To improve quality, value of patient data, get them involved, study says

The key to the future use of patient-generated data is focusing on data that patients want to produce, own and use and making it easy for them to produce it.

At least, that's the take of four co-authors from Duke University in an article in this month's healthcare policy journal Health Affairs. The July issue is chockablock with articles on the many forms and uses of Big Data.

“We observe that the key to high-quality, patient-generated data is to have immediate and actionable data so that patients experience the importance of the data for their own care as well as research purposes,” the authors said in “Assessing the Value of Patient-Generated Data to Comparative Effectiveness Research.”

Patient-generated data, which the authors describe as patient-reported outcomes, or PRO will be “critical to developing the evidence base that informs decisions made by patients, providers and policymakers in pursuit of high-value medical care,” they predict.

“The easier it is for patients and clinicians to navigate (personal data) the more relevant that information will be to patient care, the more invested patients and clinics will be in contributing high-quality data, and the better the data in the big-data ecosystem will be,” they write.

“Analysis show that data quality improves over time and that the amount of missing data declines as patients experience the attention to their symptoms and actions that result from the information they provide,” the authors say.

Gathering patient-reported outcomes data remains in its early stages, the authors report, but doing something as simple as telling a patient, “I looked at your symptom report and … ” reinforces the data-collection effort, they said.

Electronic health-record systems are now required to have patient portals under Stage 2 meaningful-use criteria of the federal EHR incentive payment program, and many of the portals have survey capabilities, they said. Thus, patient “data collection in the clinical setting is rapidly increasing.”

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