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As an intern at the National Partnership for Women & Families (NPWF) and rising 2nd year law student, the hearing on Patient Generated Health Data (PGHD) provided eye-opening exposure to the need for patients to be active participants in every aspect of their care. The day’s most inspirational speaker was a student living with Crohn’s disease, Nikolai Kirienko, whose knowledge about his own body alerted him to a possible blood clot. When his personal knowledge went unheeded, he revoked his consent to surgery and insisted on testing which revealed the undiagnosed clot. He could have died that day had this information, of which he was the only source, not been shared. His point was simple: PGHD should be incorporated into the information that is seen by every other member of the care team, a sort of electronic “whiteboard” for everyone.

Nikolai advocated that we treat the patient as a “health exchange of one,” by considering them and their caregivers trusted sources of critical information for the entire care team. Emerging trends regarding the collection and use of PGHD in care is encouraging. At the Dartmouth Institute, information about pain level is provided by the patient before their appointment and is incorporated into the patient’s visit. The CHADIS program also uses pre-visit data as a tool for overcoming disparities by using audio aids to work around language and literacy barriers.

As a law student, I also understood the legal issues at play. Some physicians have concerns about liability arising from the inflow of data from multiple new sources, only one of which is patients themselves. The key, according to those actually using this kind of information, is to ensure it is perceived as useful to both the patient and the provider. Defining the appropriate set of data to be collected from patients and their families and making a specific plan for how it can be meaningfully used by both patients and their providers is essential. Additionally, both patients and physicians will need assurance that the information that is shared is protected and sourced appropriately.

PGHD creates a unique opportunity for the transformation of healthcare delivery by enabling patients to be active contributors to their health, informed decision-makers, and invaluable sources of information.

We would love to know your thoughts. Please respond to this post by answering the following questions:

• What kind of information is most important for patients to contribute to their own health records?
• What are some approaches for making sure the information provided by patients and their caregivers is meaningful and usable?