform, Refine Quality Improvements in Health Care


The National Quality Forum has partnered with PatientsLikeMe to evaluate a novel approach of using online patient-reported data to guide the development and refinement of patient-reported outcome performance measures.


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As patient-reported outcomes data becomes recognized as essential for quality improvements in health care, integrating patient-generated health data and patient-reported outcomes into the folds is an increasing challenge for health care organizations.

The National Quality Forum—in partnership with PatientsLikeMe, an online social media community that allows members to contribute personal health data anonymously for use in research projects—conducted a study to assess a novel approach of patient involvement in developing performance and quality measures. This partnership builds upon the National Quality Forum’s previous patient-reported outcome performance measures research and PatientsLikeMe’s online patient community-based platform research.

The partnership evaluated the potential of social media data by using conversations about chronic obstructive pulmonary disease (COPD), multiple sclerosis (MS), and rheumatoid arthritis (RA) to formulate profiles of what matters most to these patient groups. Highlights from this social media data analysis include:

  • Over 45% of COPD patients reported moderate to severe anxiety, while over 50% reported moderate to severe insomnia
  • RA patients stated that they were frustrated with their providers’ inability to understand the emotional burdens of chronic pain and noted challenges interacting with the healthcare system to address their concerns
  • MS patients expressed significant concerns about the indirect consequences of their condition, including loss of intimacy with partners due to declining health and worries about passing the disease on to their children
  • Nearly 90% of RA patients stated that either their physical or mental health has limited their activities
  • COPD and RA patients were highly concerned with identifying and managing triggers of their conditions
  • RA patients requested much more specific pain-related questionnaires from their providers
  • Individuals with COPD also urged enhancements to standardized questionnaires, including metrics to record the frequency and patterns of symptoms, the impact of insomnia and weight gain, and issues related to treatment compliance

“These five general symptoms (fatigue, pain, insomnia, depressed mood, anxious mood) may provide a reasonable starting point to define health-related quality of life via a single patient-reported measure,” the National Quality Forum NQF suggested in a report (August 29, 2017). “To make a meaningful shift to patient-centeredness, quality measurement needs to focus on patient priorities.”

By initiating new methodologies for data analysis, providers will be more aligned to meet the quality goals of value-based reimbursement arrangements while delivering effective and personalized care to patients, the report concludes.—Zachary Bessette