Let’s Start Talking to Patients About Their Data Needs

Let’s Start Talking to Patients About Their Data Needs


Data sharing, interoperability, is constantly in the headlines. How do we achieve it? How do we make access easier for everyone? However, it’s rare that “everyone” means looking at the patient’s data needs and the healthcare organizations’. Galen Consultant and Doyenne Connections founder, Max Stroud has been a champion behind getting the patient’s voice heard, from her HIMSS 2017 presentation to her recent Healthcare Informatics article.

An excerpt from Max’s Healthcare Informatics article:

“When we in the industry discuss the concept of interoperability, we are most often talking about it from the perspective of a healthcare organization. We want the data that we collect to be visible, actionable and presented in context. We analyze the needs of the hospital, the clinics, the lab, the billing office, the federal programs that need reports run. We build connections in an effort to move closer and closer to the elusive “one source of truth” for clinical data. We rarely, if ever, talk to patients about their data needs.”

Max’s sister, Beth, has lung cancer and has been acting as her own “medical record” since her diagnosis. Her tote bag has become a symbol of the current “method” patients use to share their records with their care team across multiple healthcare organizations. The pair co-presented at HIMSS17, where they expressed how “as a patient with a chronic condition, health data becomes central to life–an additional part-time job to manage who needs what information, and when and how.” The discussion continued by shedding light on how using the patient narrative “to explore gaps in health data interoperability can provide critical insight into information that may not be evident from within the healthcare organization.”

From the Healthcare Informatics article:

“Even as we push interoperability and integration, our focus is on what happens within the walls of the healthcare organization. The future of interoperability is not about getting your patient to stay where their data is—it is going to be about the data following the patient.”

Let’s continue the conversation. Read the full article on Healthcare Informatics and view her HIMSS presentation here.

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